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pknw
@pknw

Posts: 3
Joined: Jul 16, 2017

permanent SIBO due to removal of ileocecal valve.

Posted by @pknw, Jul 16, 2017

Is there anyone who has no cure options for SIBO due to the removal of the ileocecal valve? If so, how do you minimize possible long term damage to your intestinal tract? Do you find that digestive enzymes, L-Glutamine, Enteragam or any natural supplements aid in a healthier immune system? if so,
please pass along your best advice. Thanks.

REPLY

Hello pknw, you might want to check out website siboinfo.com…there is all sorts of info on there.

@aithnie

Hello pknw, you might want to check out website siboinfo.com…there is all sorts of info on there.

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Thanks!

Hello @pknw,

Welcome to Connect. My sincere apologies for the delay in replying, but we’ve had a few technical changes on Mayo Clinic Connect, and somehow your message slipped past me.

I found a study that researches the link between the ileocecal valve and SIBO, which might interest you: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520169/

I’d also encourage you to read through some of the posts in this active discussion about SIBO on Connect; I’m confident you will find the members to be an incredibly informative group:
https://connect.mayoclinic.org/discussion/small-intestine-bacteria-overgrowth/

@betterb4 @bearylynn @robbinr have discussed taking L-Glutamine, and I’m sure they would have some insight for you.

@pknw, may I ask what symptoms you are experiencing? How are you managing the SIBO?

@pknw Knocked my socks off when you mentioned removal of your ileocecal valve! I didn’t think any traditional MDs even acknowledged the existence of the ileocecal valve. Who diagnosed a problem that required removal? And what was the problem diagnosed?
After two bouts with SIBO, the last gastroenterologist I saw said that the breath tests are not very accurate or reliable, and that often what shows as SIBO is really something else.

@steeldove

@pknw Knocked my socks off when you mentioned removal of your ileocecal valve! I didn’t think any traditional MDs even acknowledged the existence of the ileocecal valve. Who diagnosed a problem that required removal? And what was the problem diagnosed?
After two bouts with SIBO, the last gastroenterologist I saw said that the breath tests are not very accurate or reliable, and that often what shows as SIBO is really something else.

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I had an encapsulated appendicitis which involved my ileocecal valve, small amounts of both the large/small intestines~all had to be removed. SIBO has become a chronic permanent condition for me, as bacteria has no barrier to block transference from the large intestine to the small intestines and back.
Most SIBO information out there seems to address the need for antibiotics, diet and ways to regain a healthy digestive tract~my
questions are to get answers for how to deal with a ‘incurable’ SIBO, in hopes to live a long and healthy life as possible.
I think I need a doctor who specializes in SIBO and/or a nutritionist who deals with SIBO issues. Thanks for your interest.

Liked by tiss

Hi, I have the same problem as you. I just did a round off antibiotic, and am now trying to figure out what to do.

Is there a group blog anywhere on the internet?

is surgery available to replace ileocecal valve or to alter intestines to function as valve?

This is an old post but I found it from searching illeocecal valve and SIBO on google. On August 22nd, 2016 I had emergency surgery due to a bowel obstruction caused from a cecal volvulous. Had a right hemicolectomy with 18" of small intestine removed including the cecum, Illeocecal valve, appendix up to transverse colon which was resected into large intestine. Since then have had problems with SIBO since I have a wide open anastomoses in resected area. No way to keep bacteria from backing up into small intestine. Drs put me on align probiotics 2 months after my surgery which probably made situation w bacteria worse. Anyhow, found a great GI dr who ran some tests and diagnosed off the chart SIBO. Put me on Xifaxan daily and it's a life saver. Today he told me to go off the probiotics since you really don't want bacteria (even the 'good' bacteria in your small intestine. I have been on Xifaxan daily for 1 1/2 years and will be on it lifelong. It's improved the quality of my life 100 fold. Have pretty regular BM with occasional acid bile stools but not very often anymore. I do eat heaithy and stay away from things I can no longer digest like beans. Good luck to all.

@angie63

Hi, I have the same problem as you. I just did a round off antibiotic, and am now trying to figure out what to do.

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For me the diet has been key after antibiotics. No complex carbs that ferment and stay in the gut for the bad bacteria to feed on. I eat protein, fruits and vegetables. Because I lost so much weight, my nutritionist has me taking supplemental enteral shakes (enzymes)which my body absorbs very quickly before the bad bacteria can get a hold of it. It is a very slow healing process. I think diet is a key component of maintaining remission if we can call it that.

Liked by tiss

@guthealth

For me the diet has been key after antibiotics. No complex carbs that ferment and stay in the gut for the bad bacteria to feed on. I eat protein, fruits and vegetables. Because I lost so much weight, my nutritionist has me taking supplemental enteral shakes (enzymes)which my body absorbs very quickly before the bad bacteria can get a hold of it. It is a very slow healing process. I think diet is a key component of maintaining remission if we can call it that.

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Speaking of probiotics, the only ones I can tolerate are Florastor and Align. All the expensive potent ones immediately give me diarrhea.

luky2 girls reply:exsercises 30 minuts every day and strength your immunity system to be active.

@guthealth

For me the diet has been key after antibiotics. No complex carbs that ferment and stay in the gut for the bad bacteria to feed on. I eat protein, fruits and vegetables. Because I lost so much weight, my nutritionist has me taking supplemental enteral shakes (enzymes)which my body absorbs very quickly before the bad bacteria can get a hold of it. It is a very slow healing process. I think diet is a key component of maintaining remission if we can call it that.

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Can you give me the name of the supplement you drink? I am good to stay at 99 lbs since my surgery. Very hard to get all the protein I need because meats are so hard to digest.

@tiss

Can you give me the name of the supplement you drink? I am good to stay at 99 lbs since my surgery. Very hard to get all the protein I need because meats are so hard to digest.

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The supplement I drink is called EleCare. It is an elemental formula for children ages one and up. My nutritionist was a genius in thinking about using that for me (a 63 year old female)because they each contain about 300 calories, taste pleasant, and cause absolutely no gut reaction. Body absorbs enzymes in 20 minutes so you get all the nutrients. I could tolerate them when I had diarrhea and kept dropping weight. They are manufactured by Abbott. You can buy them through their website. Very expensive. Six cans of powder cost nearly $300.00. Your insurance may cover them. Mine does not. But I believe that type of supplementation has saved my hide. You just can’t eat everything you want or large portions with SIBO, so gaining weight has been an issue for me. I drink four a day between meals. Taste pleasant except for the unflavored one. Come in vanilla, chocolate and banana flavors. I add a little cinnamon and vanilla extract to mine. I could not tolerate Boost and those other protein drinks. I can drink these shakes even during the worst flair and get nourishment. Nutrients are broken down to enzymes and your gut absorbs them very quickly before bad bacteria can highjack them. Highly recommend them. Can also look through Amazon but beware of counterfeits.

The only thing I can address is the Enteragam. I use Entergam and have done so for over 5 years. The price has increased from 3 boxes for $100 to $100/box. It works amazingly for diarrhea at least for a couple of days and constipation afterwards is not a problem. May be some coupons on their website. It's considered a medical food so insurance will not cover it….at least that's what I'm told by my carrier.

Liked by tiss

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