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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@gboi

I wanted to give my story in the off-chance that it could be helpful to someone (or if someone has advice for me even!). Surprisingly, unlike most of you it seems, I had my ICV removed due to Crohn's Disease inflammation in the terminal ileum and cecum. Despite no apparent CD after that, I have had nonstop issues since the surgery (8 years ago). A new GI suggested I try a round of Rifaximin since my symptoms lined up with SIBO. For ~10 weeks I felt ON TOP OF THE WORLD, I could literally eat anything and had boundless energy. But then it came back. Rifaximin a second time … but this time the benefit was only ~6 weeks. A third time. Even shorter benefit. A forth course, no benefit anymore. Sad times.

As doctor "logic" goes, since Rifaximin wasn't helping anymore, it "couldn't be" SIBO anymore, so colonoscopy time. Lo and behold, they discovered that the connection between my ileum and cecum was done in such a way that I had about 8 inches of unused colon just flopping around (the two tubes were not joined to be "flush" way, rather they sealed the colon and put the connection nearly 8 inches away because surgeon reasons (the guy retired, nothing in their notes explained the decision, it will forever be a mystery. Lesson learned: if you're going to get a surgery done, ask you surgeon who THEY would have operate on them, and go to him or her).

After this "discovery", I consulted with all the big-wigs in the Crohns/GI world including Stanford, UChicago, and Cleveland Clinic, and they all seemed to think that this unused "blind loop" colon was probably harboring bacteria which would flow upstream into my small bowel, making it extremely difficult to eradicate SIBO since there was a constant replenishment of the starting culture. So off to yet another surgey … this was last year.

I forgot to mention that the SIBO diarrhea itself was not the worst part of this issue. What was absolutely DESTROYING my quality of life was that I was actually getting terrible insomnia due to GI "distress". Not pain, not really "bloating", not cramping (thankfully), just every single ****ing night at 3 to 5am my gut would kick into overdrive, and I would not be able to go back to bed until I past a (usually terrible) bowel movement, which usually took 2 hours. And of course the insomnia took over my life just at the start of the pandemic lockdowns so every doctor was telling me it was ALL PSYCHOLOGICAL, ALL IN MY HEAD, JUST LMAO FIND A WAY TO DE-STRESS MY DUDE. I think what may be happening is that my MMC is kicking into overdrive to try to clean the intestines (unlike some of you who seem to suffer from a lack of MMC), to an extent that I could not sleep through it. No doctor has provided a good explanation, alas.

After the surgery, I stopped having the worst of the "diarrhea" (actually more of a sludgey mess TMI sorry), but the insomnia and bloating was still there. So we tried Rifaximin … nothing. But then we cycled through a bunch of conventional antibiotics: cipro, doxycline, flagyl. Each time I achieved remission, but after 10-14 days, symptoms came right back. I told my doctor I was done cycling antibiotics so this time they gave me neomycin (500mg 2x day 30 days) (similar to magical rifaximin, neomycin is not taken up into the body so it is only active in the intestines. Unlike rifaximin, neomycin is pretty active in the colon which gives its own side-effects, and the small amount that is absorbed is very toxic to your kidneys and your hearing, so I cannot be on this my whole life, I believe). I have 5 days left in this present course, but I feel fantastic again. Complete remission. Killing each day. I have no clue what's going to happen once I come off, but at least this really does seem to suggest that the issue is SIBO and I need to figure out a way to keep the critters away.

Apologies for the diatribe. Some key points that hopefully are helpful to fellow suffers:
– If you haven't had a colonoscopy in a while, consider having one and tell them to really examine your anatomy and make sure the anastamosis is optimal and that there are no irregularities or issues. My MRIs (I've had several) always showed some kind of "thickening" near the anastamosis which they "assumed" was inflammation or scar tissue, but it actually turned out to be a length of colon just chilling. Yikes.
– If you respond to antibiotics, it is probably SIBO. If you stopped responding to Rifaximin (or never did), try getting on another one like neomycin or cipro (if appropriate for your situation, of course), and see if it moves the needle at all. If you do not feel better or at least "different" after blasting your microbiome, seems unlikely that it's SIBO (but maybe could be SIFO or some other critters, who knows).

Anyway, again hope this helps someone or at least starts giving them ideas. By no means have I "solved" my issues but I think I am making progress, and I hope that working together we can make progress for everyone. Peace.

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Oops I made a mistake and didn’t show that I was responding to your long post. So you will find it with just my name on it. Sorry!

