Consequences of Removal of the Ileocecal Valve - RS Hemi

[Willym65]

You are one of the lucky ones!. I had the same procedure about 2 years ago and I have been trying to find a solution ever since. I've a tried different brands of probiotics as suggested by my surgeon and have started to walk daily as she said that also helped. In the last few months I have discovered a new probiotic called Benebiotic that has 15 different strains of bacteria that seems to be working wonders for me. Along with taking a couple of gas aids before going to bed at night, I can honestly say that I have had no loose stools, pain or diareha in the last 2 months. It's like I finially found the right combination. I'm down to 1 or 2 perfertly formed BM's during the morning. At the moment, life is good! I don't feel like I need to take a prota-potty with me everywhere I go now or make sure that there is a bathroom close at hand. I use to dread traveling, but no longer. I am still wondering that since the ICV is gone and bile salts can enter the colon, what the long term affect is? Also, since the IVC site is responsible for the absorbion of vitamin B-12 (which we all need) what affect will the lack of that have. Is there someway else to get B-12 into our system?

[weisssoccermom]

I know nothing about this but when I was approving a post in this thread, something caught my eye. Due to this type of surgery, are bile salts entering the colon? (The last poster seemed to indicate so). IF this is the case, then PLEASE, talk to the doctor about a drug called QUESTRAN. It was initially used for high cholesterol (a much older type of this drug) but doctors found that for diarrhea caused by gallbladder removal (due to too much bile salts entering the digestive system) this drug worked wonders! Again, IF the surgery described in this thread enables bile salts to enter the colon, which is then causing diarrhea, try QUESTRAN. A person not using it for cholesterol reasons does not have to take the full packet/measurement and the amount taken can be tweaked for the individual. This drug was a lifesaver for me after my gallbladder surgery for many years when the normal anti-diarrhea drugs like Immodium did nothing. Diarrhea caused by excessive bile salts in the colon will not be controlled by Immodium or other normal anti-diarrhea drugs.
Jaynee

[jollygreen17]

I had 200 cm of small intestine removed along with the ileocecal valve and 30 cm of colon during surgery for removal of carcinoid tumors in the ileum in November of 2010. I have been cancer free but I'm still experiencing periodic diarrhea, sometimes severe, followed by days of somewhat normal stool. I am still taking cholestyramine and lomotil, but not as much as before. I noticed today that some identifiable fecal matter showed up in a bowel movement nearly 4 days after eating a meal, but I have had many other bowel movements since then. Can other waste matter "pass over" other matter in the colon?

[Lifelong Battle]

To all who are listening,
I had telescopic bowel at 22 months old. At this time in the 70's little was known about it in my small town. I almost lost that battle. 30 years later, after dealing with your same situations and a few heckles from my current co- workers, I went back to the gasternerology dr.- probabaly spelled wrong- and had him take another look to see if he could help. He just told me to watch my diet like all the others have over the years. So, I had a second opinion with my current Dr. and this guy was a genious to me. He explained my condition to me fully and how my body works with a lack of a I.C.V. It all made sense. He told me that the bacteria in the large intestine were being exposed to foods that were previously broken down by the small intestine. The bacteria in the large intestine were eating it up like candy causing gasses to build up in the large intestine and push the waste out before it was ready to pass on its own. Hope that makes sense. So to cure the problem I needed to "bulk up" on fibre foods to slow down the process. He also told me to eat smaller more frequent meals and watch my carb intake. I made an appointment with a dietition an she helped to explain the difference in carbs and complex carbs. Complex carbs take longer to break down. She gave me a list of foods to try and a list to avoid. The Dr. also suggested a fiber additive like citrucel( not metimucal). There is a difference in fibre and metimucal is the bad one.
After trying this for a few weeks I an proud to say that I have been constipated for the first time in my life. I was regular for about six months with my new diet and exercise but I have let it all go just to be sure it was what helped. Well what do you know. It is all back. The pain, the bloating, the 5 or 6 emergency bowel movements it is all back. Now all I have to do is get back on my diet and watch what I eat. The biggest helpers in my diet were brown rice, oatmeal and fiber bars. Oh, and the citrucel. I think it can be controled but you have to find the right doctor.
Hope this helps! I owe a big thanks to those hecklers. Even though they are my friends, their opinion mattered enough to me to take another look into my problem. Without them I would still be hopeless!

