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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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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@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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In reply to @rocknrobbn "xifaxan?" + (show)
@rocknrobbn

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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@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

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

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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@rocknrobbn

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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What kind of surgery did you have?

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Right hemicolectomy with removal of the ileocecal valve. SIBO temporarily arrested with 3 separate rounds of antibiotics since mid December. Now returned to IBS-Constipation. My bowels are silent. Taking Colace every other day. No BM since Tuesday, today is Saturday. Ugh.

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I envy the folks here who are able to afford Xifaxan. It works very well for me, but I had to stop taking it because of the outrageous cost. $800 per month for me after insurance. And I don't qualify for help because I am on Medicare. Here is the part that really rankles me. My GI doc has a colleague who works in a European country with state subsidized healthcare. Cost per tablet ? One dollar…….

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@jcarndt

I envy the folks here who are able to afford Xifaxan. It works very well for me, but I had to stop taking it because of the outrageous cost. $800 per month for me after insurance. And I don't qualify for help because I am on Medicare. Here is the part that really rankles me. My GI doc has a colleague who works in a European country with state subsidized healthcare. Cost per tablet ? One dollar…….

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I hear ya Keith! I am on medicare too and my drug plan covers it but at a tier 5 level. Outrageously expensive. Those of us who need this drug can’t be in the millions and i guess the company assumes if we need it that bad we will cough up the money— whixh of course is our savings.

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I've had the right side of my colan removed. I've had constant pain at the connection sites. More after I've eaten. It has been six months. I've been back to the sergon who did a colanosphy and a cat scan and says all looks good. Anyone else have this. I did not have any pain before surgery, I had a large amount of polops . Vicki

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@rocknrobbn

Right hemicolectomy with removal of the ileocecal valve. SIBO temporarily arrested with 3 separate rounds of antibiotics since mid December. Now returned to IBS-Constipation. My bowels are silent. Taking Colace every other day. No BM since Tuesday, today is Saturday. Ugh.

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Have you tried OTC Prunelax?

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