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@julynn

I just read your second post which was quite something on the history of your situation! Much like you, Rifaximin did help temporarily twice but the third time it did nothing. The next antibiotic I took was a combo of Cipro and Flagyl (I believe). It worked for about a month. But now I’ve decided to go on natural antibiotics and Oil of Oregano does not irradicate the problem but seems to manage it somewhat. So I think I will use that off and on for now. So was thinking of combining that with the Cholestyramine after I finish the steroids. But I run everything by my GI Dr. first. Will continue to keep my posts coming on progress or failures. We truly learn from each other in this dire situation that we are in!

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Julynn- I have heard that the natural antibiotics and Oil of Oregano have worked for some people. I was never able to find the exact dosage of each or a naturopath that could oversee this for me. Please let me know what your dosages are. My new GI changed me from colestipol, which was prescribed by my internist, to colesevelam ( generic Welchol). He said they are similar " sister " drugs, but he preferred colesevelam. I would never consider the powder- I heard it was nasty and the pills are easy. the generic is not too expensive. Thank you gobi- I was not told at the onset that it needed to be taken with or after food- on an empty stomach I didn't get stomach pains, but a metallic taste in my mouth and reflux. So glad I found others with a similar issue. I know for sure I needed a bile acid sequestrant

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@sbr270

Julynn- I have heard that the natural antibiotics and Oil of Oregano have worked for some people. I was never able to find the exact dosage of each or a naturopath that could oversee this for me. Please let me know what your dosages are. My new GI changed me from colestipol, which was prescribed by my internist, to colesevelam ( generic Welchol). He said they are similar " sister " drugs, but he preferred colesevelam. I would never consider the powder- I heard it was nasty and the pills are easy. the generic is not too expensive. Thank you gobi- I was not told at the onset that it needed to be taken with or after food- on an empty stomach I didn't get stomach pains, but a metallic taste in my mouth and reflux. So glad I found others with a similar issue. I know for sure I needed a bile acid sequestrant

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Thanks for responding as always. Just called the Pharmacy and the only thing they have here is the Cholestyramine so I won't have a choice. So when my GI Dr prescribes it I will just have to do the best I can with it. I am basically doing the dosage that is on the bottle of the Oil of Oregano so will keep you posted. I do find though that even though I do have watery stools while on it (most of the time) I do not have the diarrhea frequency of 8 – 10 times a day like I do when I am not on it. So that is why I say it seems to stabilize me to some degree. I do have a (sort of naturopath) here but not one I put a great deal of confidence in so am doing this sort of on my own with guidance from my very good GI Dr and works with me on my wishes also. So he monitors me in all that I do and am greatly thankful for that! Where I live, there are not options to – (so called – find other doctors or Naturopaths). Till next time!

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Hi all. I had a right hemicolectomy 9 years ago for colon cancer. I understand now that this procedure generally removes the ileocecal valve, much of the ileum as well as the cecum. While I had more gas than normal I didn't have full sibo symptoms until 1+ years ago. A diligent primary care provider got my insurance to approve a round of treatment with Xifaxan. And it did absolutely nothing for me. In looking for answers online I happened to stumble across a GI Dr website that suggested Atrantil. I tried it and it worked. But then I dropped to the maintenance dose (or less) and it came back. I happened to be rx'd Cephalexin because of a mole removal and took the treatment dose of Atrantil along with it and this was far more effective than just Atrantil by itself. I had no gas for a couple weeks – none. But of course it came back. I've been able to mostly control it with Atrantil but this time it seems to not be working as well/quickly, and so I found this discussion while looking for ideas. For now I'm looking to combine antimicrobials (Berberine, oil of oregano) w/ Atrantil and possibly use Allicin (garlic extract) as an alternative to Atrantil to change things up. To prevent recurrence I see so much discussion on improving motility, but for those of us without the ileocecal valve, the missing valve is the issue, not motility. Perhaps digestive enzymes might help with prevention?