Hi Lifelong Batle,

Your explanation really helped... Are you still on that diet? How is it going?
I'm interested in more details as my 7months old child had telescopic bowel last days and doctors had to remove cecum and his ileocecal valve .

Surgeons tried to calm us down that on the 'long run' he will not be impacted in a negative way and he will be able to have a normal life...

Can somebody advice if they know similar cases? Should I try to find somewhere were to put him an artificial ileoecal valve?

Lifelong in those 30 years without ileoccal valve did you also had SIBO - small intestinal bacterial overgrowth ?

Thanks

I would be happy to help you or any others as to what I know and what i have learned over the years with this condition. I would hate for another life to be hindered by all of this if it is unnessary. Feel free to email me with any questions and i will answer the best i can. I only wish all this info was avaliable to me growing up. Happy to share info.
lnc_rbrt@yahoo.com

[hmill]

Hi Lifelong Battle,
I had my ICV removed about 2 years ago, and have had a very similar experience.
My doctor told me it was "probably" because of the bile in my body-
The ICV is supposed to serve as a valve that keeps bile out, but once you remove it, sometime the bile goes where its not supposed to.
So I've been on cholestyramine(same as Questran) as one person has mentioned here, for about a year, and it has helped only a little.
I've realized over time, trial and error that oatmeal and more fiber has helped me significantly. Plus I try not to eat any heavy, fatty foods like cheesecake. They give me a nausea, and gnawing feeling in my stomach that lasts around 2 days.
I've recently started juicing, with a focus on vegetables that help digestive health, like cabbage, celery, and have been feeling quite good lately, with increased energy, and firm stools. Previously I would have trouble digesting some raw vegetables.
Though I'm doing better than I was a year ago, I'm still experimenting and trying to find better foods to eat, and more variety, and just wanted to ask if you could share your recommended diet regarding complex carbs, or any other specific foods that have worked well for you.
Thanks!
HM

[Guest]

I had part of my colon removed as there was a polyp on the valve between the upper and lower colon that could not be removed without surgery. I did not fare well after the surgery and was inn the hospital for over a week. After that for month and months, I had lots of bowel troubles. Enough to really change one's disposition. I was getting better over time, but not much and the going was slow.

Well our daughter had gone on an almost vegi diet (Dr. McDougal) and lost 30+ pounds, and feels great.

Well I tried it.

No animal fats, lactose free milk, no cheese, fish or eggs. Oatmeal for breakfast, salad for lunch, vegi chili, past with vegi sauce, for dinner, foods like that.

4 days later my colon was normal almost, and better than it had been for years.

I also have lost 26 pounds and feel fine.

[mike r]

my son was 12yrs old , car accident, seatbelt broke 2 vertibra, ruptured large bowel ruined ilelcecal and ruptured small intestine 3 places. He had 9" small intestine, ileo cecal, apendix ,and 5" of bowel removed and back fusion and broken arm, hospital sent him home wiith pandol even after a second opinion . I checked on him at 3am he was cold ,grey, and unconsious, I took him to emergency { different hosp} HE was under the Knife within 20min. because the infection was through his whole body by then they did
repairs as lited ,his stomach was left open for 6 days to monitor the infection and repairs all this was done while in traction for his spinal injuries after7 days they operated on his back. At since he turned 18 he has been working as a plasterer, extremely hard physical work almost no tiolets and 50km drives. What i will tell you is what worked for him may not help you but if you are serious try it.... We found to eat 5 times a day jn small portions, we also found since the op his gut is now yery sensitive to some foods keep a exact diary . some foods go straight thru you others u can retain .anything with wheat is in 1 hole and staight out dairy only in very small portions no greens no tomatoes no onions cucumber .. I sugest you might start here."" I am no doctor"" No he does not very often get solid stools But he can easily control his bowel movements and hold his motions for hours.another indicator is your breathe blow into something and smell it if it smells foul you might be in for a bad day. There is no real help available... I can tell you he now
lives a full and normal life . With his only problems reflux abd his breathe I can only hope this helps you.. P.S. YOU MUST GET VITAMIN B12 INJECTION { NOT PILLS} around every 2 months PILLS are no good with our problem.. YOUR PROSESS OF ELIMINATION MUST BE EXACT. wishing you the very best of luck

[vilan]

I found a natural remedy=bananas:

Ten years ago I had a major bowel resection from my Crohn's disease, and in the operation, my ileocecal valve was removed. I had every possible symptom mentioned here as well as daily bloody stools causing enough of a blood loss to knock me out. By accident however, 2 years ago, I ended up eating 6 bananas in one sitting (because they were all that was available), and discovered that the next day was the first one with no symptoms.

