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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Sep 08, 2014
Tumor on Illeocecal Valve NEW
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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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