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@azdon

Hi all. I had a right hemicolectomy 9 years ago for colon cancer. I understand now that this procedure generally removes the ileocecal valve, much of the ileum as well as the cecum. While I had more gas than normal I didn't have full sibo symptoms until 1+ years ago. A diligent primary care provider got my insurance to approve a round of treatment with Xifaxan. And it did absolutely nothing for me. In looking for answers online I happened to stumble across a GI Dr website that suggested Atrantil. I tried it and it worked. But then I dropped to the maintenance dose (or less) and it came back. I happened to be rx'd Cephalexin because of a mole removal and took the treatment dose of Atrantil along with it and this was far more effective than just Atrantil by itself. I had no gas for a couple weeks – none. But of course it came back. I've been able to mostly control it with Atrantil but this time it seems to not be working as well/quickly, and so I found this discussion while looking for ideas. For now I'm looking to combine antimicrobials (Berberine, oil of oregano) w/ Atrantil and possibly use Allicin (garlic extract) as an alternative to Atrantil to change things up. To prevent recurrence I see so much discussion on improving motility, but for those of us without the ileocecal valve, the missing valve is the issue, not motility. Perhaps digestive enzymes might help with prevention?

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Hi Azdon,

So weird that you had no symptoms for 8 years and then they appeared. For the sake of curiosity, was there any specific "event" that you think caused them, or was it just a gradual onset?

Although it is not great that you have not achieved "permanent" remission, the fact that your situation does, in fact, respond to antibiotics and antimicrobials should offer you hope that you are barking up the right tree, as it were.

I was prescribed several rounds of conventional oral anti-biotics like flagyl and doxycline for 10 days. Each time I briefly achieved remission but the condition came back. I even tried to use atrantil to extend remission – as you yourself described! – but in the long run this was not successful. What finally worked for me was doing a 28 day regiment of neomycin. I have been symptom free for more than 4 weeks now, which is longest I have felt good in almost 3 years.

What was your dose of rifaximin – was it 3 pills of 550mg daily for 14 days? When you said it did nothing, do you mean you absolutely had no response?

If I were you, I would next try 28 days of neomycin (2x daily 500mg), or whatever your doctor felt comfortable prescribing for you. Neomycin can damage kidneys and hearing, so you got to watch out. But the formula seems simple, get rid of your current "infection" and maybe get 8 years of "normalcy". Fingers crossed good luck.

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@gboi

Hi Azdon,

So weird that you had no symptoms for 8 years and then they appeared. For the sake of curiosity, was there any specific "event" that you think caused them, or was it just a gradual onset?

Although it is not great that you have not achieved "permanent" remission, the fact that your situation does, in fact, respond to antibiotics and antimicrobials should offer you hope that you are barking up the right tree, as it were.

I was prescribed several rounds of conventional oral anti-biotics like flagyl and doxycline for 10 days. Each time I briefly achieved remission but the condition came back. I even tried to use atrantil to extend remission – as you yourself described! – but in the long run this was not successful. What finally worked for me was doing a 28 day regiment of neomycin. I have been symptom free for more than 4 weeks now, which is longest I have felt good in almost 3 years.

What was your dose of rifaximin – was it 3 pills of 550mg daily for 14 days? When you said it did nothing, do you mean you absolutely had no response?

If I were you, I would next try 28 days of neomycin (2x daily 500mg), or whatever your doctor felt comfortable prescribing for you. Neomycin can damage kidneys and hearing, so you got to watch out. But the formula seems simple, get rid of your current "infection" and maybe get 8 years of "normalcy". Fingers crossed good luck.

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I think it was partially gradual onset and partially suddenly worse. I had increasing gas over the years and sometimes had a reaction to certain foods where it would be significantly worse, but I always viewed those as one off. When it became bad on a daily basis I started tracking everything I ate. I found that it was always worse after taking probiotics. For a time they were in a protein drink that I took and then I had one with multiple bacteria that I would take occasionally, especially if I was having stomache issues, until I realized they were making things worse. I took generic Rifaximin 550 mg 2/day for 14 days, and I had absolutely no response, I noticed no difference at all.

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@azdon

I think it was partially gradual onset and partially suddenly worse. I had increasing gas over the years and sometimes had a reaction to certain foods where it would be significantly worse, but I always viewed those as one off. When it became bad on a daily basis I started tracking everything I ate. I found that it was always worse after taking probiotics. For a time they were in a protein drink that I took and then I had one with multiple bacteria that I would take occasionally, especially if I was having stomache issues, until I realized they were making things worse. I took generic Rifaximin 550 mg 2/day for 14 days, and I had absolutely no response, I noticed no difference at all.

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Yeah maybe your progression mirrors my experience in that I would have a "bad" reaction to a food and it was like "guess I cannot eat x anymore" until I basically ran out of foods I could eat.

