Permanent Sibo due to ileocecal valve removal

I have had Sibo several times. Last time, I took Biotics Research supplements. There are two different supplements. FC Cidal and Dysbiocide. I took these for I think six weeks and got better. Also, there are other supplements called Metagenics. These are herbs that can help. You can find these on Amazon. Sugar and starch is bad for Sibo. I get sibo when I take H2Blockers like Tagemet. I read somewhere when someone takes med to get rid of gas, it can cause Sibo.

I was diagnosed with SIBO. Prior to being tested, I had 3 endoscopies and each time prescribed a med - large doses of Pepcid and xifaxin and a PPI. Like you, once off symptoms returned. With the 3rd endoscopy, the GI told me to never take a PPI again as my cells were hypertrophic. I was at a loss of what to do. On my own I went sugar free, dairy free and gluten free and after 2 weeks started feeling better. I was encouraged. Having followed a young man who had had a 10 year journey trying to find out what was wrong, I learned he turned to functional medicine. He was so amazed with the results that he become a functional medicine doctor. So I sought one out.
Functional medicine looks for the cause of your symptoms before treating you. Prior doctors I went to were treating the symptoms. Thus, symptoms returned once treatment ended.
My functional medicine doctor tested me thoroughly for SIBO, SIFO, yeast infection, parasites and mold exposure. Treatment was based on the causes. Changes to my diet were also necessary to heal and build up the lining of the intestinal tract to rid me of the causes.
You can find functional medicine doctors by city and state at ifm.org. Look for one who specializes in GI issues. It took me 3 tries before I found one I was confident with. She is also an MD, some are not. Ask lots of questions and check reviews.
Best to you. It’s a frustrating journey. But it was the best thing I have done to rid myself of GERD, SIBO, yeast infection and mold exposure.

You need to heal your gut by eating the right foods and supplements. I have found beef gelatin before a meal to be healing, I make lemon jello and use liquid monk fruit as a sweetener. You probably have leaky gut brought on by the shock of the surgery and may develop food sensitivities. Hope this helps!

check out the following websites, both doctors are well respected and have treated tons of patients with great results:
Dr Alison Siebecker: https://www.siboinfo.com/diet.html
https://www.siboinfo.com/overview1.html
Info sheet on irritating additives:
https://www.siboinfo.com/uploads/5/4/8/4/5484269/sibo_supplement_checklist.pdf
Dr Jacobi
https://www.thesibodoctor.com/

Hey there - sorry about the issues you are facing.
I also have had my ICV removed due to strictures from Crohn's Disease, and suffered and continue to suffer from SIBO, but I am making progress.

There are a lot of good ideas posted already but most of these are specific to people with a normal intestinal structure (not modified through surgery), who develop SIBO for other reasons. Even though the final disease is still SIBO, the root cause is different so treatment has to be different.

First, you should strongly consider getting a colonoscopy done so that a doctor can evaluate how your surgery healed and how well your surgeon did in making the connection flush. Basically, I suffered for years because my resection was not flush and there was a 10cm dead-end pocket where food would accumulate and be fermented by bacteria, leading to SIBO which effectively destroyed my quality of life. Solution was, unfortunately, to get another surgery to make the connection flush. And more unfortunately, I was not "cured" immediately after the surgery, it took a round of oral neomycin for 4 weeks to finally kill off the bacteria (I had been cycling rifaximin for years at this point and it is reasonable to assume that the bacteria in my gut were resistant to it. We also tried conventional antibiotics like doxycycline and flagyl - only gave me about 2 weeks of remission each time, those gut bacteria are very resilient).

Basically, you should strongly consider getting a colonoscopy done to see if your anatomy gives you a fighting chance to get rid of the bacteria, if not, unfortunately another surgery may be on the table.

If your intestines look good, you unfortunately need to consider bringing out the big guns to get rid of the bacteria in your gut, especially if you lost response to rifaximin.

Next, and this is the boat I am currently in, is that you need to come up with a maintenance strategy. I continue to have intestinal issues although not nearly as severe as even a year ago. Probably a combination of minor Crohns and minor SIBO. Probably need to figure out a combination of rifaximin or any of the myriad herbals/botanicals to keep the small intestinal bacteria population in check.

Hope this helps - happy to brainstorm with you if you want to talk to someone who has been in your shoes.

