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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@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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Hey guys.. Finaly found a page with lots of people who have the same issue. ive felt so lonely last years. nobody understands what its like to wake up after surgery and have to adapt to a completely different digestion. surgery was delayed waay to long. eventually had to take out 40 cm of the illeum and 10 of cecum +ICV. Ive been struggeling with anemia and auto-immune issues every since the surgery. does anyone has any suggestions on the anemia? my energy is soooo low… hb is around 4. Wish you all the best.

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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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man, respect for you being still here and trying so hard. Its must been a nightmare to find out they did your surgery like that. Im also struggeling with isomnia.. never tried rixamin or any antibiotic. anti microbials havent worked for me either… is there anyway we can get in contact? i would love to discuss some thing with you.

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@rocknrobbn

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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I also had a Colonoscopy, Endoscopy and a Barium Meal last year after all the SIBO symptoms started showing up and of course they did not show up anything of substance to tie it to my symptoms. So that is why my GI Dr concluded that it must be SIBO and treats it as such. When the antibiotic treatments I take from time to time work for a short a time, he is assured that it truly is SIBO. I am trying the natural route but I have yet to find one that truly works. So I just continue on! As you say "I am stuck with this for life"! So we keep reading, testing and trying!!!

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@julynn

I also had a Colonoscopy, Endoscopy and a Barium Meal last year after all the SIBO symptoms started showing up and of course they did not show up anything of substance to tie it to my symptoms. So that is why my GI Dr concluded that it must be SIBO and treats it as such. When the antibiotic treatments I take from time to time work for a short a time, he is assured that it truly is SIBO. I am trying the natural route but I have yet to find one that truly works. So I just continue on! As you say "I am stuck with this for life"! So we keep reading, testing and trying!!!

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Hope the natural route works for you! what are you trying? anti microbials? low fodmap diet? motility agents? meal spacing? let me know what works for you! do you have any other symptoms beside bloating or lose stools? any solutions for malapsorption? i need to fix my anemia! I like your positifity!!

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@sybrand

Hope the natural route works for you! what are you trying? anti microbials? low fodmap diet? motility agents? meal spacing? let me know what works for you! do you have any other symptoms beside bloating or lose stools? any solutions for malapsorption? i need to fix my anemia! I like your positifity!!

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My GI Dr put me on antibiotics with Prednisone because of the inflammation in my intestines. This treatment works temporarily but as mentioned before, my symptoms always recur. I basically follow a low fodmap diet. My motility does not seem to be an issue (I don't think). I do meal spacing – eating three times a day without any snacks in between. As far as malabsorption, this is a problem at times, when my stools are very loose which happens often. As far as bloating goes, yes every evening after my last meal of the day I have bloating and gas. The natural methods I'm using right now are Berberine Complex, Oil of Oregano, Neem Plus and Peppermint Oil Capsules also Blueberry Extract Capsules. The Oil of Oregano and Neem Plus I do for a 4 weeks period and then stop for a week or so. I find these things help to some degree but do not solve it completely. So will transition into trying something else soon. Instead of the Oil of Oregano and Neem Plus, I will switch to Black Cumin Seed Oil and see what that does. And the Peppermint Oil Capsules, I am going to switch to Activated Charcoal and see how these will work. Will keep you posted.

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@sybrand

man, respect for you being still here and trying so hard. Its must been a nightmare to find out they did your surgery like that. Im also struggeling with isomnia.. never tried rixamin or any antibiotic. anti microbials havent worked for me either… is there anyway we can get in contact? i would love to discuss some thing with you.

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I have a throwaway Skype I can give you (does Mayo support DMs?). I can probably spare some time this weekend, would love to hear your story.

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@tiss

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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The specific RX for SIBO is v.expensive and when I brought the cost to the attention of my NP, she found another antibiotic that she prescribed instead. I used it for, I think 10 days or so, during which time and the following 2 weeks, I felt good. After that time, symptoms came back and I asked for a refill. She would not refill it, not a long term solution?, and then she left the practice so I’m just now rediscovering my SIBO diagnosis and trying some naturopathic solutions. Not clear of symptoms yet.

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@sybrand

Hope the natural route works for you! what are you trying? anti microbials? low fodmap diet? motility agents? meal spacing? let me know what works for you! do you have any other symptoms beside bloating or lose stools? any solutions for malapsorption? i need to fix my anemia! I like your positifity!!

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I have same problem Only cure is once a year infusion of Fereheme (Iron without the side effects)
It’s expensive but covered by my insurance
Besides the ileocecal valve, the portion of bowel that absorbs iron and b3 also removed. As a result I need weekly vitamin b3 injections

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