1. < Digestive Health

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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nova1976 | @nova1976 | Feb 5, 2022
In reply to @nova1976 "I had multiple intestinal surgeries for adhesions due to complications from Gastro bypass. I tack injections..." + (show)
@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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rocknrobbn | @rocknrobbn | Feb 26, 2022
In reply to @tiss "This is an old post but I found it from searching illeocecal valve and SIBO on..." + (show)
@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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2 replies
tiss | @tiss | Feb 26, 2022
In reply to @rocknrobbn "Thank you so much for sharing your history. I also had the same surgery for the..." + (show)
@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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1 reply
sbr270 | @sbr270 | Feb 27, 2022
In reply to @rocknrobbn "Thank you so much for sharing your history. I also had the same surgery for the..." + (show)
@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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1 reply
rocknrobbn | @rocknrobbn | Feb 27, 2022

I see my gastro on March 2nd. Your reply is timely. I have written down the guidance you provided and I will tell him about it. Thank you so much. I want to be able to make plans with friends and not have to cancel. Ugh.

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rocknrobbn | @rocknrobbn | Feb 27, 2022
In reply to @tiss "It really is hard to deal with during flareups. I'm sorry you are having problems. Enlist..." + (show)
@tiss

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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xifaxan?

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1 reply
tiss | @tiss | Feb 27, 2022
In reply to @rocknrobbn "xifaxan?" + (show)
@rocknrobbn

xifaxan?

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Xifaxan, or rimifaxan is what I take for chronic SIBO. It's very very expensive. Have your doctor do a hydrogen breath test to check for SIBO.

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1 reply
KRF | @keetar | Feb 28, 2022
In reply to @sbr270 "My surgery was 50 years ago! I have had b12 shots monthly forever and take extra..." + (show)
@sbr270

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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Thanks for the information very helpful I would also add that recently I have found adding a pro kinetic like motegrity has helped me a lot. according to Dr. Pimentel it can give you several more months of relief post anabiotic’s as well bismuth the active ingredient in Pepto-Bismol has helped me. I do believe I have hydrogen sulfur Sibo so that’s something to look into if you haven’t determined your exact type of SIBO

All the best

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tiss | @tiss | Feb 28, 2022
In reply to @tiss "It's good to hear of another GI dr, besides my own, that understands that chronic SIBO..." + (show)
@tiss

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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We seem to be the lucky ones. I don't understand how any good dr can refute the possibility of SIBO with our histories,

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rocknrobbn | @rocknrobbn | Mar 11, 2022
In reply to @rocknrobbn "I found him through the referral my Family Nurse Practitioner put in when she couldn't figure..." + (show)
@rocknrobbn

I found him through the referral my Family Nurse Practitioner put in when she couldn't figure out what was wrong with me. I had so many blood and stool tests with no finding to explain my chronic diarrhea and feeling unwell everyday.
I am in an HMO and on medicare advantage plan. I cannot self direct my care. Just by luck I had my consult with a gastroenterologist who understands SIBO/ SIFO in post hemicolectomy surgery with removal of the ileocecal valve.
My doctor also said it will be life long. I have had this for several years so I believe him.
I was on Cipro and Metronidazole and now on Augmentin.

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I finished my third round of antibiotics and had my follow up with the gastroenterologist a week ago. Prior to my surgery I had chronic constipation and learned after my surgery my colon twisted becasue it wasn't anchored. From the time I was a small child I suffered from horrible constipation probaably due to intermittent twisting. Anyway, my GI now has me on IBgard 2x per day, Align 1 x per day and Colace everyother day. I still don't know when bowel movements will become normal. It has only been 1 week on this regimen and I have had 1 bowel movement. But no pain or diarrhea.
I will keep you posted. We will see how long this lasts. He said recurrent intermittent antibiotic treatment will be necessary. Thoughts?

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