Are you currently being seen by a GI for this? If you go to a GI or the Mayo clinic they will probably have you do a series of tests to rule out something more serious and then also provide evidence for a "SIBO" diagnosis … again since your symptoms respond to antibiotics and you're missing your ICV, SIBO seems to make sense. You can try going down the herbal route but sad to say, they do not seem to always work, but it's worth a shot since you don't have to get a doctor involved. Again, since you managed to have 8 years of "remission", it seems you may just have to hit your gut with the right antibiotic every so often to get back to normal. Rif and neomycin are popular since they are not absorbed systemically, but of course it has to be right for your "infection". What do you plan to do next?

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"What do you plan to do next?" Read up on Sibo while I try the antimicrobials. I may have to adjust my diet, which is sad because in general I am more likely to have symptoms when I eat healthy. I saw a highly rated GI Dr but he was of no help. I live near Phoenix but my latest search didn't turn up any Sibo specialists, not even at the local Mayo clinic, so will probably just work with my primary care Dr.

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@azdon

Hi all. I had a right hemicolectomy 9 years ago for colon cancer. I understand now that this procedure generally removes the ileocecal valve, much of the ileum as well as the cecum. While I had more gas than normal I didn't have full sibo symptoms until 1+ years ago. A diligent primary care provider got my insurance to approve a round of treatment with Xifaxan. And it did absolutely nothing for me. In looking for answers online I happened to stumble across a GI Dr website that suggested Atrantil. I tried it and it worked. But then I dropped to the maintenance dose (or less) and it came back. I happened to be rx'd Cephalexin because of a mole removal and took the treatment dose of Atrantil along with it and this was far more effective than just Atrantil by itself. I had no gas for a couple weeks – none. But of course it came back. I've been able to mostly control it with Atrantil but this time it seems to not be working as well/quickly, and so I found this discussion while looking for ideas. For now I'm looking to combine antimicrobials (Berberine, oil of oregano) w/ Atrantil and possibly use Allicin (garlic extract) as an alternative to Atrantil to change things up. To prevent recurrence I see so much discussion on improving motility, but for those of us without the ileocecal valve, the missing valve is the issue, not motility. Perhaps digestive enzymes might help with prevention?

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I can truly relate to what you are saying. I also had the gas symptoms first before I got the real SIBO symptoms but that was about 2 years after my right hemicolectomy. I also am in search for the ideal treatment. When I find it I will post it. I had written an earlier post on what I have done so far but have not found anything that truly maintains the situation yet. I am also in agreement with you on the motility issue. I don't think we have the same problem as others with SIBO do in that area.

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I put myself on a low fiber diet. Not healthy, white rice, white bread, hard extra sharp white cheese, canned peas, flour tortillas, white fish, chicken and occasional beef.
After my colonscopy last week, I was sent home with instructions for a high fiber diet. As soon as I ate a nectarine, my intestines started churning.
I am waiting for the biopsy results. Colonoscopy was visually clear, surgical anatomosis of colectomy was visualized. My GI did tissue biopsies to see if I have microscopic inflammatory bowel disease.
Well, I am going to go eat some fresh cherries and see what happens.
Yesterday, I had abdominal bloating, gas, urgency, muddy fecal leakage and diarrhea. Ugh. Last year I had 9 months of such bad diarrhea it ran down my legs when I least expected. I couldn't leave the house.
So I guess my currrent state is an improvement.
Have a great day.

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@rocknrobbn

I put myself on a low fiber diet. Not healthy, white rice, white bread, hard extra sharp white cheese, canned peas, flour tortillas, white fish, chicken and occasional beef.
After my colonscopy last week, I was sent home with instructions for a high fiber diet. As soon as I ate a nectarine, my intestines started churning.
I am waiting for the biopsy results. Colonoscopy was visually clear, surgical anatomosis of colectomy was visualized. My GI did tissue biopsies to see if I have microscopic inflammatory bowel disease.
Well, I am going to go eat some fresh cherries and see what happens.
Yesterday, I had abdominal bloating, gas, urgency, muddy fecal leakage and diarrhea. Ugh. Last year I had 9 months of such bad diarrhea it ran down my legs when I least expected. I couldn't leave the house.
So I guess my currrent state is an improvement.
Have a great day.

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Please let us know what the biopsy results are (If you wish to share of course!)

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@julynn

Please let us know what the biopsy results are (If you wish to share of course!)

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Definately. It has been years without an answer, that I don't expect an abnormal finding. I am pretty resolute to the fact I am stuck with this for life:(
I am tossing it up to my hemicolectomy with removal of the ileocecal valve.

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