Thank you for your comments and insight. The surgery that I had in 2021 was done by a different Doctor that I am seeing now i was unhappy after the surgery about the quality of care i was getting so i went about to find a new doctor and it wasn't until I saw this new gi Doctor and he performed a colonoscopy in August of 2022 that this Doctor told me for the first time to my knowledge that my surgery was done unusually done and that I didn't have a ileocecal valve anymore I was stunned to find out this information I was never told prior to this that the valve was removed. But I am not sure about the connection being flush I have a appointment in two weeks I will definitely ask him about that. When I saw my gi in April he did mention that surgery was another option but we didn't dive deeper into it at the time but it's looking like it might be my only option. I am tired of just not being able to eat even a slice of gluten free bread I basically drink all of my meals except for the cream of rice and lactose free milk and soy milk. This has bin going on for almost two years now like you say it's about the quality of life and right now it's terrible so I hope I can get to some solution even if it means having another surgery.

Thanks for the response, and good on you for fighting for a better doctor and better treatment.

I would be very interested to hear what your doctor has to say about your colonoscopy done 10-11 months ago. My anastamosis (reconnection) was done "side-to-side", which is a relatively old-fashioned way of doing it. There are certainly pro's and cons to doing it one way or the other, but in my case the con was that the excess intestine again left a big flap - not saying it's the case for you, but something to keep in mind.

Another thing to keep in mind is that it took THREE colonoscopies post surgery for a doctor to stop and say "hey this is kind of weird, you don't usually see this and I do 10+ colonoscopies of Crohn-ies a week". They typically go in, see zero inflammation, and call it a day - only because I was having recurrent issues did my doctor stop and snoop around, so to speak.

Again, I would urge you to find out exactly what was "atypical" about your anastamosis, and whether it may lead to these issues. And if your doctor starts talking about surgery, I would shop around and get second and third opinions and find a surgeon you're most comfortable with, even if he or she does not work directly with your doctor. (In retrospect, I was probably pressured to go with the surgeon my doctor wanted even though I had vague misgivings, but I was 23 years old and no one in my family had ever been sick like this, so I did not know any better. )

As far as quality of life goes, have you considered going a more meat based diet? I have no ideological disposition towards any diet being "healthier", but "scientifically" limiting complex carbs seems to help the best with SIBO.

Unfortunately, gluten-free bread doesn't cut it because it's still loaded with complex carbs that the bacteria like to munch on. For me, I make 2-3 lbs of ground beef (a mixture of 85 and 90%) with just enough plain tomato sauce to taste (add more salt than you think you need, it's not gonna kill you), and divide it into 4 - 7 meals depending. I add just enough white pasta to get the texture acceptable - certainly possible to eat the beef on its own and many people do, but it becomes a small chore after a while.

It's not perfect but it certainly is loads better than the terrible issues I get with rice or potatoes. For some reason, when you cool down rice and potatoes, the starches recrystallize and become more "resilient". This is good if you're trying to lose weight (there is a dietician out there who puts his patients on a reheated-potato-only diet to good success), but terrible if you're trying not to starve bacteria. White pasta does not crystallize the same, I have found.

Give it a shot, or happy to further brainstorm with you. Good luck and keep me updated if you want.

Best,
G

I’m sorry you’re struggling with this. I get the frustration! I had my ICV removed due to bowel obstructions, and ever since that surgery (Sept 2022) I have had nonstop issues. I finally switched to a GI who prescribed me Xifaxan, but after the two week regiment, my symptoms were back immediately. When I went back and explained this to him, he said that I can take Xifaxan indefinitely if needed. He has one other patient that does this, and he said it is one of the safest ones to take long term (minimal side effects, it’s localized just to gut bacteria, and the body tends to not build a resistance to it). That being said, candida overgrowth, or small intestinal fungal overgrowth, is also something my endocrinologist found (separate from my GI). I was just barely prescribed an antifungal for it (fluconazol). Candida overgrowth can have similar symptoms to SIBO so it may be worth exploring too. However, I’ve been on Xifaxan for a month straight now, and I have no plans of stopping anytime soon. Consistently taking that medication has given me some quality of life back. I’m only 4 days into the fluconazol for candida treatment, but I’ve noticed less of a negative reaction when I eat something higher in carbs.