Permanent SIBO due to removal of ileocecal valve

Posted by pknw @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.

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@tiss

I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been a rough ride. I too had problems with chronic SIBO. My GI dr did a hydrogen breath test and it was sky high. He put me on several weeks on xifaxan,(rifaximin) and I did great. But, it always came back after a few weeks. Finally he put me on xifaxan 3x daily indefinitely. I had incredible insurance that paid 100% of the cost. Two years ago I was able to get the dosage down to twice a day and am still doing well although I still have a lot of irregularity flareups but I just live with that. Now, I am on Medicare. It is a tier 5 drug which is the most expensive. We got the best drug plan we could find in order to get this drug covered although it will still be expensive until we meet the catastrophic coverage amount. Xifaxan honestly has allowed me to have a better quality of life overall. I can't imagine what it would be like if I was forced to go off. I suffered with IBS since I was a child — always had intestinal problems and now I know that I had a bowel deformity (rotated cecum) that wasn't detected until I obstructed, I'm pretty sure my dr prescribed it for IBS since it is approved for that. Without the IV there's just no way to keep bacteria out of the small intestine. I wish all of us who have had to have this surgery would get a special rate for this crazy insane cost medicine!

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I suffered the same history as you. Lifelong bowel problems that plagued me until a volvulus caused me to have a right hemicolectomy with removal of the ileocecal valve in 2015. My quality of life deteriorated and I became more and more ill. Chronic diarrhea, abdominal pain, bone pain, muscle weakness and ternderness, and brain fog. In the last 6 months I have had so much blood work with nothing showing up positive. Finally my PCP referred me to a gastroenterologist that read my surgery history and labs and colitis on CT and said you have bacterial overgrowth due to your hemicolectomy with ileocecal valve removal. I have been on 3 different antibiotics. When I am on them I get better but when the course of antibiotic is finished the diarrhea returns.
I just met my gastroenterologist last week. I see him in 4 weeks to determine what course to take from there. He said patients with SIBO usually remain on treatment the rest of their lives.

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@rocknrobbn

I suffered the same history as you. Lifelong bowel problems that plagued me until a volvulus caused me to have a right hemicolectomy with removal of the ileocecal valve in 2015. My quality of life deteriorated and I became more and more ill. Chronic diarrhea, abdominal pain, bone pain, muscle weakness and ternderness, and brain fog. In the last 6 months I have had so much blood work with nothing showing up positive. Finally my PCP referred me to a gastroenterologist that read my surgery history and labs and colitis on CT and said you have bacterial overgrowth due to your hemicolectomy with ileocecal valve removal. I have been on 3 different antibiotics. When I am on them I get better but when the course of antibiotic is finished the diarrhea returns.
I just met my gastroenterologist last week. I see him in 4 weeks to determine what course to take from there. He said patients with SIBO usually remain on treatment the rest of their lives.

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Do you get monthly b12 injections?

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I hope all of of here who have had an ileectomy and cecum removal are getting monthly (or more often) b12 Injections. Our bodies are no longer able to absorb b12 because the only place it can be absorbed is through the cecum. B12 deficiency can major problems.

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@tiss

Do you get monthly b12 injections?

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I take super B Complex, B levels consistently low

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@rocknrobbn

I take super B Complex, B levels consistently low

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It is medically necessary for b12 injections for those of us with no cecum or ileum. It's shocking how many doctors don't understand how dire and necessary these injections are, you can take as high of mg you want of b12 orally but your body has no way to absorb it. Please talk to your dr about this!

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@tiss

It is medically necessary for b12 injections for those of us with no cecum or ileum. It's shocking how many doctors don't understand how dire and necessary these injections are, you can take as high of mg you want of b12 orally but your body has no way to absorb it. Please talk to your dr about this!

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Thank you. When I see him March 2nd this will be on my list of questions.

