How can I survive WITHOUT an ileocecal valve?

by Bob
(Carefree, AZ)

During my 2009 appendectomy, the surgeon also removed my ileocecal valve. Now I have to learn to live without it, but am unable to find anyone—in or out of the medical profession—who can suggest ways of treating this unusual condition.


By experimenting, I have found ways to improve matters, but still am saddled with a digestive system that now swings from constipation to diarrhea. My tentative results have shown me how to avoid the diarrhea half of the problem, but not the constipation part.

Does anyone know of someone who has had experience with this problem?

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Aug 02, 2017
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Help NEW NEW
by: Anonymous

Until you have some thyroid stability, what you are describing could be hypothyroidism. The doctor should check your TSH every three months, tweaking your thyroxine dose to a trend line, not jacking you this way and that to the latest (annual?) test result.

There are folks on here that profess to have figured it out - but their solution seems odd. Maybe their GI just finally adapted?

For weight issue, they say never eat before bed. But be happy you can gain weight as many of us have great difficulty doing that what with reduced ability to absorb fat.

Aug 01, 2017
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Help NEW
by: Anonymous

I had a benign mass (diverticulus maybe?) in 2007. They removed 25% of my intestines, my appendix and my ileocecal valve. Since having the surgery my digestive system has never been the same. I am uninsured and cannot find a doctor that can figure me out. I have never once had diarrhea as a result of my surgery as I was told I would. I am on no meds besides birth control. My thyroid is up and down and the dr decided to keep me off of meds due to the last results being within normal.
I am sluggish, forgetful and sometimes feel like I am losing my mind. I am only 35 years old and I feel like I shouldn't be living like this. I have slowly been gaining weight here recently and nothing is working as far as taking it off. At one point I lost so much weight I was sickly and now it is the opposite. It doesn't matter how healthy I eat I am still stopped up daily. My food feels like it sits in my abdomen.
What supplements are you all taking? Does a missing ICV cause your body to react to meds differently? I've taken meds for depression and anxiety that do nothing for me but make things worse. So, I'm wondering if it's a possibility that my body just doesn't absorb meds the way a normal body would.
I've lived 10 years like this and enough is enough. I need some relief and ability to live a normal life again!

Jul 27, 2017
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Ileocecal and colectomy NEW
by: Crash Survivor

In a word Bannanas! I was only left a few inches of colon (less than 4) and lost the rest and ileocecal valve to ulcerative colitis in 2006. Where wet stools is concerned, I think that is more from losing so much colon. Which absorbes the water back from stool and (normally) allows it to pass as urine. I surmised this quickly as urinary flows subsided and wet stools became the new norm. I've also noticed that drinking plenty of good, clean, fresh, living water helps. Especially with acid and burning. Alkaline diet and pay attention to the Ph balance of water you intake. Slightly alkaline is best, definitely not acidic anything. Even tomatoes were to acidic at first. Follow food combining charts as many foods in the western diet are not good to be eaten together. E.G. meat and potatoes. Your digestive system uses acid to digest the meat and has to be much more alkaline for the potatoes. Confuses your system, Meaning something is going to have to wait or go through only partly digested. Eating them two hours apart is fine though. So a lot of food related problems aren't necessarily thar food. It might be a bad combination. But definetly nothing acid, such as milk, avocados, pickles,etc. Excellent "food combining" charts can be found online through Google or Siri, etc.
Secondly, enzymes do help, I prefer the Blood type Diet kind taylored to my blood type. Search blood type diet probiotics. Side note: Pancreatin being the enzyme that best eats cancer cells. The time of day you eat certain foods can help a lot. Keep the 'ose's (including but not limited to sucrose) for in the morning or lunch. Nothing sweet from 4-6 hours before sleep. I suspect sugars turn to acids, I'm not positive. Definetly do your research, this thread is great. But you are unique too, so look into your specific case. Avoid rollercoasters that come to a quick stop as this can cause problems. Along with anything similar. Let me explain. The ileocecal valve is supposed to act much like the sphincter valve in your anus. This would seal off the upper (small) intestine from the lower if present. Your small would remain sterile. The colon is not. Without the ileocecal valve neither is anymore. Gravity helps, but being jerked around does not. In this case, and note this psychological side effect, your blood is now being manufactured in a non sterile environment. Contaminated from the start! Your liver will be working overtime. Even if your liver is normal you should try to feed it what it needs to stay healthy and filter your blood efficiently. The psychological effect is as you can imagine, a rather shatty disposition! Pay attention to relations between diet and mood. Counter the bad moods with clear fluids and light foods like jello, etc. Purge. Eat smaller more frequent meals. Fruit is good for this, especially bananas. Especially helpful with either diarrhea or constipation. As with many many physical and mental problems, vigorous physical exercise is perfect, particularly swimming. The mental effects of exercise are sooo under rated. Even if you're disabled do as much as you can or lose that too! Endorphines, adrenaline and whatever else. Hard physical exercise to the point of heavy sweating is theee best treatment for things like depression, anxiety and so forth. Avoid tanic acid (tea), lactic acid (milk), and grapefruit, etc. If you also suffer a candida overgrowth (probable) fill a copper vessel with water every night and drink it first thing in the morning. I won't explain the lengthy electrolytic reasoning here, but trust me or research it yourself.

Jun 30, 2017
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low dose naltrexone NEW
by: Anonymous

Anyone with any digestive disorders owes it to themselves to at least take a look at ldn (low dose naltrexone). At the very least it may help them handle a difficult situation a little easier.

Jun 11, 2017
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Low LDL
by: Anonymous III

to CCGil: You didn't mention whether you are taking cholestyramine or similar bile management drug. If so, it would seem that your total cholesterol was low too. One word to think of is "malnutrition" -- or more correctly, "malabsorption". If you are *not* on bile management drug, ask your doctor to consider supplemental digestive enzymes, like brand Creon (extracted from pig pancreas), a combination of lipase (fat), protease (protein) and amylase (starch) enzymes. (It is expensive.)

My LDL was in the mid 20s and Total Cholesterol was under 100. After just two months, all is normal.

Jun 05, 2017
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Fat versus carbs
by: Mark

Nice thread. I was diagnosed with crohn's 25 years ago. Probably correct diagnosis as a colonoscopy showed "scarring" in my Ileum a couple of years ago although luckily my symptoms restricted just to generally loose stools for many years.
I was interested in the ketogenic diet meaning low carbs, normal protein and high fat, along with plenty of healthy veggies and salad. Initially went well and felt good until i suddenly started getting bad watery diarrhea exactly 1 hour after meals.
I think that I can't take the increased fat because it increases bile which I can't reabsorb in my "scarred" ileum, so it enters my colon. Also I stopped snacking which probably causes a more "healthy" build up of bile in my gallbladder.
Any thoughts?
I think I may try low fat veggies and protein earlier in the day and at the start of the meal so that there is something to slow down the bile when I eat my fat later. Otherwise i will need to bin the whole idea.

May 25, 2017
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Severely low LDL after bowel resection
by: CCGil

I think this thread is where I might get an answer. What can be done to improve severely low LDL cholesterol levels?
In 2016 I had a mesenteric Desmoid tumor removed with bowel resection (ICV ,cecum and appendix removed too).
My LDL before surgery was 124. Five months after surgery it was 33. Have not had levels checked in 2017 yet. Recent check up with my GP, he said could be an early sign of cancer..however, might be because I don't have ICV.
So, if anyone here could help me better understand..if you life without an ICV, do you also have severely low LDL cholesterol? What type of healthcare professional has helped you with your diet to raise this to a better level? I really appreciate any input you may have. Thank you.

Apr 29, 2017
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ANSWER TO NICOLE's SITUATION
by: Anonymous

Dear Nicole, I had 14 inches of SB and entire right colon removed, so IC valve as well.
Eat green plantain. It works for real and it's a healthy, nutritious food. If you wanna try it, let me know and I will write about how to prepare it.
Best of luck.

Apr 28, 2017
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read my april 11(?) post
by: bert

Bob and Nicole- please read my April 11 post. Fat causes the secretion of bile. You have no cecum to recirculate bile. Bile irritates the colon. Irritation causes diarhhea. cut back on fat and your diarrhea will get better.
It is hard to find low fat food out or at home for that matter. Cutting out fried food, chips, cookies, bottled dressings, mayo, ice cream etc., helps. Substituting applesauce in baked goods is a trade I use.
I wish you both good luck. Let me know how it goes.

Apr 28, 2017
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GOOD NEWS UPDATE
by: Nicole

I'm really hoping this can help some of you. I've posted on here a few times. Had 3 1/2 feet of small intestine plus ileocecal valve removed nearly 2 1/2 years ago - from a blockage)

My symptoms have been LOTS of diarrhea and unable to gain weight. It went from about 10 diapers a day to more recently, maybe one or two accidents every couple days- but it's usually very runny and if I'm not 2 minutes from a bathroom, forget it.

I have tried many things (Questran- up to 4 packs a day- no help, pancrelapase enzymes, stomach injections, immodium and lomotil)
I've been just doing the lomotil for about 8 months- 6 pills a day.

I want to say that all the meds I've mentioned have helped many people, just not me. I believe the lomotil has been helping slow things down but I was sill having way too much diarrhea and urgency and gas. A yiyiyiyiy. (plus, I've been worried about taking so much of it)


Anyway, in searching around the internet, I found a dietitian (Carol Rees Parrish) who deals specifically with post intestinal patients. I read a bunch of her writings in medical journals and ordered a free book from a short bowel site. http://www.shortbowelsyndrome.com If I'm not allowed to post this link, just let me know. I am not affiliated with them or trying to sell anything. I've posted on this site several times and read so many of your posts and I'm just trying to help.

Anyway, I got the free book and learned so many things about short bowel. I decided to write to her and thank her for the book and found her address at The University of Virginia, online. Anyway, I got it in my head that maybe if she saw my operation report, read my medical records, I could get some help. The bad part is she wasn't covered on my insurance but I paid the $340 cause I was kind of desperate. We talked on the phone and she ordered some blood work and a fecal fat test, through my gastroenterologist. OK, this is the part that gets me kind of annoyed. I LOVE my gastro guy. I truly believe he has tried very hard to help me and has suggested many things but WHY didn't HE THINK OF THE FECAL FAT TEST? You basically eat 100g of fat a day, poop in a jug and they test how much fat is in your stool. Well, almost all the fat was coming out. So what was I doing, spending the last 2 //12 years putting olive oil on everything, trying to eat as much meat as I could (I was a vegetarian for 25 years) in an effort to gain weight? Within 3 days of eating what she suggested - 2000 calories, staying under 40 g of fat a day, I have not messed up a diaper ONCE since April 2nd... that's nearly a month!!!! My husband and I even drove 17 hours to visit my Mom over Easter!! ( I would have NEVER tried that before this diet) My stool has much better form and I can at least get the hint that I have to go before it's too late. The gas has definitely improved. I went from 6 pills of lomotil to 3 or 4. I actually think I could go off of it completely but she assured me it's probably still helping. Anyway, I am THRILLED!!!!!!! OK, I need to say that it is not easy to get above 2000 calories with only 40g of fat- but Im sure I'll figure out ways to do it. I'm an awful cook. HA Yesterday, I made banana bread and used eggs instead of oil. I'm only slightly going up in weight. ( i know I didn't get 2000 calories a day at my mom's house but I'm back on track at home) I know it will not be easy but I think if I can steadily eat enough, my weight will increase. At least the diarrhea has stopped. whew!!!!!!!!

I know this is a long post but I'm just trying to help someone. Why not ask your doctor about the fecal fat test?

I remember seeing a post on here about a guy saying the high carb (basically, how I'm eating now) diet was a lifesaver. I tried to contact him, he posted his email address, but it wasn't working. I tried what he suggested in the post but I don't think I was strict enough or maybe didn't do it long enough. All I know is when I went to really keeping the fat below 40grams and spreading it out through the day- my life has REALLY REALLY REALLY improved! As always, check with your doctor. Good luck and hang in there.


Apr 12, 2017
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Bile vs enzymes
by: Chris

Although enzymes could possibly play a part in anal burning, most of it is cause by bile, especially if you are without a gall bladder. That's why cholestyramine is a life saver, as it neutralizes the bile acids. I don't have to take it as much now as I did in the first two years after my bowel resection, but it does definitely stop the burning.

Apr 11, 2017
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My story: three years and counting
by: bert

This is the first article that really addresses my problem. In 2006 I had uterine cancer and after a complete hysterectomy, had radiation for a few cancer cellls in my lymph nodes. By 2010, I had horrible intestinal pain and vomiting. CT scans showed nothing and I was in pain for three years until finally I had one bout of pain and vomiting that was so bad that I had an emergency CT that showed scaring from the radiation had just about blocked the small intestine. I had 10 inches of the small intestine removed and after the surgery healed felt better (and thinner) than I had in years. But 5 months later the pain and vomiting returned and I went back in for surgery. Afterward, the surgeon said that he had removed a wad of small intestine and much of my accending colon including the cecum. All this caused by adhesions from the original surgery. And a year later, I had a hernia removed which was caused by going into the original incision for the second surgery. He also threw in a tummy tuck which turned out to be more painful than either of the othe three surgeries combined.
After the surgery I developed constant diarrhea. I was given Welchol, which did not seem to help, told to avoid a let of fiber and eventually sent to a GI doctor. He changed me to cholestyramine. Neither he or my interenist ever told me to avoid fat. When I told him that I had decided that "fat was not my friend" he looked at me like I was a dummy, and proceeded to tell me that fat caused bile to be secreted and since there was no cecum to recirculate the bile, the excess bile irritated the colon and caused the diarrhea. Wish I had been told this from the beginning. Anyway, As long as I avoid fat, the diarrhea is not too bad. The consistency is not like before, but it is liveable. I still use cholestyramine and keep imodium in business because it is nearly impossible not to eat some fat. After more than three years after the removal of the ascending coon, I still don't know for sure what I should eat. Does anyone have any suggestions?

Apr 02, 2017
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Salad
by: Dan

Now Optimal Digestive Enzymes lets me eat mixed green salad with no problems. I had to test different enzymes to find the one that worked for me. If I don't take it and eat mixed greens, it goes right thru me.

