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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Feb 08, 2016
Any help? NEW
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
Chris S. NEW
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
5 years since surgery NEW
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
Thank you Penny and Anonymous NEW
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
For Bob. Dealing with diarrhea AND constipation NEW
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
crohn's NEW
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
Probiotic NEW
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
New and helpful discovery NEW
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
I'll try that
by: Anonymous

Thanks Dan

Nov 04, 2015
@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
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
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
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
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
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
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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Aug 20, 2015
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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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