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@rocknrobbn

I suffered the same history as you. Lifelong bowel problems that plagued me until a volvulus caused me to have a right hemicolectomy with removal of the ileocecal valve in 2015. My quality of life deteriorated and I became more and more ill. Chronic diarrhea, abdominal pain, bone pain, muscle weakness and ternderness, and brain fog. In the last 6 months I have had so much blood work with nothing showing up positive. Finally my PCP referred me to a gastroenterologist that read my surgery history and labs and colitis on CT and said you have bacterial overgrowth due to your hemicolectomy with ileocecal valve removal. I have been on 3 different antibiotics. When I am on them I get better but when the course of antibiotic is finished the diarrhea returns.
I just met my gastroenterologist last week. I see him in 4 weeks to determine what course to take from there. He said patients with SIBO usually remain on treatment the rest of their lives.

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It's good to hear of another GI dr, besides my own, that understands that chronic SIBO is a real thing for those of us with no ileocecal valve.

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@tiss

Do you get monthly b12 injections?

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I had multiple intestinal surgeries for adhesions due to complications from Gastro bypass. I tack injections b12 weekly , vit d 50,000 and iron infusion annually (fereheme) my illiocecal valve , appendix and gallbladder all removed. The illiocecal valve and surrounding small and large intestine that absorbs those vitamins have been removed

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@nova1976

I had multiple intestinal surgeries for adhesions due to complications from Gastro bypass. I tack injections b12 weekly , vit d 50,000 and iron infusion annually (fereheme) my illiocecal valve , appendix and gallbladder all removed. The illiocecal valve and surrounding small and large intestine that absorbs those vitamins have been removed

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SIBO is side effect

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@tiss

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.

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Thank you so much for sharing your history. I also had the same surgery for the same reason in 2015. My doctors never believed the significance of how it changed my life. And continued to get worse. Diarrhea, occuring unannounced, in my pants, when i was out. I stopped going out, became weak, with chronic fatigue, muscle tenderness, weakness, brain fog and rashes on my finger. Finally, I have a gastroenterologist who believes in SIBO. I have finished my third course of antibiotics. Diarrhea returns about 2 1'2 weeks after I complete them. I will ask about Xifaxan when I see him next week. I have regained some weight finally, and I am going for long walks. It is sad though. That symptoms return.

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@rocknrobbn

Thank you so much for sharing your history. I also had the same surgery for the same reason in 2015. My doctors never believed the significance of how it changed my life. And continued to get worse. Diarrhea, occuring unannounced, in my pants, when i was out. I stopped going out, became weak, with chronic fatigue, muscle tenderness, weakness, brain fog and rashes on my finger. Finally, I have a gastroenterologist who believes in SIBO. I have finished my third course of antibiotics. Diarrhea returns about 2 1'2 weeks after I complete them. I will ask about Xifaxan when I see him next week. I have regained some weight finally, and I am going for long walks. It is sad though. That symptoms return.

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It really is hard to deal with during flareups. I'm sorry you are having problems. Enlist your Drs help to maybe get patient assistance to help pay for this crazy expensive drug.

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@rocknrobbn

Thank you so much for sharing your history. I also had the same surgery for the same reason in 2015. My doctors never believed the significance of how it changed my life. And continued to get worse. Diarrhea, occuring unannounced, in my pants, when i was out. I stopped going out, became weak, with chronic fatigue, muscle tenderness, weakness, brain fog and rashes on my finger. Finally, I have a gastroenterologist who believes in SIBO. I have finished my third course of antibiotics. Diarrhea returns about 2 1'2 weeks after I complete them. I will ask about Xifaxan when I see him next week. I have regained some weight finally, and I am going for long walks. It is sad though. That symptoms return.

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My surgery was 50 years ago! I have had b12 shots monthly forever and take extra vitamin d and potassium. All necessary. A few months ago the diarrhea became so bad the I too felt I was destined to become homebound, due to the urgency and accidents. A new gastro suggested I take Welchol, a medicine for cholesterol that has the side effect of constipation. I started slowly- 2 pills per day, now at 4. My diarrhea is back to my "normal" and manageable. No urgency. It is a miracle. Not a well known cure- most gastros don't even know to try this. Read about it and suggest it to your doctor. It is an off label use for Welchol. It saved my life!

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