Apr 02, 2017
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To: Now two years without a valve
by: Honesty

Your comments touched me b/c I was in your shoes after my colon cancer surgery 4 years ago. Being a nurse helped me to deal with the problem and I hope it might help you now. What makes your anus burn is not bile but Enzymes that are literally "digesting" it, and that come with the still unprocessed stools which are not yet ready to come out. But what to do? Avoid ANYTHING that stimulates your BMs (Bowel Movements). The Goal is to slow BMs down: minimize fruits and veggies intake (as unhealthy as it sounds, you are in a survival situation and are to act accordingly) or anything high in fiber (beans!). I have done well with potatoes (without the skin) and rice. Pasta is not bad. NO black pepper, jalapenos or the like. NO sodas or alcoholic bevs (I tolerate half a beer now). If you can tolerate dairy products you're lucky. I cannot except Swiss cheese. And TWO things that have helped me big time: PBs (Probiotics, I buy brand 365, "Daily Probiotics." AND green plantains: Take one, wash with soap and water, cut the ends (about an inch and a half), slice in one quarter inch thick slices, and boil without removing the skin for 40-45 minutes. The put salt and olive oil and eat. You'll be surprised. Start slow on the PBs, one a day, and see how it goes. If you have any questions write in this forum again and I'll try to help. You can eat all the meats you want, eggs are ok too, or anything else that is low in fiber. And best of luck!
Best of luck!

Mar 31, 2017
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Now two years without a valve
by: Anonymous

For every day since my surgery two years ago, I've logged everything I've eaten & when, every medicine & when and every poop & when. I've not figured anything out at all. Once the diarrhea starts, the stomach contents gets to the colon - where it is an "irritant" and it continues until I am completely empty. 10-15 over 4-6 hours.

I agree with the poster who said that cholestyramine made for heartburn. They switched me to Welchol (colesevelam) and then doubled the dose to six per day. I think it helped some. But I went to a meeting and chatted with a doctor during a session break. She commented that I looked malnourished and I should make an appointment for an office visit. They did a blood draw and I was indeed *very* deficient, especially with the fat-soluble vitamins and the essential fatty acids, so important for proper function of so many things.

There is mention here of the "butt burn" from bile with the diarrhea. I think that may be true, but they tested my "output" for lots of things - including pH. Report said pH of 4.1 (acidic). No wonder it irritated the butt so much! It may be stomach acid, not bile that hurts and irritates so bad?

I'll be seeing an expert at National Institute of Health (NIH) - [USA] in a few weeks. In the meantime, I am on tincture of opium. Just a few drops 4 times a day has made a huge difference, 'given me my life back' as they say. But I hate the idea of being a dope user.

The good news is that I've not had SIBO since I stopped taking probiotic 18 months ago. That was when we had to go to the Emergency Room at the hospital as the bacterial overgrowth was scary. They put me on Flagyl for 10 days (cheap!). I was out of trouble in just one day, amazing medicine.





Mar 29, 2017
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SIBO
by: Chtis

I should have said that I know bacterial overgrowth is real but what I'm not getting from the doctors is that it happens because you don't have an icv

Mar 29, 2017
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Bacterial overgrowth
by: Chris

I've yet to run into a medical professional who believes that bacterial overgrowth from the large intestine backing up is real. It has been almost 7 years since my bowel resection from a carcinoid tumor. I don't have an ICV. I have been able to manage the diarrhea for the past few years, but just in the last several weeks I've had a pretty serious bout of it for no particular reason. I'm not on any kind of special diet so I can't tell if there is any trigger for it, but something is definitely happening. I read about an antibiotic that is gut specific but it's also very expensive. Most of the GI doctors that I've seen have been fairly clueless about this condition

Mar 29, 2017
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ICV removal causing Lupus (auto immune)
by: Anonymous

In 2001, my intestines twisted resulting in Drs removing ICV, appendix & 18" of large intestine. Now, at 41, after 3 having kids and 16 years past surgery, my GI has chosen to act up with a vengeance. :( Without having the valve to keep the small intestine sterile, I'm afraid that there's a lot of "mixing" between the small & large intestine which I believe has become the 'root' to the slow and chronic auto immune issues that started 3 years ago--now being diagnosed with Lupus. I'm dairy free, gluten free and try incredibly hard to keep a clean diet. Why, at this day in age is there not an ICV replacement available yet?! Has anyone tried xifaxin? What supplements have been helpful to keep the balance? Has anyone tried massage, chiro, etc... to help maintain proper flow? If so, how often do you need Tr? Any advice is grately appreciated. Thanks so much!

Feb 17, 2017
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To Anonymous - Imodium & blueberries
by: Honesty

Thank you. I will try the blueberries.
Totally agree with the Imodium comment.

Feb 16, 2017
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Immodium
by: Anonymous

Be careful with Imodium. I tried it and it affected my brain where I almost had a bad car accident by not noticing the light was red. Operating machinery can be very dangerous too. Soil based probiotic and LEF Blueberry Extract helps me greatly. There is a science study from Japan on blueberry extract stopping chronic diarrhea in the mouse model.

Feb 16, 2017
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Plantains
by: Honesty

With 3 and a half years without the valve and trying new things I can recommend from experience
GREEN PLANTAINS. They MUST be green. Definitely work. I usually eat them (not daily) for dinner. Easy to find and not costly.
PREPARATION:
1. Wash the plantain with soap and water. Yes.
2. Cut the ends,about 1-2 inches,and discard them
3. Slice the plantain in quarter-inch slices WITH THE PEEL ON. Think of it as a carrot, sort of
4. bOIL water, enough to cover the plantain slices you are going to put inside, but not
more than one inch above them. Boil for 40-45 minutes (knob on 3-4) and then try poking them with a fork or knife. They should be soft now.
5. With that same water, which now has the astringent substance in it, make a mash, like
mash potatoes using a strong fork.
6. Add salt and olive oil for taste.
7. Don't wait more than 10-15 minutes to eat it b/c it gets hard easily. I find the taste pleasant and unique. You may add garlic powder too

This is the ONLY natural food that I have found to be clearly constipating, thus helping with
diarrhea. Good luck!

5.

Feb 16, 2017
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IMODIUM use
by: Honesty

After 3 and a half years without the valve, I recommend Imodium only during the first year, while
adaptation is hardest, and only when really necessary thereafter. Imodium is a drug and with time it can make you dizzy b/c it has a cumulative effect in the body. It may also decrease your urine output if you have some prostate issues.

Feb 13, 2017
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Diarrhea
by: Dan

For diarrhea try freeze dried blueberries or a blueberry extract supplement like the one LEF makes

Feb 13, 2017
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Living w/o ileocecal valve
by: Anonymous

Try imodium 2 times a day. Works for me. Cramping and diarrhea rare.

Jan 21, 2017
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So... I had a very different
by: Anonymous

path to this problem than most of you.

What started as a perianal abscess ended up requiring two emergency surgeries to clear the abscess with a 10 x17 cm surgical wound right near my anus. During the second operation my bowel was perforated leading to the entire contents of my bowel flowing out through the wound.

So they performed a diversionary colostomy to give the bowel and surgical wounds time to heal. After that I was discharged from hospital and given time to heal for six weeks minimum until they could reverse the colostomy.

Four days after discharge I was in serious pain and ended up taking myself back to the hospital.

Turns out I had bowel ischemia. During the emergency operation to deal with that they removed 1.7 mtres of my small bowel including the entire iluem and ileocecal valve.

Currently I still have the colostomy bag attached and all output into it is basically fluid or on a good day very liquid paste. I've tried everything to try and get it more solid and am on a mix of 3x daily Questran and 3x daily Fybogel.

It's weird because the Fybogel is supposed to be a laxative but for me it seems glue everything together.

I've lost over 20% of my body weight (and I wasn't very big to begin with) and they had me on an ensure type food replacement. But I suspect that is actual part of the problem.

I'm very tempted to just stop all of the above for a week or so and see how I get on. Give my body a chance at least to work itself out.

I'm also on various supplements including calcium, magnesium and iron.

My dilemma at the moment is do I go ahead with any plan to reverse the colostomy and risk living with permanent diahorrea .. or do I just accept that I will live with a bag for the rest of my life?

Is there any chance of getting back to 'normal'?

Dec 28, 2016
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Cholestyramine
by: Chris

I only take it occasionally now. I've never had any side effects from it but it was a life saver early on.

Dec 28, 2016
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Chris
by: Anonymous

Chris, Are you still taking the chlorestamyine? I was given a prescription but it causes bad heartburn and i read that it can hamper your absorption of vitamins.

Dec 28, 2016
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cholestyramine
by: Chris

The diarrhea will be there awhile but you can stop the burning with cholestyramine, available under a couple of brand names. Bananas, rice, toast and apples may help the diarrhea. For me, it took a couple of years but it's under control now.

Dec 28, 2016
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Meal options
by: Rob

Imodium 30minutes before breakfast
Breakfast plain oatmeal cooking in water
Rice cakes for morning snack and tea no milk
Banana
Lunch beans in a light tomato paste with brown rice - with black tea or water
Dinner as you please

Good luck once you get balanced then you can vary but start of day is most vital

Dec 28, 2016
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Ileocecal removal
by: Anonymous

I had a ileocecectomy due to acute appendicitis in September. I'm having trouble with bile acid diarrhea. I've read that this is an issue with the ileocecal valve gone. Bananas help. Im also now low in iron. If anyone has any information on hoe to stop the diarrhea without meds that would be much appreciated.

Dec 03, 2016
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B12 injections
by: Rob

Hi
I have had 2 x resection operations about 20 years ago. Since then approx every 6 months I give myself B12 injections (and get periodic blood tests).
B12 injections are not that uncomfortable if you get the serum injected slowly and not thrust in one blast.

Dec 03, 2016
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checking levels
by: Chris

Ann, the only other level to check that I recall was potassium. After my resection in 2010, I had to have potassium injections in the back of the hand. Now those ARE uncomfortable. I had constant diarrhea for the first year so I was pretty depleted.

Dec 02, 2016
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Unnecessary colon resection surgery
by: Rick

I have delayed right hemicolectomy surgery for Dec 6,because I discovered a procedure known as EMR, Endoscopic Mucosal Resection, this is an outpatient procedure that takes about an hour instead of unnecessary colon resection surgery. It is for difficult, and large polyps found during a colonostpy. I searched relentlessly for an alternative to colon resection surgery. There is too much to lose .GET A SECOND OPINION! DO YOUR HOMEWORK! I have an appointment with an EMR ,International endoscopy specialist, and will keep you posted on my situation.

Dec 02, 2016
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B12 shots
by: CHRIS

SUNDANCE, with a 1 inch 25gauge syringe , the shots are painless in the upper arm

Dec 02, 2016
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Dark Circles
by: Ann

Hello - I have posted about my experience previously, but have found that lately that the dark circles have increased. I also have a bit of dizziness and an occasional tingling of the neck/shoulder area. I am going to get tested for my B12 levels, but what I am looking for is that someone had posted there is another level that should be checked. Does anyone see it on these feeds or remember what it is? Thank you!

Dec 02, 2016
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Thank for that information regarding B12
by: Sundance

I talked to my doctor about having the need for B12 shots, he indicated to me that I would not need the B12, probably he might have left some of the part that absorbs B12 in place. But I will keep watch for the warning sign that you mentioned. I hope I don't have B12 shots, I heard they are not pleasant. I'm 69 years old. That polyp on my valve was not Cancerous but had to be removed through surgery because it could not be removed through colonoscopy.. Thank you again for the response...

Sundance

Dec 02, 2016
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B-12
by: Chris

Sundance, you are one of the lucky ones, but you only just had the surgery. Have your B-12 levels checked in a few months. If they removed the part that absorbs B-12, you will need a shot,although you may not need it every month. I had an episode last month where I experienced tingling in the hands and neck and went to the ER. They couldn't find anything wrong except tht my B-12 levels were 1200+ which was above normal. I had just had a shot the night before. There is a possibility that my symptoms were caused by that. I'm supposed to back off the monthly dose to every other month until I get the levels checked again

Dec 01, 2016
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ruptured appendix
by: Anonymous

Two years ago I had surgery for an inflamed appendix, which burst during surgery. The appendix was infected almost to the cecum, so they took the appendix, the cecum and the valve. I was worried about what would happen, but everything is basically back to normal. I found that steamed kale, two or three times a week, was extermely helpful with peristalsis. And my leavings were well formed. Last year I had my left hip replaced, and one day home from the hospital I developed ischemic colitis, but I survived that well, too. Now normal.

Dec 01, 2016
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I had my ileocecal valve, Cecum and part of my small intestine
by: sundance

Hi all, I just had surgery to remove a polyp that was covering and inside my ileocecal valve.
I had my ileocecal valve, Cecum and part of my small intestine, my appendix. Please not every body is the same I read alot scary stories about losing this valve, that it might change your life when it comes to natural functions of the bowel. My doctor told me that I will have some lose bowel which I had for about a week but I just stayed with low fiber diet and mix it with an occasional food with fiber and I was fine. So I pretty much eat what I want and have not had the need for vitamin B12 shots. I had the surgery on Nov14 2016 and have been home for 3 weeks since the surgey. I thought I might share with anybody whose is about to go through this that most of the time this surgery is not always going to be as bad as you might think. I hope this puts some of your minds at ease. Good luck to all

Nov 21, 2016
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Extra nutrients needed
by: Anonymous

I commented earlier about my daughter living without a valve. A blood test to show nutrients in you body is essential. They are absorbed in the small intestine. If you have less then you will struggle with malabsorption syndrome. A GI doctor can do this test and a nutritionist can read the results. As I said, my daughter has lived her entire life without a valve. It's not the end of the world, though it can feel like it sometimes.

Nov 21, 2016
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Upcoming surgery
by: Rick

Thank you for your comments, I'm currently waiting for the Dr's office to call with an appointment, also I found out that when the ic valve is removed the body can no longer absorb vitamin B12,as this is one of the functions of the valve, dark circles under the eyes are a symptom of vitamin B12 deficiency.

Nov 21, 2016
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To Rick
by: Anonymous

Rick - I meant to comment on the "why" you asked about. I think it depends on where your polyp is located determines if they can leave the ileoceal valve or not. If your polyp is wrapped around the valve like mine was they really have no choice, but to remove the valve. I was told that the location of where my polyp was made it very difficult for them to see it completely. Again, for you to be confident going into the surgery, sit down and visit with them or maybe they have a PA that works closely with them like the UofIowa does. They were a great resource for me. Again, Good Luck!

P.S. My surgery went like clockwork, but I got home the Thursday before Memorial Day weekend. My throat started hurting terribly. Thought I had picked up strep from my Granddaughter. It was Thrush - watch for that. I was one sick pup for a couple days, not from the surgery I might add! So - if you start getting a sore throat - check it out and get meds quick!

Nov 21, 2016
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To Rick
by: Anonymous

Rick - just wanted to reach out and give you encouragement. My story was written on March 29, 2016, so go back to that point. As you face surgery know that other people have been through this and it is scary, but having the surgery truly brought me peace, as I had three colonoscopies all with regrowth of a precancerous polyp. I am now 54 - life isn't perfect, but I know that it gave me the best chance in life to get ahead of something that could turn into cancer. If you have concerns about the procedure, you should sit down and talk it through with your doctor, so that you feel confident. No question should be left unasked or answered. Good Luck!!!