In the past 2 years, as long as I religiously eat at least 6 bananas (or more), I am fine. If I miss a day or two, the symptoms return. The happy news is that when I resume eating the bananas, I go back to being symptom free. By the way, after eating the 6+ bananas (at breakfast, usually coated with cashew butter or cream cheese to make the meal more appetizing), I can eat almost anything I want at dinner- even spicy foods and things definitely not on my prescribed Crohn's diet. (I skip lunch because the bananas curb my appetite, and thus despite the high caloric content of bananas and cashew butter, my weight is stable.)

Try the 6 bananas diet yourself. The first week may create bloating as you adjust, but that will soon go away. I am 6'2" and maybe you can get by with 4 bananas if you are smaller. If you try this, perhaps you can report your results.

[Mai-tai]

Lida, I have the same issues, since my operation occured 5+ years ago.
I struggle every day with the same fears, have you obtained any soultion on minimizing the Spontaneous bowl movements. My Dr's say oh well


Maiu-Tai

Hi all...

I saw my surgeon yesterday and since my right-sided hemi-colectomy with removal of the Ileocecal Valve, he told me that I may, for three to six months, experience alternating diarrhea and formed stools, which is exactly what is occurring. What I don't understand is, why when I feel the diarrhea oncoming, I can't control myself at all, and have all of 5 seconds to get to a bathroom, but can control myself when I'm ready to have a formed stool. I've been reading alot of posts whereby people who have had the same surgery as myself, have had their doctors say the same thing, but state that the diarrhea has never stopped, and I'm concerned that I will never be able to go anywhere again without the fear of having an awful, messy accident in some public place!

My surgeon told me that the Ileocecal Valve is responsible for controlling the flow of fecal material from the small intestine into the large intestine and losing it, makes one lose that control. I'm also reading on the net (see info below), that without this valve, toxins can build up/back up in your small intestines and make you sick!

This has me concerned.

Can anyone illuminate on this subject?

Thanx,
Lida

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What is the Ileocecal Valve?

The Ileocecal Valve is located between the ileum (last portion of your small intestine) and the cecum (first portion of your large intestine). Its function is to allow digested food materials to pass from the small intestine into your large intestine. The ileocecal valve also blocks these waste materials from backing back up into your small intestine. It is intended to be a one-way valve, only opening up to allow processed foods to pass through. Ileocecal Valve Syndrome

When the ileocecal valve is stuck open waste products can back up into the small intestine (much like a backed up kitchen sink drain) disturbing your digestion and also creating unhealthy toxins that are absorbed into the body. Also, if the ileocecal valve is stuck closed waste products are prevented or constricted from passing into the large intestine.

Unfortunately, this disorder is often overlooked by the medical profession. A dysfunctional ileocecal valve can result in a combination of symptoms.

Ileocecal Valve Syndrome Symptoms

Right shoulder pain
Right side pelvic pain
Low back pain
Pain surrounding heart
Flu symptoms
Tinnitus
Nausea
Syncope / Near syncope
Headache
Bad breath
Face pallor
Dark circles under eyes
Dizziness
Bowel disturbances (diarrhea / constipation)

Causes of Ileocecal Valve Syndrome

Dehydration
Emotional upsets
How you eat (overeating, eating too frequently, eating too quickly, eating foods you are sensitive to, under-chewing your food)
Foods you eat (carbonated drinks, alcohol, caffeine, chocolate, raw foods, hot spicy foods)

Ileocecal Valve Syndrome Treatment Options

Chiropractic adjustments
Applied kinesiology
Homeopathy
Temporary elimination diet (for 2 to 3 weeks avoid:
Roughage foods--such as: popcorn, nuts, potato chips, pretzels, seeds, whole grains
Raw fruits and vegetables--such as: celery, bell peppers, cucumbers, cabbage, carrots, lettuce, tomatoes
Spicy foods--such as: chili powder, hot peppers, salsas, black and cayenne pepper, paprika, cloves, cinnamon
Stimulants--such as: liquors, alcoholic drinks, cocoa, chocolate, caffeine products

References: Systems DC Patient Education pamphlet: Open Ileocecal Syndrome, Consultation-- Dr. K.E. Kirchner, Kahoka, MO.