Nov 20, 2016
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Apple Cider Vinegar
by: Dan

Yes, dilute Apple Cider Vinegar with filtered water. Can sweeten with good dark honey or organic stevia. I buy Bragg's Organic Apple Cider Vinegar. Braggs recently came out with organic cider drinks that use stevia but are expensive.

Nov 20, 2016
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Anonymous writtin on NOv 19
by: Honesty

Dear Anonymous: Thank you for clarifying for ALL OF US what SIBO means AND what its cause was. As a retired GI NURSE I strongly recommend readers here to ignore the comments made by Dan also on Nov 19 (I'm sure he had the best intentions but
he's just not well informed. Please Dan, don't take this personal):
If you ever take Apple Cider Vinegar for anything
(which might be good) you FIRST MUST dissolve it
accordingly. You don't just take it! It's very strong and can do you harm. As also a patient without an IC valve, I assure you BEER has never been a help, even tho I love it and wish it had been. I hope this helps as much as the very good
Anonymous input. PLEASE do not be quick to advise others before you are sure of what you're saying. And when you do, try to be specific so it can really help. May Dan and all of you be well and have a happy Thanksgiving. BTY the five star rating I put above is for Anonymous 11/19. Someone else gave him/her a miserable 3 stars!

Nov 19, 2016
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Probiotic Issue
by: Dan

I have found that soil based probiotic work much better in me due to not having ileo decal valve. To stop sibo and gerd use Apple Cider Vinegar and red wine in acute cases. That works for me. To induce gerd caused by sibo I drink beer and eat simple carbs. Like clockwork.

Nov 19, 2016
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SIBO
by: Chris

I've been told by my GI doctor that sibo is pretty rare in these cases. I I have periodic diarrhea still after 6 years since my surgery but not having an IC valve does not mean automatically that you will get sibo.as the doctor put it, things tend to flow one way

Nov 19, 2016
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No valve for 21 months
by: Anonymous

It has been a while since I've been on this site.
First, if you've had a right colectomy, probiotics are not your friend. The heavy load of bacteria give rise to SIBO (Small Intestine Bacterial Overgrowth).
For those who face surgery, please try to second opinion. Surgeons cut for a living, it is always their answer. An experienced oncologist would be useful.

Nov 19, 2016
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Ileocecal valve removed?
by: theBear

I deeply apologize to those wanting to know how I've done so well after my upper colon, secum and other stuff were removed. I've been trying for months to track down the records of my surgery but I can't find anything. The surgeon turned the records over to my civilian doc who turned them over to VA, who digitized them and now can't locate them. However, I have tried fasting, along with my church, and both times got violently ill while lying down so I suspect that my ileocecal valve was removed and stuff is backing up into my stomach. I threw up black stuff for 24 hours after just a day of fasting. I normally eat a lot and maybe it pushes the nasty stuff down. I just don't know. I've pretty well run out of any hope of finding my surgery records.

Nov 19, 2016
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To Bob, about upcoming surgery
by: Anonymous

Bob,
I'm sure your surgeon has a good reason for believing they need to remove more than just the polyp. Is there a way you can get a second opinion? Or talk to your doctor about your concerns and see how they feel about trying to just remove the polyp?

Some people do very well with bowel surgery and remember, if people are ending up on this site, they're probably people who have had a harder time with it. I had some small intestine and the ileocecal valve removed and I would not recommend it to anyone- BUT again, if your surgeon believes removing more than the polyp- maybe to protect you from pre cancerous cells- then I'd go with their opinion.... or the opinion of a second doctor.

Good luck.

Nov 19, 2016
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Upcoming surgery
by: Rick

I'm facing right colorectal surgery in 2 weeks because of a polyp that could not be removed during the colonostopy, I've been told by my surgeon that my small intestine will connect to my large intestine,during surgery I'm loosing about a foot of my large intestine ,also my ice valve, why can't the section with the polyp be cut out and the large intestine sown together? Is this common practice during this type of surgery and why?

Oct 07, 2016
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Daughter without valve
by: Anonymous

My daughter, now 13, had her valve removed when she was 12 hours old. She sees a GI doctor regularly. She also has short gut syndrome. She uses Mirolax every day and uses Senna tablets when needed for constipation. Extra water is ESSENTIAL to maintain proper bowel function. At least 80 oz a day for adult. Good luck!

Aug 15, 2016
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maybe or maybe not
by: tukigg

I'm a 84 yr old guy in good health. Blessed to have so many years in great health. I was diagnosed with low grade dysplasia on my Ileocecal valve. I am now going back for another colonoscopy to see if it has progressed. Previously, Doc's said maybe a resection. My problem? I'm feeling great, and lets's face it, just how many years do I have left.Don't know what consequences would be if I DO NOT get resection. Right now. can eat everything, with an occasional cocktail or two, and can do and go wherever I want. with no problems. I read all the comments about diahrea and wonder if I should just let it go and take the consequences. Any Thoughts??? Tukigg

Aug 12, 2016
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PROBIOTICS AS A BIG HELP.
by: Anonymous

So this site is now becoming an advertising site.
Hope is not overdone, otherwise I will visit it no longer.
I have found PROBIOTICS to help. Although they must be taken carefully and not in any which way.
The role of bacteria in the colon is huge and the frequent diarrhea (lots of stools charged with digestive enzymes) seems to destroy them, so they must be replaced. Each individual is different.
MY CASE IS: No I-C valve, 1 foot of Small Bowel
removed, right colon (ascending) removed. I am finding 1 tablet approx. every 24 hours to be very useful ("Daily Probiotics" 4 Billion Cultures, 365 Brand). You may purchase any brand which matches
the amount and types of cultures. Best of luck.

PS: Another patient not long ago reported infection in small bowel due to probiotics, which is why you must not abuse them, altho his/her case is a pretty uncommon one.

Aug 11, 2016
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To Penny
by: Chris

The Questran was a life saver for me after the surgery ( I am minus the valve and 6.5 feet of small intestine) but I rarely use it now. After 5 years, the diarrhea comes and goes but it is manageable. I don't have any dietary restrictions, but if I could find nutritionist who understands how this works, I would probably have no diarrhea at all. I still eat dairy, spicy foods, nuts etc; I'm sure something triggers the diarrhea but I'm never sure what it is...

Aug 11, 2016
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No valve here
by: Penny

My ileocecal valve was also removed with about a foot of intestine. First you should know that the valve is the only place in the body which absorbs vitamin B12, so your GI should have put you on monthly B12 injections.
Secondly, the bowel problems won't always resolve. I have had chronic diarrhea for almost 2 yrs now, but through research discovered this is common when the valve is removed. The cause is usually bile acid malabsorption, which needs to be controlled as you are not digesting food and absorbing nutrients effectively. BAM can be helped with a sequestrant such as Questran.
Hope this helps, and I hope you talk to your doctor soon about these things.

Jul 20, 2016
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No valve either
by: Jason

Your body will adjust with time, Took one year for me. Mine was removed during a small bowel resection due to severe Crohn's.

Apr 08, 2016
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Re: Suddenly wrikled palm side finger
by: Dan

My surgeon said he was surprised at how many lymph nodes I had (teenager count) but was 46 years old then.

Apr 08, 2016
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Re: Suddenly wrikled palm side finger
by: Dan

My surgeon said he was surprised at how many lymph nodes I had (teenager count) but was 46 years old then.

Apr 07, 2016
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Suddenly wrikled palm side finger.....
by: Honesty

Hi Dan, I have never experienced that or ever
heard of it. Your suspicion relating the 50+ lymph nodes you had removed may be correct. In any case,
if that's your main problem and you can power walk for 40 minutes, sounds like you're in great shape.
Best of luck.

Apr 07, 2016
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To Honesty
by: Chris S

Thanks. I went back and read the post about probiotics...thanks

Apr 07, 2016
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Suddenly Wrinkled Palm Side FInger Skin?
by: Anonymous

Does anyone else experience sudden palm side wrinkly finger skin that then goes back to normal? The only thing that fixes it 100% of the time is my power walk for 40 minutes. But usually two hours later the wrinkly skin comes back. This started after my Jan 2014 resection of 42 cm end of ileum, valve, appendix and 18 cm of ascending colon. I did have 53 lymph nodes removed and wonder if it is related to that as I don't have hydration problems except for potassium sometime dipping low usually when bowel acts up with diarrhea.

Apr 07, 2016
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Suddenly wrinkled palm side finger skin?
by: Dan

Does anyone else experience sudden palm side wrinkly finger skin that then goes back to normal? The only thing that fixes it 100% of the time is my power walk for 40 minutes. But usually two hours later the wrinkly skin comes back. This started after my Jan 2014 resection of 42 cm end of ileum, valve, appendix and 18 cm of ascending colon. I did have 53 lymph nodes removed and wonder if it is related to that as I don't have hydration problems except for potassium sometime dipping low usually when bowel acts up with diarrhea.

Apr 07, 2016
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Suddenly wrinkled palm side finger skin?
by: Dan

Does anyone else experience sudden palm side wrinkly finger skin that then goes back to normal? The only thing that fixes it 100% of the time is my power walk for 40 minutes. But usually two hours later the wrinkly skin comes back. This started after my Jan 2014 resection of 42 cm end of ileum, valve, appendix and 18 cm of ascending colon. I did have 53 lymph nodes removed and wonder if it is related to that as I don't have hydration problems except for potassium sometime dipping low usually when bowel acts up with diarrhea.

Apr 07, 2016
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For Chris S.
by: Honesty

Be careful with the pro-biotics. There is a comment posted here about that by someone who acquired a small bowel infection due to probiotics b/c, not having an IC valve, the "bios" (bacteria in this case) can freely travel up the bowels.
I suggest you read that comment.

Apr 06, 2016
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Baboon butt
by: Anonymous

Balneol is great for gentle cleaning perianally.

Apr 06, 2016
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To Nicole
by: Chris S

It's been 5 years since my bowel resection. 6.5 feet of small intestine, 30 cm of ascending colon, part of the ileum and the ileocecal valve were removed due to carcinoid tumors. The diarrhea and burning were the initial problems and the Cholestyramine (Questran) really helped. I never did go on any special diet. The GI follow-up Docs were pretty clueless about diet so I just did it by trial and error. I still have occasional diarrhea but it's manageable. I rarely take questran now and don't take anything for the diarrhea. I do have to take a B-12 shot monthly because the part of the ileum that absorbs B-12 is gone. They tell me that's the only vitamin I have to worry about, but I take a probiotic, multivitamin, magnesium and D as supplements. It's amazing how the body adapts....I'm now 66 and feeling really good. Hang in there Nicole, it does get better!

Apr 06, 2016
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I wish I could give you all a hug.
by: Nicole

I see my own experience in so many of your comments. I had 3 1/2 feet of my small intestine plus my ileocecal valve removed from an obstruction due to chemo and radiation I had 30 years ago to treat stage IV ovarian cancer.

That was 14 months ago and dealing with mystery poo has been tougher than when I had cancer. Mostly because it's so mysterious or as I like to call it, mysteriASS.

There are some things that I've tried that although they didn't work for me, I wanna throw them out there because they may be just what you need.

But first, Do yourself a favor and get an inexpensive (mine was $37 at costco) bidet. It is the best $37 I've spent in my life. There are all fancy ones but this one just attaches to your toilet and sprays clean water. My butt looked like a baboon's butt, it was so raw plus, at my worst, I was having diarrhea 17 times a day and getting cleaned up was exhausting. Just pushing a button, and then patting dry with like 3 pieces of toilet paper has made it much more bearable. I know you're thinking, I dunno..a bidet.. sounds goofy, how much could it really help? Believe me, it helps, the one I have is a BioBidet Elite. There are some really fancy ones that have warm water and a blow dryer but this one is just fine and my husband installed it in 15 minutes.

Here are things I've tried that didn't seem to work for me but I've done some research and they work well for others: (some have been mentioned on here)

Questran: I was up to 4 packets a day and didn't see much difference. Many people do well with just one easy packet in the morning.

Pancrelipase - although this is usually given to people who's pancreas isn't working well, they've found that it helps some people with chronic diarrhea.

Octreotide (Sandostatin)- injectable meds, usually for slowing bowel for people with tumors.

I'm currently just doing ammonium. WAY too much (8 pills a day) and i'm on here looking to learn from you and and what your experiences are with whatever treatment you've tried.

I have seen improvement and my weight is inching back to normal, I recently hit 100lbs. Some days I have one or two bowel movements with soft formed stool and then the next day, I'm like a garden hose with VERY little warning. I'm wearing these underpants/diaper things that work pretty well. (Certainty from Walgreens xs)
another tip is to put a panty liner on with the diaper, that way, if you have just a tiny accident- like sometimes when I fart.. ay yiyiy) you can go to the rest room and toss off the panty liner and still feel ok.

Another thing is, seek professional counseling if you need it. It's easy to feel hopeless and I found going a few times was helpful. If your insurance or budget doesn't cover it, there may be something at your place of worship or possibly somewhere your doctor might suggest, like a support group.

Good luck to you all.

Apr 06, 2016
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I wish I could give you all a hug.
by: Nicole

I see my own experience in so many of your comments. I had 3 1/2 feet of my small intestine plus my ileocecal valve removed from an obstruction due to chemo and radiation I had 30 years ago to treat stage IV ovarian cancer.

That was 14 months ago and dealing with mystery poo has been tougher than when I had cancer. Mostly because it's so mysterious or as I like to call it, mysteriASS.

There are some things that I've tried that although they didn't work for me, I wanna throw them out there because they may be just what you need.

But first, Do yourself a favor and get an inexpensive (mine was $37 at costco) bidet. It is the best $37 I've spent in my life. There are all fancy ones but this one just attaches to your toilet and sprays clean water. My butt looked like a baboon's butt, it was so raw plus, at my worst, I was having diarrhea 17 times a day and getting cleaned up was exhausting. Just pushing a button, and then patting dry with like 3 pieces of toilet paper has made it much more bearable. I know you're thinking, I dunno..a bidet.. sounds goofy, how much could it really help? Believe me, it helps, the one I have is a BioBidet Elite. There are some really fancy ones that have warm water and a blow dryer but this one is just fine and my husband installed it in 15 minutes.

Here are things I've tried that didn't seem to work for me but I've done some research and they work well for others: (some have been mentioned on here)

Questran: I was up to 4 packets a day and didn't see much difference. Many people do well with just one easy packet in the morning.

Pancrelipase - although this is usually given to people who's pancreas isn't working well, they've found that it helps some people with chronic diarrhea.

Octreotide (Sandostatin)- injectable meds, usually for slowing bowel for people with tumors.

I'm currently just doing ammonium. WAY too much (8 pills a day) and i'm on here looking to learn from you and and what your experiences are with whatever treatment you've tried.

I have seen improvement and my weight is inching back to normal, I recently hit 100lbs. Some days I have one or two bowel movements with soft formed stool and then the next day, I'm like a garden hose with VERY little warning. I'm wearing these underpants/diaper things that work pretty well. (Certainty from Walgreens xs)
another tip is to put a panty liner on with the diaper, that way, if you have just a tiny accident- like sometimes when I fart.. ay yiyiy) you can go to the rest room and toss off the panty liner and still feel ok.

Another thing is, seek professional counseling if you need it. It's easy to feel hopeless and I found going a few times was helpful. If your insurance or budget doesn't cover it, there may be something at your place of worship or possibly somewhere your doctor might suggest, like a support group.

Good luck to you all.


Apr 04, 2016
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Life without my iliocecal valve and cecum
by: Anonymous

I have been following this thread since October of 2014, when I had my iliocecal valve and cecum removed as a part of my ruptured appendix surgery. I am one of the lucky ones who have only had a few bouts of constipation, easily taken care of by proper diet. I must add that everybody's anatomy is different, and everybody's body is where it is based on diet and events, like injury, and the body reacts differently. Several years ago I had my gall bladder removed and at that time I read up on the surgical procedure. I found one site that I didn't have to pay to read, which was a guide for surgeons. The nugget that I read talked about not bumping the common bile duct while the surgery was in progress to risk acute pancreatitis. It is amazing that a football player can get his gut knocked into next week and there may be no major problems. But bump the common bile duct and a serious pancreas inflammation can occur. So, everybody's body is different and it is difficult to predict the problems that may arise. After my appendix surgery, I ate a lot of kale, steamed about 15 minutes, with a little butter and salt and pepper. I began to have very good bowel movements. But that is me. You just have to keep plugging away with different diets to find out what will work for you. I do eat a normal, not high, fiber diet. Too much of anything is not good. When a doctor tells you to take an aspirin, don't take the whole bottle.

Apr 04, 2016
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Thank you!
by: Honesty

Thank you Bear. Any of your oncologists or gastro-enterologists should know whether you have that
IC valve or not. It's not complicated for them.
If they say you do not, then we would have a
rather complicated situation in which you'd have to find out about your surgery, etc.- Take care.

Apr 04, 2016
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I'll try
by: TheBear

I'll try to find out more about why my surgery has been so successful and pass along any helpful info. I've changed doctors several times and now I'm with the VA so it might take some time to find out who has my records.

Apr 04, 2016
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To The Bear, pleeease
by: Honesty

Dear Bear, please, I wish you'd ask your doctor if you still have or not have, the Ileo-cecal valve, which is the valve between the small intestine and the large intestine (also called colon), and let us
know the very important answer.
Because, although I do believe in miracles, the
rest of us could be doing something wrong OR YOU
COULD BE DOING SOMETHING RIGHT THAT COULD HELP THE REST OF US. Miracles can have an explanation!

Apr 02, 2016
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To the Bear
by: AnonymousChris S

If you still have your ileum and ileocecal valve, that could explain it. Otherwise, you're one of the fortunate ones.

Apr 02, 2016
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To The Bear
by: Anonymous

If you still have your ileum and ileocecal valve, that could explain it. Otherwise, you're one of the lucky ones.

Apr 02, 2016
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Am I a freak?
by: TheBear

I had the upper 1/3 of my colon and the entire secum removed due to cancer about 10 years ago, and although I do have occasional diarrhea I eat what I want, when I want, and as much as I want but don't gain any weight. My normal breakfast is steel cut oats. My doc says all my numbers (pages of them) are dead on. Also, I rarely am constipated but if I am a glycerin suppository takes care of it.
My small intestine is hooked directly to the colon. I don't have any of the problems talked about here. I'm 77 years old and my doc says I'm remarkably healthy. I guess the Good Lord is smiling on me.

Mar 30, 2016
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Anal lubricant
by: Anonymous

Equate Personal Lubricant Jelly(Walmart) or K-Y Jelly (same thing but more expensive) has been
working very well for me. Inexpensive, water-based and non-greasy. Best of luck.

Mar 30, 2016
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a little help
by: wildbill

Without a valve, excess bile gets to the large intestine -- and is an irritant there, making for diarrhea. I am one year since surgery and still trying to figure it out. A bile adsorbing med helps (Welchol for me) but it is such a balancing act! Also, Imodium (Loperamide). I'm taking 5 2mg tablets a day, about, sometimes more. They have a half-life of about 10 hours. Lomotil, on the other hand, has a short half-life of 2-3 hours.

If I take too much Welchol (6 x 625 mg) I get constipated -- and with no bile, there is no fat absorption - about impossible to gain weight.

I'm still trying to sort out what I can eat, what I can't. Yogurt and milk and anything with whey is definitely out. Probiotics also -- makes way too much gas! I think, too many bugs to far up, close to the stomach, instead of in the lower colon.

There are barrier creams that help with the sort anus. I use stuff I get on the internet (my dr. recommended) called "Calmoseptine". Comes in a squeeze tube.
Hope this helps. . . .

Mar 30, 2016
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To Ann
by: Dan

Try eating freeze dried blueberries. Also get a full iron panel with ferritin.

Mar 30, 2016
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To Ann
by: Dan

Try eating freeze dried blueberries. Also get a full iron panel with ferritin.

Mar 29, 2016
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Learning to live differently
by: Ann

Hello, happy to find this site. In May 2015, I had about 6" of my colon removed, the ileoceal valve was remove along with my appendix and a small umbilical hernia repaired. This was done following 3 colonoscopies all with a nasty polyp that just wouldn't quit growing in a precancerous state. I had been having serious pain in the ileoceal area and doctor's didn't feel one was related to the other. Glad to say the pain is gone since its removal. The diarrhea is a problem. My sphincter was damaged in child birth, so my ability to hold stools was compromised before surgery. Since surgery it is worse. Sad to say I must wear a pad daily. I must also wear black in case I have an accident. There are times I have no warning. Taking medicines are something I avoid, but am considering trying something. Suggestions? Does anyone have a suggestion for barrier creams? With bouts of severe diarrhea I bleed and become raw. Is there anything that works? Also, I continue to have very dark circles under my eyes-is this an indication of something? Thank you!

Feb 21, 2016
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no valve
by: Anonymous

hello had my illeocical vavle removed along with 12 inches of the bowel/colon due to crohn's. I have found that take magnesium oxide pills i do not get constipated. It has to be the oxide form to help with this problem. I get mine from allstarhealth.com and they are made by twinlabs. the price is good and they really work. I take two a day. My husband who has IBS takes one a day.give it a try

Feb 08, 2016
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Any help?
by: Anonymous

Hiya just came across this post, i'm desperate!

I was born 25 weeks premature and developed neutralising entrilitus (sorry can't spell it) and it started killing off my bowl, the doctors did an operation and removed a part of my colon and my ileocecal valve, my stomach/bowl would swell up when i was younger and once i went to the toilet it would go down again, when i reached my teenager years, it swelled again but stayed like it...its been swollen and distended for years now.

I'm 22 now and the doctors have tried everything from different medication to changing my diet, nothing has made my stomach go down, it's extremely embarrassing as i'm very very gassy and loud on the toilet and cuz i'm at uni in halls my flatmates have started saying things... the doctors have said they don't want to do surgery because "they don't know what they're going to find if they go in"

I'm reaching the end of my tether here :( anyone got any ideas or can recommend anything?

Feb 04, 2016
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Chris S.
by: Honesty

Chris, yours is a tough case. It's amazing you're still holding a job, and at 66! I would say with probably 90 % certainty that your diarrhea has
nothing to do with SIBO (Thank God!) b/c if it did, it would probably be an ongoing, daily condition, requiring antibiotics. But with all those feet of small bowel and some colon removed, and no ICV,
what else can you expect but some diarrhea.
I had 1 foot small bowel and the whole right colon removed (and of course, the ICV) 2 and a half years ago, and get loose bowels most of the time (2-3 BMs a day) and diarrhea sometimes. So, sounds like we're not doing too bad. Best of luck.

Feb 04, 2016
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5 years since surgery
by: Chris S

I had a bowel resection in 2010 as the result of carcinoid tumors in the small intestine. They removed 6.5 feet of small intestine and 30 cm of ascending colon and the IC valve. It's taken the better part of 5 years to get back to almost normal. I don't adhere to any particular diet. I have periodic diarrhea but it is manageable. I am 66 years old and still working. Not sure if the diarrhea is the result of bacterial overgrowth or not but the bouts only last a day or so...took cholestyramine daily for almost 4 years but rarely need it now..

Feb 04, 2016
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Thank you Penny and Anonymous
by: Honesty

I want to thank Penny (Crohn's) and Anonymous (Probiotics) for making me aware 1. of SIBO, of which I knew nothing about after 2 and a half years into living without ICV. 2. So important not to take probiotics in this condition of ours, unless you know you are depleted of your normal flora, in which case you should take a tablet or two, of not a very high dosage. I am a retired RN, who worked
in GI for 2-3 years, and had never heard of SIBO before!!!

Feb 04, 2016
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For Bob. Dealing with diarrhea AND constipation
by: Honesty

Dear Bob, I do have experience living without the
IC valve and have written several times here to share my "discoveries." I suggest you take the time to read what I and many others have shared here in
this great posting place. There's a lot of good
stuff. Best of luck.

Feb 04, 2016
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crohn's
by: Penny

I lost my ileocecal valve when they removed 15 inches of the end of my small bowel due to crohn's 3 years ago. I have had diarrhea since my surgery. I tried welchol and imodium and citrocil but these products gave me a stomachache. Eating bananas and blueberries worked for a while. But now I have Small Intestine Bacterial Overgrowth (SIBO). Apparently since the valve is gone, it doesn't hold back what should be held back. Most of the bacteria is in the colon, and without the valve, it starts to slosh into the small intestine - causing bacterial overgrowth. Now I'm on Flagyl and trying to follow the FODMAP diet to decrease symptoms. I wonder if any others have had SIBO with their ileocecal valve gone.The literature I've read said only 50% of the people with SIBO are living 5 years after diagnosis with SIBO. I wonder if it will clear up once I start having normal stools (if that ever happens).

Jan 04, 2016
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Probiotic
by: Anonymous

My oncologist abruptly switched me to a different GI doctor during my 6-month post surgery appt. Like Alice, I was having SIBO (Small bowel bacterial overgrowth). The first thing he did was eliminate the probiotic! And I was using a fancy expensive kind! It was making way too much growth, gas and diarrhea.
(I am not a doctor, just sharing experience.)

Jan 03, 2016
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New and helpful discovery
by: Honesty

RECENTLY TOOK LEMON JUICE BEFORE BREAKFAST TO CLEAN MY LIVER. To my surprise, my loose bowels becameless loose. I have been taking this half lemon squeezed in about 120 to 150cc of warm water, sipped with a straw to prevent the lemon from affecting my teeth, before breakfast and every other day, not daily. I HAVE HAD A CLEAR IMPROVEMENT of my bowel movements, which were too
loose and more frequent before. Now my first BM
is formed and I'm averaging 2 BM's a day. However
I do keep a proper diet of low fiber, no spices,
no coffee or alcohol, all of which promote BM.

ALSO IF you wish to benefit from the vitamins and
minerals you're missing by not eating enough good
veggies, simply boil them in water and drink the
resulting soup. Ask advice from someone who cooks
about amounts and boiling time, since length of cooking time will depend on WHICH veggies you are
cooking. This way you'll get proper nutrition. You may ad olive oil and salt to the soup for
flavor. Or even make a chicken or beef soup with
the veggies. Just make sure that the veggies are
well cooked, which you will know when they are
VERY soft. I make carrots, celery and spinach, and it takes me about 25 minutes of boil to make
them very soft. Hope this helps. Good luck.

Dec 21, 2015
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No illiocicle valve
by: Mags

Hi guys im a mom of a 7 year old boy who at 6 days old had 45 percent of his bowel removed plus illiocicle valve. He is non verbal and still in nappies. He could have between one to ten nappies per day. My question is can he control his bowel movements or does it just come on suddenly. As he is non verbal i have no way of finding out. And i dont know anyone else who has this? Any advice would be greatly appreciated.

Dec 19, 2015
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ileocecal/gabladder removed because of carcinoid
by: Anonymous

I had just under 4' of my intestines, ileocecal and gallbladder removed in 2005 due to carcinoid cancer.

I just found this site and wanted to tell everyone it will get better but it is a long and difficult journey. For the first full year I would have to go to the restroom 10 to 15 times a day, now more like 3 to 8 times per day. The big problem remains to be fatigue and if I have a few days of diarrhea my hemorrhoids swell and I will get a fissure. I recently found a GI doctor who prescribed nitroglycerin gel for my rear. This stops your annal area from tightening up which doesn't allow the fissure to heal. This has been a big help to me. I must say you will never be 100% back to normal but I have achieved about 90%, However it took about 3 years to reach this point but I'm sure it can be +/- a few months. Remember never give up and God is good. There are still times when I have bouts with diarrhea but I refuse to let it stop me from living my life. There are some days that I take 6 or 7 hot soaks but all in all it is way better.

The first 5 years I would do all the tests but due to Obama care it has become to expensive to do so, all my test had been clean and had to make a decision. God Bless and hang in there.

Nov 22, 2015
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To Alice-- B12
by: Chris

Administer the B-12 shot every month. The part of the ileum that was removed was more than likely the part that absorbs the vitamin..You can't get enough B-12 without the shot and lack of B-12 is directly related to fatigue.

Nov 22, 2015
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diarrhea / fatigue / fissure
by: wildbill

Right after surgery, they pushed Ensure. "This is what you have to eat/drink"! But it is loaded with whey bi-products and I am very lactose intolerant. Ensure just made for continual diarrhea, 15-20 or more times a day.

The inner anal sphincter's natural state is contracted, tightly, I might add. But the bile acid diarrhea gets expelled, tightly contracted or not, the liquid cuts a channel in the tissue (fissure). These are very very painful--and the more it hurt, the more tightly it closed, making even more damage. The Colon-Rectal doctor would do his best but the diarrhea had to stop first. So, my learning that "fat is fat" happened about the same time that I got 4 Botox shots to that sphincter to relax the sphincter muscles. That procedure really works but lessens "control" and I had about 4 "accidents".
The constant diarrhea is gone and my fissure is healing. After the surgery, I will never be "new again", but things are looking better.

Nov 22, 2015
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fatigue / diarrhea
by: wildbill

Alice! Thanks to this site, we are not alone!

For me, the diarrhea is directly linked to fatigue and exasperation and a negative outlook on the future. A diarrhea day was a "couch" day, no energy at all with a declining will to live. And then I am gifted with a Good Day and I love life again. The key for me was to reduce fat/oil intake. I had been told that animal fats turn up the bile output and to substitute nut butters. Three weeks ago I went to yet another gastro, a really gruff fellow. He said simply, "Fat is fat!". So for a few days, I ate nothing with fat/oil. Protein was limited to plain baked or pan seared white fish. That-- and my taking 6 WelChol (competing product with Questran) and 6-8 Imodium -- stopped my diarrhea COMPLETELY. After 8 months, I've had 3 weeks and 3 days of a bit of real life again. The only other GI medication I take is a small 7.5mg of Remerol (Mirtazapine). It tends to reduce diarrhea while perking up spirits (although usually at 30mg dose).

Alice, give that a try, cut way back on stuff with fats. I am hoping you get good results too.

Nov 22, 2015
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to Wild Bill
by: Alice

Hi Bill,
Yes I was having them every month - but stopped as thought they weren't doing anything. I should start them again as maybe they were helping, its so hard to know as im on so many different things. How often are you having yours? Do you get fatigue? What are your symptoms now besides diarrhea? I've never been told of Questran, what burning do you get? I

Nov 22, 2015
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To Alice and Wild Bill
by: Chris

Alice, are you getting a B12 shot? You must have that. I had my operation 5 years ago. I now take questran as needed for the burning, maybe once a week now. I am 65 but it took all of 4 years to get the diarrhea to be the exception rather than the rule..

Nov 22, 2015
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No ileocecal valve - terrible fatigue
by: Alice

Hi All, I've just come across this site and feel very emotional reading all your posts. I had my ileocecal valve removed along with 2/3 of my large colon due to bowel cancer 4 years ago at 30 years of age. I can cope with the diarrhea and constipation however the fatigue is rife! I have two naps a day and it is seriously sending me bonkers. Im so unhappy at the moment as i cannot find anyone who can help me. I have seen two GI doctors all who belive the fatigue is not cause by my surgery, my Naturopath believes i have SIBO and ive just been on antibiotic Rifaximin which has left me feeling worse. My immune system is the lowest its been in 4 years. Im actually on the verge of breaking point and so is my marriage. If anyone can help me please write. I am currently taking; HCL between meals, probiotic, liquid minerals, Vit C, Endep (for my nerve pain due to chemotherapy), magnesium. My barin fog is awful and so is my joint pain.

Nov 05, 2015
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Bile Management
by: wildbill

To Will, the good nurse who posted just recently, can you try to explain the bile thing?

These bile binders we take (Questran, cholestyramine, Welchol) are supposed to stop the severe diarrhea that happens when bile gets to the colon. And there are sensors in the small bowel that signal the liver to make bile to accommodate the fat in the bowel. It seems to me that the binders create a signal to the liver that there is a shortage of bile in the small bowel and please make more bile. So, it seems that using the binders make for the opposite of what we want. What do I have wrong in my thinking?

btw, my blood data from two weeks ago has my total cholesterol at 106 - thanks to the bile binders. The liver is drawing on all sources of cholesterol to build more and more bile.

Thanks for explaining what I am wrong about here.

Nov 05, 2015
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Cholestyramine adjustment regime
by: wildbill

As posted earlier, I lost 60cm of small bowel, valve and half of the colon 7 months ago due to carcinoids.

I just couldn't get cholestyramine to work, going from low dose to high dose and all in between. The gastro docs I been through (6 already) have no real recommendations on how to take this med, like, every other hour, 3 times a day, etc., and I just couldn't find a dose that stopped the bile madness.

Then went to Welchol at 3X. When that had no effect they jumped it to the max of 6X. Again, no real guidance on how to take during the day. I had been taking one with each meal (six small meals/day). Four days ago, I switched to 2 pills three times a day. That sort of worked for 3 days but today was diaper terrible. I actually took 7 Welchol yesterday and today trying to get control.

I'm seeing a new gastro tomorrow with at least some experience with resection patients. And I am bringing Sucralfate back into my regime - on top of 8 Imodium, 8 Lomotil and the 6 Welchol.

If I learn anything new tomorrow I will post. Thx
ps. trying to keep something constant, my diet is just oatmeal, bran buds (to ward off constipation) and nut butters. Sometimes fish works but other meats really screw me up! I think meat signal the liver to make lots more bile.

Again, trying to look forward, to those who have been through all of this, how long did you take cholestyramine, how did you taper off? Thank you!

Nov 05, 2015
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To anonymous
by: Anonymous

I never took more than two of the scoops of cholestyramine per day but that was enough to stop the burning. My diagnosis was sudden: I had a rectal bleed while at work and got very weak, sweating profusely. Paramedics were already on the scene (I am a first responder) and they send me staight up to our trauma center (Harborview Hospital in Seattle). After a endoscopy and colonoscopy, they saw the bleeding but could not locate it. So, they opened me up and found a cluster of carcinoid tumors in the small intestine. They took out 6.5 feet and part of the ileum and ileocecal valve, but the tumors were confined to the small intestine. I was lucky. There were no other symptoms before that incident. Good luck with your appointment on the 10th. It does get better!

Nov 05, 2015
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For Bob. Dealing with diarrhea AND constipation
by: Anonymous

I am a nurse by profession and an ileocecal patient as well. I wish I had occasional constipation like you! (They also cut
2 feet of my bowels b/c of a tumor). Usually
there are a lot more ways to deal with constipation than with diarrhea. When constipated, simply increase your fiber intake (fruits, veggies)or prune juice before breakfast. If you had diarrhea and then you get constipated for one or two days, that's all right. Bowels have a lot of holding capacity.
If it takes you 3 or more days to move bowels,
in spite of prune juice and fiber, then you have
a problem I do not understand. Write everything you eat AND drink, and then compare results. Avoid sodas! Best of luck.
Will

Nov 04, 2015
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Statins
by: Anonymous

I know a research doc who knew the research doc who lied about the data for statins. Most of the cholesterol is made by liver since it is an integral part of cell walls. The brain is about 70% cholesterol. LDL is high in people who have chronic disease relating to tissues. Centarians have higher LDL than those that die earlier. What is important is the triglycerides if those are high and the size of vLDL particles. Best way to get good lipid profile (assuming you don't have genetic cause) is to eliminate processed carbs. Boost the fat. Cook meat under 350 and eat closet to rare. When I went Paleo trying to fight what turned out to be colon cancer my good lipid profile got material better! But I couldn't lower waking glucose of ~105 in blood because I had cancer.

Nov 04, 2015
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Statins
by: Anonymous

I know a research doc who knew the research doc who lied about the data for statins. Most of the cholesterol is made by liver since it is an integral part of cell walls. The brain is about 70% cholesterol. LDL is high in people who have chronic disease relating to tissues. Centarians have higher LDL than those that die earlier. What is important is the triglycerides if those are high and the size of vLDL particles. Best way to get good lipid profile (assuming you don't have genetic cause) is to eliminate processed carbs. Boost the fat. Cook meat under 350 and eat closet to rare. When I went Paleo trying to fight what turned out to be colon cancer my good lipid profile got material better! But I couldn't lower waking glucose of ~105 in blood because I had cancer.

Nov 04, 2015
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5 Years to adjust ?
by: Anonymous

Chris, Thank you so much for posting of your experience! So, at 7 months, I shouldn't despair? Your post gives me hope.

Whelchol is a competing product to Questran (cholestyramine). Prior to Lipitor, etc., these types of meds were the only thing available for high cholesterol people.

And btw, I am suffering fissures from just weeks after surgery. Four Botox shots to the sphincter to keep it from spasms and making the fissures, and 4 or more very warm Sitz bath each day.

I am interested in how much Questran you were taking. I went from just a little, many times a day to three whole packets a day (a packet has about 4 teaspoons). Didn't make a difference. It just didn't work for me. And how did you reduce whatever was your "life-saver" dosage to mostly none.

And please tell me more about your carcinoid diagnosis. Mine came from a carcinoid tumor that mostly obstructed the lower end of the small bowel. It is said that a tiny fraction of carcinoid cancers get a diagnosis before it spreads to several organs. If your case is similar to mine, we are quite rare. Perhaps 1 in a couple million people. (based on 1-2 people per 100,000 get carcinoid and 0-5% of these catch it before it spreads).

Would you mind sharing the country where you live? I am in the middle part of USA and it seems carcinoid technology is much further advanced in Europe.

On 10 November I have an appointment with my first carcinoid specialist. Tomorrow I have an appointment with Dr. Jacobs, Indianapolis, a gastro who has helped at least a few people without valves.

thx again for posting!

Nov 04, 2015
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I'll try that
by: Anonymous

Thanks Dan

Nov 04, 2015
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@Chris: Ileocecal Valve removal
by: Dan

Try eliminating processed carbohydrate foods. Smelly gas? Try HCl with Pepsin. Undigested plant matter? Try digestive enzyme.

Nov 04, 2015
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Ileocecal Valve removal
by: Chris

Five years ago my ileocecal valve was removed along with 6 ft of small intestine and 30 cm of the colon during surgery for carcinoid tumors . Don't believe it when they say you will be back to normal in 6 months. It has taken the better part of 5 years to manage the diarrhea, but it does get better. I am now 65. Questran was a life saver initially, giving relief from the burning from the bile. I had also had my gall badder removed a year earlier, which didn't help matters. Now I rarely need the Questran and the fissures have healed. I still haven't found a GI doctor who knows anythng about diet, but I pretty much eat what I want and suffer through the occasional bouts of diarrhea. Gas gas been a problem. I don't take any medications other than the occasional Questran. I have not tried "welchol?" Any suggestions for gas relief?

Oct 23, 2015
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WITHOUT an ileocecal valve
by: Honesty

ADDENDUM TO MY PREVIOUS COMMENT: Drinking is just as important as eating. I found tap water to be a problem, less so bottled water. Still better if I added half a teaspoon of Baking Soda to a one gallon bottle of water to reduce acidity.

VERY helpful to avoid all sodas, alcohol and mango juice. Write everything.

After you eat a complete meal, that will produce a bowel movement, but it's only b/c filling the stomach stimulates the intestines to move, no matter what you eat.

HOWEVER the actual food you ate will have an impact in your bowels much later, at least 12 hours after you ate it. Drinks on the other hand act a lot faster.

Oct 20, 2015
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20 years of diarrhea -
by: Anonymous

20 years ago I was ejected from a car and subsequently lost my Ileocecal Valve along with a host of other broken bones and injuries. Like many of you I was told by the quacks ... I mean doctors that the diarrhea would stop on it own of course it didn't and at first they put me on lomotil but that made me feel fuzzy headed they then moved me to questran and that worked but it was in a powder form and never mixed well with water and tasted awful (like gritty orange dirt ) After fighting with my insurance to get a more steady supply of the questran i gave it up 3 years after starting. I then went through weeks of the worst diarrhea and stomach cramps of my life, I seriously couldnt go from the couch to the kitchen without having to stop at the bathroom along the way. After the 3 weeks my body had adjusted and I'm drug free but have intestinal swings from great stools to complete water. In the 20 years since this has started this is what Ive found has worked for me - it may not work for all.
The key is moderation on everything you eat. If it would give a normal person an upset stomach avoid it. Common sense and smart eating goes a long way, eat unprocessed food, raw foods, absorbent foods (like bread). Aside from food Exercise helps a lot - again ... in moderation. When I trained for a marathon I had some of the best BMs since the accident the good times never last but think of it as colon cleansing ;) even normal people get cut loose every now and then. Also and this may sound a tad dippy hippy but your state of mind and the environment around you plays a big part. I cut all the toxic people from my life and try to live as stress free as possible. I know I havent gone into great detail but reply back if you want to know what I eat (I will say I'm a bachelor so eatting the same thing day in and day out is par for the course) :)

Oct 18, 2015
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WITHOUT an ileocecal valve
by: Honesty

I had my ileocecal valve plus 2 feet of intestines
(one from small bowel, one from colon)removed on April of 2013. This is what works for me so far,
averaging 3 bowel movements daily: reduce drastically your FIBER intake, i.e: avoid beans, cereals, vegetables and fruits. WHITE rice, potatoes and pasta are ok. Avoid coffee (I now drink decaf) and everything with caffeine. Avoid
alcohol. Avoid hot spices, even black pepper.
If I eat fruits, it's about 6-8 grapes, chew on them to get the juice out, and spit the peel. I eat 1/3 to 1/4 of a banana. 1/4 of an apple. AND only ONE of these in a single day. Also half a leaf of lettuce plus one slice tomato, and so on. Very tiny amounts are better than nothing. Take vitamins & minerals (I have found GNC's to be really good. GOOD NEWS IS you may have all the "bad" stuff: bacon, eggs, pork, burgers, etc. without a problem, provided that you don't have high cholesterol or other additional health problems. This has worked for ME. But I strongly suggest you write down what you eat at each meal plus the number of BM's (bowel movs) you have each day, so you may find what helps you and what does not. We're all different.
Do not eat a lot at once since that helps BM. It helps to eat less, more times.
Walk and/or do some exercise, get sunlight and
keep busy but do rest when you need it. Good luck.

Sep 23, 2015
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Still GI stability
by: Wildbill

Thanks, Dan. I have cut back on the carbs but not much help. Diarrhea had cut a fissure and the VERY pain sphincter spasms that got me to ER. What a waste! They got the spasms and pain to stop but with Hydrocodon -- a constipater. So I was wonderful for one day and in Hell for the next days until I got Botox shots "back there" by the Colon & Rectal Care place. They have me sitz 3-4 times a day and the use of a compounded BAN cream to reduce rectal spasms.
The Oncologist switched me to a different gastro who put an end to Probiotic (contributes to overgrowth) and the Amoxcillin. Started me at 3 Welchol per day. The first two bowel movements are fine but the rest of the day is 5-8 watery diarrhea - endangering my healing fissure. I'm now at 6 Welchol and 6-8 Imodium. With just one day of this regime, it just moved my diarrhea from afternoon to evening - midnight.
I'm eating lots of nut butters to get calories (and fish) as dark meats seem to dramatically increase bile (and more diarrhea). And the nut butters are on breads, of course - carbs :(
If I haven't before, I should add that with the infection from the resection incision, I have a full-belly hernia - 4 inches wide. An abdominal binder led to backward flow and more overgrowth. I am now trying to get used to Spanx tee shirt.
. . . I eat every other hour, modestly, and have gained 8 pounds in the last 5 months from my low, one month after surgery. At 6'2", 178 lbs is skinny, so I am desperate to gain weight.
Any feedback and / or suggestion would be appreciated!

Aug 27, 2015
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WildBill and SIBO
by: dan

@WildBill your diet is fueling SIBO most likely. Bacteria feed on carbs. May need a digestive enzyme. I had similar operation and complications, oxbile and hcl enzymes seems to work best for me. Blueberry Freezedried and extract supplement too. Ginger tea. Good luck!

Aug 27, 2015
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great comments
by: Robarrington

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Aug 20, 2015
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getting to wits end
by: wildbill

They took the last 60cm of small bowel, ascending and a half of the transverse in March of 2015. The Galium-68 PET scan say they "got them all". The surgeons left me with immediate wound infections and that later caused a giant hernia -- that should be fixed (with risks of its own!)

I am having GI trouble, of course. It seems I am ok without cholestyramine now. I start my day with thoroughly cooked oatmeal fortified with nut butters for calories. The rest of the day is bread with jelly and nut butters. I am trying to get a stable BM before trying to add variety.

I have had nasty gas & diarrhea since mid July and finally ended up in Emergency Room with very painful anal sphincter spasms. They decided I had bacterial overgrowth and put me on Flagyl. That has helped a GREAT Deal in just 24 hours. I am off that now and still back to trying for BM rather than diarrhea. With the diarrhea I get fissures, very VERY painful.

Am doubling down on Imodium, Lomotil and Sucralfate (carafate). I am trying to get some weight on.

Jul 17, 2015
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Mark B
by: Dan

Try Digestive Enzyme and Blueberry supplements. Eat more fat (may need Ox-bile supplement), lower your simple carb intake (no bread, potatoes, rice). If you have bad smelling feces, try adding HCl+Pepsin. Good luck. No Ileocecal here either!

Jul 17, 2015
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Found out I don't have a ileo valve
by: Mark B

After my first colonoscopy today when I turned 50 I found out I don't have an ileo valve. I had surgery to remove a blockage is all they told my parents. I have been fortunate to have had pretty normal bowel movements most of my life. I had a high metabolism and if I ate a lot things moved along pretty well.

When I got older the metabolism slowed and weight gain started. I knew I had to eat or things would stop up again. At about 48 something changed and I was constipated all the time and if I ate fiber I have gas like crazy.

I did find that corn on the cob seemed to really make things worse, and that oat based products seems to help. I am trying to figure out what I can eat to keep things moving while also losing some weight. Exercise really doesn't seem to help with the weight too much I really have to cut intake without causing bowel issues.

Jun 28, 2015
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Kale
by: Anonymous

After some of my little and big intestine were removed, and knowing that changes were coming, I read that kale was good for the gut. Not lacinto, but standard kale. I cut the ribs out. I started steaming it (for about 12 to 15 minutes),adding a little butter, salt and pepper, and found that my gut really liked it. Smooth bulky move. No bloating. I recommend it. It may not work for you, but it worked for me. The single most benefit I found in the six months after surgery.

Jun 27, 2015
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Living with no valve
by: wildbill

I lost 60cm of ileum, the valve, ascending and half of the transverse colon 6 March 2015. So I am about 3 1/2 months post surgery. I am bouncing around between ideas and false starts, trying to find a way to control diarrhea, constipation, very bad gas and maintain weight. The diarrhea / constipation has made for a painful anal fissure. I am 67 years and dropped 15 pounds. I've gone from very active to barely active :(
Just this week I learned to cut back on oily nut butters (soy butter, almond butter, cashew butter, etc) that I had tried to eat lots of to get calories. Also, contrary to my doctor, reducing fiber to very low. Beef seems to trigger excessive bile and diarrhea. Fish seems to be OK.
I try to get 5-6 small meals a day but am not gaining any weight at all. I am using cholestyramine, 1/2 teaspoon 30-45 minutes after a meal. But I think that inhibits nutrient absorption and weight gain. And this past week, I am using 1/2 or 1 Imodium 30 minutes before a meal. A whole Imodium may be too much and make for constipation. This makes for a overly regimented day!

Thanks for this series of postings as it gives me a glimmer of hope. Oatmeal!

May 14, 2015
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Very similar condition, made good recovery
by: Anonymous

There is hope! My case is very similar to yours and I have made a nearly complete recovery, but it was very slow. I lost my ileocecal valve at age 20 due to a blocked intestine caused by a congental malrotation of the bowel.

I had chronic diarrhea for nearly two years, and lost tons of weight. I started at 155 lbs and was about 125 at my skinniest.

The good news is that now at 41 I have almost no digestive symptoms and I weigh about 165. The three things that seemed to help in the early years were: 1. a breakfast of oatmeal, cooked fairly thick, with almond milk seemed to prepare by digestive tract for the day. 2. Avoiding all greasy foods. 3. taking bile acid sequestrants, like Questran (doctor can prescribe).

After a year I no longer needed the Questran. After two years I no longer had chronic diarrhea, though I did have periodic bouts and some digestive discomfort. And I still had bowel movements with very little warning. By about 4 years everything seemed fairly normal again. However, when I do get diarrhea, it is still hard to recover. My technique now is to eat nothing for almost 24 hours, thus starving whatever nasty bacteria are at work (remember, without that valve it is easier for bacteria to move up from the large bowel into the small bowel) then make sure my first few meals are very mild. I will use immodium, but usually only need one dose followed by a few half doses.

So, the good news is if this happens to you while you're still young, it seems your body can adapt to it. It may take a few years but it can happen. I'm still pretty lean, but that becomes a blessing once you're in your late 30's. I live a very normal life and eat pretty much whatever I like, though I do tend to eat healthy anyhow (low meat, lots of fruits, veggies, beans and nuts).

Good luck and hang in there!

May 09, 2015
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response for Shawn
by: rob

Hi Shawn
I have tried Imodium and still use it from time to time but suggest CVS anti diarrhoea work just that bit better than Imodium.
I have taken two or three CVS/Imodium tablets daily for years and there appears to be no long term impact (according to my research and specialist advice) so don't worry just take them to stabilise and get some balance in your body and importantly your mind.
Take CVS tablets 30mins or more before you eat breakfast v important to it gets time to work.
The diet I will describe below doesn't put pressure on your stomach to kick start your digestion into full speed, it requires longer absorbtion which is what you need.
Breakfast: try plain whole rolled oatmeal cooked in water. I use half a cup oatmeal with about whole cup of cold water (you will figure out your own style) and bring to boil and stir for about 2-3 minutes, you don't need to soak oatmeal. The idea is to make it easy to digest and edible, but not so much that it will just run through the body (hope this makes sense). Important that you DONT use processed (quick) oats. You can sprinkle cinnamon or ginger on top, but NO milk or sugar or fruit.
A regular or herbal tea no milk or sugar is fine after oatmeal
Mid morning have plain rice cakes - 3 or 4 - no toppings.
Lunch: you can have baked beans, in Australia they are plain with low salt and not smoked or spicy (you must have plain), it was difficult to find these in USA, so try navy or cannelloni beans with a basic tomato sauce, have a ripe banana or apple or pear (peeled): or substitute brown rice for beans
For afternoon tea: have a piece or two or three of pumpernickel (plain) or once you are feeling more in control try adding some rice malt
For snacking during day try popcorn (NO butter preferred)
Dinner: have whatever you want, don't over indulge but be normal, unless going out to dinner, if so keep it more basic, no fancy sauces.
The trick is starting day very carefully and with military precision and that means you can go to work and do your thing with confidence. Fancy foods and sauces get your bile moving and negates the Imodium. I have lived successfully this way for more than a decade after similar medical situation as you. The longer you go the more you can experiment, for example when I travel I take a paracetamol as well after breakfast and that helps with the binding (and mental state so that I don't have to look for toilets all the time). Drink water and tea, no coffee or sodas.
Good luck
Regards Rob

May 05, 2015
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almost normal after trial and error lol
by: Shawn

hi everyone, when I was 22 I lost my ileocecal valve after I was in a bad car accident in 2006, along with a few feet of my large and small intestines. After my surgerys the Drs told me my diarrhea would go away on its own so I believed them, but when it never did I started to worry because I needed to go back to work before my insurance dropped me and I was unemployed. My diarrhea was uncontrollable and extremely painful, and I wasn't gaining my body weight back. I went from being 185 lbs. to 135 lbs the week I left the hospital. Nothing I ate helped at all, yogurt, cheese, nothing. I got desperate one day while visiting my father so I dug through his medicine cabinet for some anti diarrhea meds, luckily I found the plain version of Imodium, I took 2 like the bottle said and it slowed it down and in the first time in months I had some relief. After some trial and error I found that if I took 2 pills of the Imodium with the anti bloating added in, 5-20 minutes before each meal it made me almost normal again. For the longest time that's what I took, I was able to go back to work and live normal again, but I still had to watch eating junk food because crappy fake food always ran through me with or without the pills. I am down to just plain generic over the counter loperamide now with no Anti gas/bloating meds added in. I am 30 years old now, married, and our 2nd son is due any day now, I've been searching for a more natural way to cope with this so I could kick the meds altogether but I think that might be out of the question so far. My family and I eat almost 100% organic/non gmo foods now because their real food and their not loaded with fake ingredients and pesticides, plus they digest much better for my malfunctioning stomach lol. But at the end of the day I hardly ever have anymore explosive diarrhea or stomach pains and I'm pretty much normal as long as I keep track of my bowel movements. If I get some diarrhea I take 2 pills, and two more before my next meal, if I get constipated I go to 1 or 1.5 before my next meal as I try to move it along while not trying to have an explosive moment, I hope this helps someone out there. :)

Apr 16, 2015
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It's all beginning to make sense
by: rotngut

I was diagnosed with Crohn's in June 2014 at 49 years old. Initially went to the doc thinking I had a bladder infection due to the burning. After CT and chest xray, they also found pneumonia. I was hospitalized twice in a 2 week period, started on Pentaza, Humira, then Cimzia over the next 6 mos and had more side effects that original symptoms. In December CT showed NO improvement with meds so GI doc sent me to a surgeon. He found that in addition to the Crohn's I also had severe GERD which was the likely culprit of 4 bouts of pneumonia in 5 year period. Surgeon suggested Nissen Fundoplication of the LES to eradicate the GERD, aswell as the ileocecal resection. I opted to both surgeries at the same time so that they could be done laproscopically. During surgery the doc found that my cecum was the size of a coke can with a 98% blockage, my appendix was obliterated, and approximately 1/5 of my colon was removed. I won't go into recovery but I will say that the Fundoplication/Hiatal hernia repair has been successfull. The ileocecal resection has healed fine but the gut has awoken with a vengence! I've had two CT with contrast post op which show no signs of the Crohn's. So I asked my surgeon, PCP, GI why am I having so much cramping, soreness, bloating, diarreah in addition to joint pain, RLS to the max,not to mention the neurological side effects...confusion, inability to focus, memory... Then Monday of this week, my GI says it could be SIBO. When I looked up on the net I was like OMG!!! I am experiencing all these symptoms!! I don't know if the surgery caused this or if it was underlying to my Crohn's but I'm very bitter that my docs have put me through heck and back, made me feel like a hypochondriac when I knew something was still wrong with me. Since so many allergies to drugs it will be difficult for me but I believe that diet plays a MUCH larger role in all of this than any of my docs have suggested. I started an antibiotic/probiotic treatment plan today. From what I've read this may cause some immediate relief to the bloating etc., but it tends to come back that's why I'm researching the diet route. If anyone has any insight or suggestions on this please share and I wish the best to all of you out there suffering with rotngut!

Apr 10, 2015
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Removal and Issues
by: wendy

I had to have a serrated polyp removed that was connected to my ileocecal valve which has also been removed.

I have found I have to run to bathroom numerous times a day and cannot control my bowels at all anymore.

I have tried numerous medications, all of which come with more side effects and have not helped this issue.

I suffer from flatulence, bloating, cramping and worst of all, the need to evacuate my bowels without any warning.

Anyone else?

Mar 15, 2015
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Me too - additional comment!
by: Lynn

Oops! Think I got the types of fibre the wrong way round but can't find my comment to check!
Oats and barley are SOLUBLE fibre and they are the ones you want! Other whole grains are INSOLUBLE fibre and you need to take them more carefully! Sorry!

Mar 15, 2015
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Me too!
by: Lyn

I had a similar operation three weeks ago! I am 63 years old! Make sure you eat plenty of SOLUBLE FIBRE, rather than insoluble fibre to avoid both diarrhoea and constipation! That means eating oat products like porridge, good quality oatcakes and betavivo and using barley in soups and stews. Other whole grains are insoluble fibre and they are harder on the repaired digestive system, especially at first. Also, I take a live yoghurt every morning to make sure my bowel has plenty of good bacteria! These were destroyed by the high dosages of antibiotics I received after my operation. I use Danone Activia but there are others you could try. I eat plenty of fruit and vegetables without problems, as well as fish and poultry. Fortunately, I've never been a meat eater, because I suspect that might be harder for my bowel to cope with! I also don't attempt anything fatty or fried, at least for he moment! I can however, eat a little butter and cheese.
I hope this information helps!

Mar 05, 2015
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ileocecal valve missing
by: Anonymous

Cholestagel tablets, one with breakfast and one with supper.
They're expensive but they work - in the main! Types of food, ie fatty foods, cheeses, etc. do not help, but you learn to live with the consequences.

Jan 08, 2015
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Could it be Gadolinium? Hopeful again! NEW by: Kim-mune Krisis
by: Catherine

Kim-mune: Had you had any MRI's done w/contrast in your workups over the years? I have found some of same issues in pursuit of Lyme diagnosis (tested positive three times at Igenix but negative at Labcorp because they keep the criteria artificially high! I went 20+ years undiagnosed and untreated!)
Recently I'd done some research of my own and knowing I've had 7 MRis all with contrast Gadolinium (Magnevist brand for all of them) and some odd hardness to my skin andthroat, bilateral carotid stenosis, bowel fibrosis and elongation and calcification to my left styloid bone (I diagnosed my self and had it removed already, I am awaiting right sided surgery-left was taken along w/my cancerous thyroid!)

If you HAVE had MRIs get blood and urine tested thru Mayo-local hospital can do send outs, no need to travel! include this last paragraph if docs refuse! Mayo wont talk to actual patient but will accommodate your docs' questions. MAYO GADOLINIUM TESTING

http://www.mayomedicallaboratories.com

Page upon which "G" catalog tests appear:

http://www.mayomedicallaboratories.com/test-catalog/alphabetical/G


Gadolinium, 24 Hour, Urine
Gadolinium, Dermal, Tissue*
Gadolinium, Random, Urine
Gadolinium, Serum
Gadolinium/Creatinine Ratio, Random, Urine
Gadolinium, Dermal, Tissue, will need to be done if and when I test POSITIVE for GADOLINIUM In blood and/or urine.



If you are REFUSING to order any lab studies, I would like to request that you sign a copy of this letter and place it in my medical chart. You will also receive a copy of this letter via registered mail.
Mayo Medical Laboratories: Reference Laboratory services for hospitals worldwide
www.mayomedicallaboratories.com

PS: I also have some barium stuck in my bowel post barium swallow discovered only when I'd bled out during second bowel prolapse surgery, they had no clue WHY that happened and enevr investigated it, that took me 4 more years to figure out; recently I now have urehtral prolapse as well as IgG issues and many different types of infections! Lovely! Good luck let me know on my FB page if you have any ?'s ! Catherine Nichols Pogorzelski

Dec 26, 2014
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looking for help
by: Anonymous

Hi,

After doing fasting, since I thougy I was suffering from Candida I have had problems with my ileocecal valve, and the food doesnt want to pass it.. Havent met any good doctor. Any suggestions what to do?

Nov 27, 2014
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Hopeful again!
by: Kim-mune Krisis

In a nutshell, 51 years old; 33 year history of Restless Leg Syndrome (known as "the jimmies" back then; 28 year history of Crohns with multiple resections and removal of iliocecal valve in 1999; diagnoses with Menieres in early '90's, Multiple Sclerosis in mid '90's; GERD and erosive esophagitis in mid '90's; discoid lupus in late '90's. Remission (except for GERD and RLS) from 2001 to 2013 (after dissolution of my 18 year marriage and subsequent introduction of copious amounts of alcoholl) followed by severe onset of Rhuematoid Arthritis with scleroderma and Lupus features in 2013; gastroparesis and esophageal rigidity in 2014; rosacea in 2014. After more than 40 consults with specialists, no one can agree on a treatment approach, which is complicated by my extensive list of medication allergies (which includes most classes of antibiotics except the old penicillins, tetracyclines, and cephalosporins.). I have a high, unexplained and largely ignored eosinophil count, and my BUN and Creatinine are rising. I have had back to back cases of asthmatic bronchitis for 18 months, requiring extensive antibiotic therapy, multiple breathing treatments a day, and a close relationship with the makers of Diflucan. I eliminated gluten 8 weeks ago but improvement was short lived. Last night, in a fit of desperation, I typed in my list of issues in a Google search, one right after the other, in a streaming list and hit "search." What resulted astounded me. A mile-long list of articles about SIBO! Reading them is like reading a litany of the last 30 years of my life! But Ii need some guidance and recently fired all my docs..... Any suggestions? Thanks in advance!

Nov 08, 2014
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Lost in a motorcycle accident
by: Anonymous

I was in an accident in 2012, nearly impaled by the handlebars. By the time I got to surgery, 15 inches of the small and 2 of the large intestine, including ileocecal valve had to be removed. I've never been the same. In theatres I sit as close to the aisle as possible, I don't eat sooner than 12 hours before flights or long drives, I find out where the bathrooms are when I first get into a restaurant.
I have found though, to plug up, cheddar cheese, rice or noodles. To firm up, croissants from Costco or Starbucks. Not sure about other places. And to loosen up, well, pretty much everything.

I'm always trying to find new things to help with it.

One thing that hasn't worked for me that seems to work for others is fruits or vegetables. They are brutal and last about 10-15 minutes.

Oct 25, 2014
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Your own path
by: crohnsvet.blogspot.com

My ICV and 1.5 ft of ilium we're removed due crohns inflammation rupturing my intestine. I went septicand went into the OR for emergency surgery. Didn't find out they removed the valve until I read my chart. Life without it is horrible to say the least. I control the bile acid with Cholestipol/cholestid but I have 3-5 diarrhea movements per day. When it is to much I take Immodium. I have found that diet has absolutely nothing to do with symptoms except for fiber. The fodmap diet is a placebo, but if you make it work for you good on you. I second the advice on getting your b12, folate etc. Checked at least 2 times a year. If you have any questions or thoughts to share please go to my blog wew.crohnsvet.blogspot.com

Oct 20, 2014
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gangrenous appendix, with iliocecal resection
by: Bob

I had my gangrenous appendix, cecum, and iliocecal valved removed via open surgery September 1, 2014. I have had a few abdominal surgeries in the past, so after they tried laparascopic, they had to switch to open surgery. While they switched, my appendix burst. Three hour twenty minute surgery. Postoperatively, I now (Oct. 20, 2014) have pain at the anastomosis site and am constipated. No diarrhea. I have changed my diet, not eating any processed meat or other processed food. I am better, but the abdominal pain at the anastomosis is constant. I feel better standing or laying down. Sitting is painful. I have a hard lump that I can feel about two inches above the surgical incision and am seeing my surgeon in a few days. The lump is not the site of my pain. I believe the lump is the new attachment site (anastomosis). Hopefully, the surgeon didn't leave anything in there. I believe my recovery will be three to four months at least until I am close to 100%. Does anybody here have a recovery time for something similar?

Oct 18, 2014
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constipation
by: Anonymous

Hey Bob,

Carefree is a beautiful place to live!

One way to combat the constipation is to make sure you have good fiber, blueberries and raspberries work well for me. For us without the valve, we have to find that balance of just enough but not too much fiber. Natural fiber works best, rather than supplement fiber as that can cause gas and unwanted side effects.

Check out the low fodmap diet foods. A good program that I follow is from a dietitian, go to www.stephanieclairmont.com she has a great book that can help bring order to our diets and does infact work. I've had great results following her IBS diet.

Hope this helps, good luck.

Oct 18, 2014
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Blueberry Extract for Diarrhea
by: Dan

I have been testing the Blueberry Extract ('Life Extension' version) and am happy to say it works well to quiet the GI and eliminate diarrhea.

Oct 18, 2014
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illiocecal valve removed
by: Anonymous

My daughter is on gentamicin and metronidazole meds. And a very very strict diet. Work great for her. Ask your gastroenterologist.😊

Oct 07, 2014
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Study on Anthocyanins (Blueberry Extract)
by: Anonymous

Here is the study on Anthocyanins (Blueberry Extract) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3135784/

Oct 07, 2014
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Imodium
by: Dan

Rob,

Before Xifaxan 550 I was put on Imodium. All it did was slow down the motility but not the diarrhea. It sedated me subtly to the point I blew a red light and almost had a very bad accident so I had to stop it.

I would try the freeze-dried blueberries without Imodium and see how it goes.

Dan

Oct 07, 2014
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Blueberries
by: Rob

Thx will add blueberries to my diet and see.
I read that blueberries work because of tannins - must be why black tea works for me too...
Mind you without my morning Imodium to kick start the day nothing would work. Just means I take only two tablets to get me through.
Regards Rob

Oct 07, 2014
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Blueberries
by: Rob

Thx will add blueberries to my diet and see.
I read that blueberries work because of tannins - must be why black tea works for me too...
Mind you without my morning Imodium to kick start the day nothing would work. Just means I take only two tablets to get me through.
Regards Rob

Oct 07, 2014
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Blueberries
by: Rob

Thx will add blueberries to my diet and see.
I read that blueberries work because of tannins - must be why black tea works for me too...
Mind you without my morning Imodium to kick start the day nothing would work. Just means I take only two tablets to get me through.
Regards Rob

Oct 07, 2014
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Freeze-dried Blueberries
by: Dan

Hello,

I had my ileo-cecal valve removed with some ileum (~42 cm), appendix, and ascending colon. After some months I developed chronic diarrhea. After trying various interventions my doctor put me on Xifaxan 550 which stopped the diarrhea cold. I was on Xifaxan for 10 days (twice per day). After the course of Xifaxan I was told to drink 8 oz Kefir per day. After about 10 days my BM's started to trend towards chronic diarrhea again. At around this time I ate a bag of freeze-dried blueberries from Trader Joe's and my diarrhea stopped. I asked a research doctor friend if freeze-dried blueberries could have fixed the diarrhea. He sent me an article on Anthocyanins (blueberries are very high in them) "Protective Effect of Anthocyanins Extract from Blueberry on TNBS-Induced IBD Model of Mice" that shows it does work in the mouse model. I ordered Life Extension Blueberry Extract supplement to see if this works too since I don't want to be dependent on eating freeze-dried blueberries daily. I have not received these yet but will post back with my findings.

I was not losing weight so even though SIBO it seems I was not at a compromised state except for low phosphorus caused by ~50 days of chronic diarrhea. Have your doctor monitor B12, iron, folate, and ferritin to make sure nutrient absorption is not a problem.

Dan

Sep 17, 2014
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Tipp
by: Mum of Taliasin

Hello you out there,
my son, 13 has had surgery 2.5 weeks ago, where his terminal ileum, his cecum and this valve were removed. We started probiotics immediately after the ABs. He had the runs only for 3 days post surgery and improved really quickly. That said, we are generally on a very high fibre diet, without refined food... maybe some of the sufferers would benefit from a very potent Pro-biotic like Multiflora from Orthoplex (Australia). He is taking 2 a day....good luck to you all. Mum of Taliasin

Sep 17, 2014
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Tipp
by: Mum of Taliasin

Hello you out there,
my son, 13 has had surgery 2.5 weeks ago, where his terminal ileum, his cecum and this valve were removed. We started probiotics immediately after the ABs. He had the runs only for 3 days post surgery and improved really quickly. That said, we are generally on a very high fibre diet, without refined food... maybe some of the sufferers would benefit from a very potent Pro-biotic like Multiflora from Orthoplex (Australia). He is taking 2 a day....good luck to you all. Mum of Taliasin

Sep 08, 2014
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Tumor on Illeocecal Valve
by: Anonymous

I had a carcinoid tumor on my illocecal valve removed along with the right colon upto the transverse colon. My surgeon told me that once the body adapted to the change with in six months v. the previous 7+ multiple trips daily which were mainly diarrhea.

At this point I began to think, hey why would I want to eat any good food, if it comes out half an hour later. At least in my case the surgeon was mistaken.

It took upto 3 years before bowel movements returned to somewhat normal. Through this experience, it depends alot on your age in part as a time recovery factor. It does require an adjustment in diet. I can't eat greasy foods anymore lest the price is paid; aka indulgence.

Overall you can and will survive once this very important unassuming internal body part is removed.

Best Advice: research and be proactive with your medical team by asking the proverbial questions :)

Aug 25, 2014
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Less runs
by: Gassy Jack

I've been working with a naturopath & dietitian and almost have no diarrhea now. I still have a ways to go, but for the past 9 months my stools are less "muck" and more formed and loose. I don't have crohn's but diverticulitis. 10'small, ICV @ a bit of large hacked out.

I'm following a fairly strict fodmap/sibo diet. I do step out now and again knowing there will be consequences but far less than what was before. Also have done a great deal of detox of liver etc.. I am a pretty hard case due to a lengthy rock n roll lifestyle.

You have to be careful of the fiber you do eat, as well as keep it in just about every meal to a point. Stay away from sugars, artificial sweeteners, caffeine, cigarettes, all the artificial crap that is out there. High sugar foods and condiments can and will have a big role in this.

I suggest finding yourself a dietitian well versed in re-sectioning and this fodmap diet. Work with them in a diet that works for you, it's a long process but you'll feel better long run as well as stay healthy with the food you need to eat. A good naturopath is also a good idea because they can help clear out the waste that can result in reabsorbtion/backwash gets back in organs. That throws things out of whack.

I hope this helps, I suffered 17 years of this and just getting back to good in the last year. Best, GJ

Aug 18, 2014
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Feedback re ICV
by: Robert Australia

Thanks for your follow up comment - I will keep tweaking my diet, which has largely been successfull.
Doesn't make for much fun on Weekends if going out for lunch but it works and I retain my energy as I am not emptying my bowels all the time.

Aug 18, 2014
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Thx for feedback re ICV removal NEW
by: Anonymous

if you have lost most or all of your distal ileum your ability to absorb bile salts and fats would be almost gone. those two would cause persistent diarrhea, gas, and mucous with much discomfort. your colon does not absorb bile salts and fats and would reject it with fluid and mucous to flush it out. crohns disease would add another element to the puzzle which I am not familiar with.

Aug 18, 2014
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Thx for feedback re ICV removal NEW
by: Anonymous

if you have lost most or all of your distal ileum your ability to absorb bile salts and fats would be almost gone. those two would cause persistent diarrhea, gas, and mucous with much discomfort. your colon does not absorb bile salts and fats and would reject it with fluid and mucous to flush it out. crohns disease would add another element to the puzzle which I am not familiar with.

Aug 18, 2014
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Thx for feedback re ICV removal NEW
by: Anonymous

if you have lost most or all of your distal ileum your ability to absorb bile salts and fats would be almost gone. those two would cause persistent diarrhea, gas, and mucous with much discomfort. your colon does not absorb bile salts and fats and would reject it with fluid and mucous to flush it out. crohns disease would add another element to the puzzle which I am not familiar with.

Aug 17, 2014
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Thx for feedback re ICV removal
by: Anonymous

Thanks will check it out. I have also had bowel removed (twice over 15 yes ago - due to Crohns) so shorter bowel may also be contributing to my lack of control?

Aug 17, 2014
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response to "Diet to overcome diarhea NEW
by: Anonymous

I am not a medical doctor but it sounds like you have an e-coli overgrowth with a lack of good bowel flora... if the lack of an ileo valve is your only diagnosis. kefir and refaximin works well. SIBO might always reoccur though with the loss of the valve, and you would have to keep to a strict SIBO diet.
check refaximin side effects though.

Aug 17, 2014
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Diet to overcome diahrea
by: Robert

I had my ICV removed 20 years ago.
To stop pooing you must be VERY disciplined.
It took me 10 years before I gained some control and now I am in a better shape emotionally.
I take 2 or 3 Imodium each morning with water. Then wait 30minutes before eating breakfast.
Breakfast must be pure - I eat rolled Oats (not quick oats) cooked in water which is fibrous to provide 'grip'. NO MILK or SUGAR. You can add cinnamon sprinkles for taste if you wish.
30minutes later have tea - NO milk or sugar.
Mid morning have 'plain' rice cakes or corn cakes - they must be pure. Nothing else but grains. In Australia we have a great corn cake called Corn Thins by Real Foods.
For lunch I have navy beans cooked in tomato sauce (baked beans) and some fruit. Alternative plain rice and cucumber. Or falafel balls and cucumber. Or any combination of the above.
This should get you through to dinner.
Afternoon tea fruit and more rice cakes with honey.
Try this diet for a week before varying. Variations should start at afternoon snack.
Don't vary your morning diet as you must lay a strong foundation in your gut.
I have found you can't eat bread or other health foods as they have too many ingredients that go fast through your gut.

Jul 12, 2014
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More help
by: Anonymous

I had my ileosecal valve removed and lots of small intestine. After surgery, I suffered with severe and chronic diarrhea until a GI Dr. Tinkered with medications that finally have resulted in living a nearly normal life. I still have some gas and bloating, but compared to not being able to leave my home, I am satisfied.

I take Lotronex, Lomotil, Nortriptyline and watch my diet . In a pinch, I take Opium tincture for immediate relief. I found that the dosages of medications have to be adjusted and foods varied until you find what works for you. It took awhile, but Finding a GI doctor who will work with you was the answer.

Jul 10, 2014
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response to july 10, 2014
by: Anonymous

when I had my ileo valve removed it was during an emergency surgery and without my knowledge. I believe you should always be made aware when possible of what is going to be done to your body before hand, so that enabling you to study the pros and cons of the procedure. now that its gone, looking forward you should try different diets and probiotics to alleviate the symptoms of bacterial overgrowth.
your ileo valve is check valve primarily designed to prevent backflow of bacteria into the small intestine. if you have been prescribed antibiotics like vancomycin you must replace the good flora destroyed by these types of antibiotics with kefir, and yogurt. also confirm all of this with your physician. once again good luck

Jul 10, 2014
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Questions for anyone without a ileocecal valve
by: Anonymous

Did your doctor tell you he was taking the valve out?
If so did he tell you how this was going to effect you life?

I'm asking because I found out months after my surgery that the surgeon had taken it out. I also found out that it wasn't totally necessary to be taken out. So I'm just wondering if this is normal for a surgeon to not make the patient aware of what he is taking out of your body. And of course without this valve I'm having all the same problems as everyone else. Any comments would be much appreciated!

Thanks to all
John


Jun 13, 2014
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ileo valve removed
by: Anonymous

I also have had my ileocecal valve removed along with the majority of the colon and a third of the small bowel. I tried the SIBO diet, with only minimal relief. I still keep with the diet but for the last year been adding rifaximin to combat the e-coli. works remarkably well. its been the closest thing to a cure. every month I take the 10 day script. can cause tinnitus as side effect though... good luck

May 21, 2014
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Support group
by: Anonymous

Does anyone know of a support group or people to chat to about this who have the same condition, my wife suffers after having valves removed after finding she had endometriosis.
If anyone knows of one please e mail me snell1@hotmail.co.uk
Many thanks

May 03, 2014
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Living without ICV valve
by: Gassy Jack


I had my ICV valve taken along with 10 feet of small intestines @17 years ago. I've had nothing but troubles, along with hypothyroid now for about 4 years.

I'm finally getting my diet together however the problems I face are embarrassment of smelling like a bathroom after a fresh movement. Always gassy and bloated. As well passing gas when I walk. :(

What have you found to do to fix this? or at least minimize this issue?

Mar 22, 2014
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try the FODMAP free diet
by: Anonymous

yes i too have had my illeocecal valve and appendix and six inches- 3 on each side- taken out due to a growth there....this was 25 yrs ago and am still dealing with it- had to go gluten free 10 yrs ago and just found the FODMAP safe foods to eat and it has been a game changer . probably will always be thirsty and lower energy than before the surgery but at this point of my life, am just glad to be able to eat, not on any meds and feel good. E

Mar 22, 2014
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try the FODMAP free diet
by: Anonymous

yes i too have had my illeocecal valve and appendix and six inches- 3 on each side- taken out due to a growth there....this was 25 yrs ago and am still dealing with it- had to go gluten free 10 yrs ago and just found the FODMAP safe foods to eat and it has been a game changer . probably will always be thirsty and lower energy than before the surgery but at this point of my life, am just glad to be able to eat, not on any meds and feel good. E

Mar 22, 2014
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try the FODMAP free diet
by: Anonymous

yes i too have had my illeocecal valve and appendix and six inches- 3 on each side- taken out due to a growth there....this was 25 yrs ago and am still dealing with it- had to go gluten free 10 yrs ago and just found the FODMAP safe foods to eat and it has been a game changer . probably will always be thirsty and lower energy than before the surgery but at this point of my life, am just glad to be able to eat, not on any meds and feel good. E

Dec 31, 2013
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many people suffer needlessly w/digestive issues....
by: Anonymous

anyone suffering problems related to digestion should go to listentoyourgut.com ....most people don't need to live with irritable bowel symptoms and can heal by getting rid of overgrowths of bad bacterias and replenishing the colonies of good bacterias while giving nutritional & mucosal healing support.

Dec 03, 2013
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No problems
by: Anonymous

I had my ileocecal valve and about 7 inches of colon removed a little over a year ago. It was due to a polyp on the valve, and so I did not have any colon problems before the surgery. So my experience relates ONLY to removal of the value and a fairly short piece of colon.

I would say that within two weeks of the surgery, my stool was firming up to the point it would have been OK. It continue to firm up and within a month it was pretty much normal. Since then I have changed my diet (very high fiber, lots of fruit and veg) so my stool is naturally softer/looser (but definitely not diarrhea). But if I am travelling and go back to a more "normal" (not so much fiber) diet, my stool goes back to very being very solid (probably what most people would call normal). I've heard I might have more gas, but due to my change in diet, it is really hard to say. I also don't think I have more BM than before.

My advice is to be very careful when you read about people's health stories on the web - unless you know their COMPLETE health story, then what they say might not apply to you.

Dec 03, 2013
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Welchol has helped me
by: Carolini

Hi there,
Back in 2002 I had my ileocecal valve removed when in surgery for a ruptured appendix. I have had chronic diarrhea since. I was switched from cholesteramine (sp) to welchol several years ago and found it much better, not so much burning. I would take 5 625 mg tablets per day. Since having a blocked bowel complication thus summer w a hysterectomy surgery I'm now down to 2 tablets a day. I still have what I call breakthrough diarrhea but can counter it with Imodium. Hope thus helps!!

Nov 14, 2013
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Resection of ICV and 20cm of terminal ileum
by: Penelope

Six years ago I lost my ICV with 20cm of the terminal ileum due to blunt trauma to my abdomen in a motor vehicle accident.

The past years have been very traumatic as I had to come to terms with this sudden change...I still have watery stools 5 times per day. I am tired all the time and was told by the doc that it would not even help to take a B12 supplement as the section where this is absorbed is gone. I was treated for helicobacter and have lately switched to an extremely unhealthy refined carb diet, as this seems to slow down the bowel movements. Sometimes I only have 3 sessions in the toilet. Btw, I also had my galbladder removed....so you can imagine the amount of acid my already weakend systems has to deal with. I am tired and fed up with drs as nooday can really give good advice about living with this altered system.

Oct 11, 2013
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illiocecal valve help
by: Anonymous

My daughter has 1/3 of small intestines and illiocecal removed. She is taking Gentamicin 1 week then
Metronidazole (flagyl) the next. 13 years she has been on this. Saved her life. Granted she has a very very limited diet. No lactose or tomato based foods.
Talk to your Gatroenterologist. Still has loose stools but it helped soooooo much. Hope this helps you.

Sep 12, 2013
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Surgeon??
by: Lisa

Cousin just diagnosed with cancer of ileocecal valve and small intestine. Who does this surgery ? Rare cancer to see

Aug 28, 2013
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ileocecal valve removed
by: chris

2 and a half years ago I had surgery for carcinoid tumors in the small intestine. surgeons removed six and a half feet of small intestine and the Ileocecal valve.I can go weeks at a time with semi normal stools and then I'll get a bout of diarrhea that lasts a few days. I take cholestyramine during the periods of diarrhea to combat the burning-I had not heard of xifaxin

Aug 28, 2013
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ileocecal valve removed
by: chris

2 and a half years ago I had surgery for carcinoid tumors in the small intestine. surgeons removed six and a half feet of small intestine and the Ileocecal valve.I can go weeks at a time with semi normal stools and then I'll get a bout of diarrhea that lasts a few days. I take cholestyramine during the periods of diarrhea to combat the burning-I had not heard of xifaxin

Aug 28, 2013
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ileocecal valve removed
by: chris

2 and a half years ago I had surgery for carcinoid tumors in the small intestine. surgeons removed six and a half feet of small intestine and the Ileocecal valve.I can go weeks at a time with semi normal stools and then I'll get a bout of diarrhea that lasts a few days. I take cholestyramine during the periods of diarrhea to combat the burning-I had not heard of xifaxin

Aug 19, 2013
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Living without an ileocecal valve
by: Anonymous

To Elliana's parents It may be helpful to know that our son, now 19, had surgery at 3 months, to urgently remove 20 cm of bowel including the ileocecal valve and appendix. Although he did have some food allergies in childhood, particularly dairy, he has outgrown these and now is only allergic to peanut and uncooked egg, which will make him sick. Apart from that, he lives a full and normal life, now away at University, and has no lasting effects other than an impressive scar!

Aug 16, 2013
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Beautiful baby girl suffers w/o ileocecal valve
by: Anonymous

My darling 18month old daughter had her ileocecal valve removed as part of emergency gastric repair surgery immediately after her birth. She initially had an ileostomy that was taken down when her small & large intestines when were successfully reconnected at the age of 2mo old. Since then, she has suffered daily from painful, acidic, loose, frequent (10-12x daily)& quite frankly traumatic bowel movements. As a result, she suffers enormously from bouts of blistering diaper rashes that cause immense pain. I change her almost immediately after she passes stools, but the acidic nature of the stool just literally eats at her skin upon contact.
She is the most kind, sweet, funny, smart, loving & JOYFUL child there ever was. It is enormously painful to watch her suffer & feel completely helpless. We have tried everything. Dietary changes, probiotics, dietary supplements, medications, and prayer...
We are desperate to help our angel...any suggestions or advice would be greatly appreciated.
Sincerely,
Elliana's mommie & daddy

Aug 08, 2013
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HOW DO YOU GET XIFAXIN PRESCRIBED?
by: Martha May

I had my ileocecal valve removed in 2006 after going septic while in the hospital for a minor hernia repair. I was in a coma for 4 weeks and woke up with an ileostomy. That was reversed months later, yet I still had chronic diarrhea. I went to my surgeon, my GI doc, and my nephrologist (kidney transplant), yet no one had any answers. I also went to Mayo, who also provided no answers. Then one time they were reading my surgical report and the GI doctor read "removed ileocecal valve", and I said "Whoa - what's that?" It was only then I realized what a future problem I had.

I have had chronic diarrhea since then. At one point it was so bad I traveled to Dr Andrew Weil's alternative medicine clinic, and it was only there that they suggested I get my GI doctor to prescribe Xifaxin. Within 3 days of starting it, the diarrhea had improved to an annoyance instead of making me want to kill myself.

Since then my insurance (Cigna) repeatedly refuses to cover Xifaxin because it is not FDA approved for that purpose, and I cannot pay for it out of pocket.

How do you get insurance to cover that, and are there any other medications that can also help?

Thanks.

May 08, 2013
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ileo valve loss and complications
by: gm

i have lost my ileo valve along with the majority of my colon and a few feet a small bowel. i am just coming to terms with this. i am on xifaxan now to clear up bacterial overgrowth and sublingual b12.i have lost 45 pounds since the onset and generaly fatiqued with mucusy stools. diarrhea mostly gone it seems no need for cholestyramine since xifaxan. it appears by the posts i read here that were all not in the best of circumstances. if and when my condition improves i will be sure to update. good luck to all

Mar 02, 2013
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Colon Cancer
by: Arch 83

3 years ago I had 12" of my colon removed for colon cancer including appendix and the ileocecal valve.After returning home I had a lot of diarrhea. My GP had me on high fiber supplement which did not offer any relief. I then saw my gastroenterologist who told me that without the valve, bile can enter the colon and cause diarrhea.He put me on Olestyr which seems to help.

Feb 19, 2013
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ICV Removed
by: ZnadYnot

I have been without my ICV since 2006 and have yet to truly adjust to the results. I was misdiagnosed with acute appendicitis (actual diagnosis was perforated diverticulitis) and had to have a small portion of each intestine, my appendix, and my ICV all removed.

For nearly 7 years I have not had a solid stool unless I'm severely dehydrated. Although I have not had to deal with the apparently common constipation problems, diarrhea and loose stool is an unfortunate side effect that I don't think I'll ever get used to.

Like a few others here, I also suffer from excess fatigue/lethargy likely related to my lack of this important anatomical feature. The only thing that I've found to counter this is taking B-12 supplements and that only brings my energy level up to what I would consider slightly below normal. But, I suppose, it's better than feeling exhausted all the time.

I guess, from reading what others have been through, I've been pretty fortunate in the side effect hand I was dealt. Sorry I don't have any real advice for anyone, but it seems that none of us have found any physicians that know what to tell us either. Good luck to all of us!

Jan 27, 2013
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no ileocecal valve
by: E. L.

My ileocecal value was removed 25 years ago and still dealing with it. Latest effort is a diet low in oxalates and fat.

I can eat an egg, but not a fried egg. Low oxalate diet is hard but causes less gas and bloat, so it's worth it. I eat the medium oxalate foods from time to time but the high ones are out of my diet forever. Good luck to all.

Mar 21, 2012
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I've done it..
by: Anonymous

For the past almost 7 years, I've lived without my ileocecal valve. It was removed because one of the lymph nodes in my groin pushed my small bowel through the valve, into the large bowel, and all of those parts were removed. It took several months to figure out how to eat again, and this is what works for me.

Breakfast: half cup organic hemp granola with black cherry juice.

First Lunch, a couple hours later: vegetables only (green salad, veggie salad or soup).

Second Lunch, a couple hours later: vegetables only (green salad, veggie salad or soup).

For the first 2/3 of my day, I fill my belly with easy to digest veggies. After that I have no problem eating whatever food I prepare for my family. I just eat smaller amounts. And 2/3 to 3/4 of all my food is vegetable - every day. Ok, I'm able to do this about 80% of the time. Traveling is difficult.

However... it really is a prescription for health!

Oct 27, 2011
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Born without an ileocecal valve
by: Anonymous

I'm 60 years old and never knew that I was born without an ileocecal valve until I had a colonoscopy when I was 56. I've lived with constipation as my primary condition, with some bouts of diarrhea now and again.

Looking back, some of my problems are no doubt due to small intestinal bacterial overgrowth. Through my 40's i had chronic fatigue and undiagnosed fibromyalgia, but when I found a naturopath who tried antibiotics for my greasy scalp psoriasis, voila! Things got better quickly.

Fasting has always made me feel good, too. In addition to the missing valve, i also have a highly sensitive colon (like in IBS)-- feel everything that moves through me.

But when I read about your strong fears of not having a valve, I only want to say don't imagine problems before they occur.

Work with your body: Keep things moving. Don't eat fermentable carbs so you aren't feeding the bacteria. And learn to notice when you need one of those good traveler's diarrhea antibiotics (it stays in the gastrointestinal tract and doesn't treat whole body).

SSC

Aug 08, 2011
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Life without an ileocecal valve
by: Battleaxe

Two years ago, because of a cecal volvulus that was not corrected in a timely manner, I had to have the last 18 inches of my small intestine, the cecum, and 12 inches of my colon removed, as it was all necrotic at the time of surgery.

Life has never been the same. I haven't been able to find any physician to offer advice, and I just live each day, never knowing how I'm going to feel.

I have chronic diarrhea (even in the middle of the night), I take B-12 shots monthly and take liquid vitamins (including iron), because my body doesn't absorb those nutrients normally.

Often times, I feel completely enervated, and I don't feel like doing anything. I am learning that this may be because bacteria backs into my small intestine since I don't have the cecum or ileocecal valve, and this may be causing my lethargy and weakness.

I am grateful for my life, but I am fearful about what the future holds for me in terms of my health. Any advice would be appreciated.

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