Permanent SIBO due to removal of ileocecal valve

My ileocecal valve was removed in 2019 as part of an emergency surgery.

In 2020 I got extremely ill, and multiple GIs thought it might be Crohn’s. I was put on a course of xifaxin given I definitely had sibo without the valve. I got better fast

Since then I have had to take a course every 4-7 months. My Mayo GI makes jump through hoops everytime to prove it isn’t another infection (labs, office visits, absolutely miserable stool tests) despite the symtoms being exactly the same everytime and it being her office that told me this would reoccur multiple times a year.

So there is hope, xifaxin for me (I know it doesn’t work for everyone) makes me feel better every time but the fact I am going to have to be turned inside out at least twice a year or more to get the medication we know works, is an absolutely terrible prospect, and if I ever lose my health insurance, I will be back in 2020, a shell of myself and unable to leave my house.

Thank you for your response.

I probably should have led with my surgery was due to a genetic abnormality called Meckle’s diverticulum (kind of like a second appendix) that at some point in early childhood had adhered to my right kidney, and my colon had been twisting/flipping back and forth for decades (I thought this severe pain was gas). At some point it didn’t flip back in one of the episodes and I went to the ER, was told my right colon was dilated and destroyed and my bowel was twisted but they didn’t know what. Had a right hemicolectomy and a Meckle’s diverticulumotmy, and the Meckles site collapsed so had another surgery 9 days later

A year after that I started getting really sick. I had some ulcers in my small bowel which started a Crohn’s investigation. GI at Mayo said SIBO couldn’t cause ulcers but I must certainly had it do the lack of valve and gave me around of Xifaxin. No more ulcers as of the pill camera test afterwards, and I have been fine (as fine as you can be with hold acid malabsorption) except for SIBO flare ups. The current GI in the same practice said ulcers were probably caused by the acidic diarrhea getting stuck at the right surgery sites (where all the ulcers were).

The investigation is never the same. Sometimes bacterial tests. Sometimes parasite tests.

It’s just frustrating because I pretty much will always have sibo and having to do miserable stool tests 2-3 times a year for the rest of my life is depressing. And terrifying because if I lose my health insurance I will get extremely ill because I can’t do a bunch of tests.

Because they don’t think I should get xifaxin without constant tests I don’t think I can get them to give a treatment plan without it (I have a treatment plan like that for my hyperadnergic pots and hypermobility).

And I am fine with yearly tests. With colonoscopies even. But not multiple tests and office visits (I don’t live around the corner) every single time I get the sibo they told me would never go away

Does Mayo do breath tests for SIBO? Probably a more tolerable option than stool tests.

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.

I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been a rough ride. I too had problems with chronic SIBO. My GI dr did a hydrogen breath test and it was sky high. He put me on several weeks on xifaxan,(rifaximin) and I did great. But, it always came back after a few weeks. Finally he put me on xifaxan 3x daily indefinitely. I had incredible insurance that paid 100% of the cost. Two years ago I was able to get the dosage down to twice a day and am still doing well although I still have a lot of irregularity flareups but I just live with that. Now, I am on Medicare. It is a tier 5 drug which is the most expensive. We got the best drug plan we could find in order to get this drug covered although it will still be expensive until we meet the catastrophic coverage amount. Xifaxan honestly has allowed me to have a better quality of life overall. I can't imagine what it would be like if I was forced to go off. I suffered with IBS since I was a child -- always had intestinal problems and now I know that I had a bowel deformity (rotated cecum) that wasn't detected until I obstructed, I'm pretty sure my dr prescribed it for IBS since it is approved for that. Without the IV there's just no way to keep bacteria out of the small intestine. I wish all of us who have had to have this surgery would get a special rate for this crazy insane cost medicine!

Thank you for your response.

I probably should have led with my surgery was due to a genetic abnormality called Meckle’s diverticulum (kind of like a second appendix) that at some point in early childhood had adhered to my right kidney, and my colon had been twisting/flipping back and forth for decades (I thought this severe pain was gas). At some point it didn’t flip back in one of the episodes and I went to the ER, was told my right colon was dilated and destroyed and my bowel was twisted but they didn’t know what. Had a right hemicolectomy and a Meckle’s diverticulumotmy, and the Meckles site collapsed so had another surgery 9 days later

A year after that I started getting really sick. I had some ulcers in my small bowel which started a Crohn’s investigation. GI at Mayo said SIBO couldn’t cause ulcers but I must certainly had it do the lack of valve and gave me around of Xifaxin. No more ulcers as of the pill camera test afterwards, and I have been fine (as fine as you can be with hold acid malabsorption) except for SIBO flare ups. The current GI in the same practice said ulcers were probably caused by the acidic diarrhea getting stuck at the right surgery sites (where all the ulcers were).

The investigation is never the same. Sometimes bacterial tests. Sometimes parasite tests.

It’s just frustrating because I pretty much will always have sibo and having to do miserable stool tests 2-3 times a year for the rest of my life is depressing. And terrifying because if I lose my health insurance I will get extremely ill because I can’t do a bunch of tests.

Because they don’t think I should get xifaxin without constant tests I don’t think I can get them to give a treatment plan without it (I have a treatment plan like that for my hyperadnergic pots and hypermobility).

And I am fine with yearly tests. With colonoscopies even. But not multiple tests and office visits (I don’t live around the corner) every single time I get the sibo they told me would never go away

I have been SUFFERING with SIBO and yeast in my gut ever since I had my ICV removed from my bowel resection in October 2022. I am currently trying to get a referral from my GI to meet with the Mayo Clinic team in Phoenix. I’ve heard of a nipple valve surgery where they intussuscept part of your small intestine into your large intestine and they create a valve that way. Has anyone looked into this? Has anyone had a surgery like this? I only feel somewhat normal when I take Diflucan and Xifaxan at the same time, but it’s not safe to take diflucan long term and my insurance company won’t approve Xifaxan long term. My symptoms return immediately upon stopping. I’ve tried all the diets. I’m feeling like surgery is my last resort. I’d love to do it if there is a team of doctors out there that can help. Any thoughts?

Hi everybody 🙂 I know this is an old thread, but I found it when searching for information related to SIBO and a missing ileocecal valve and wondered if anybody on here could help. Thanks in advance for reading 🙂

Like @tiss, I had a cecal volvulus when I was 24, back in 2012. I had an emergency right hemicolectomy removing about a foot of small and large bowel all together, including the ileocecal valve. They resected my large and small intestine - I'm not 100% sure where exactly - but somewhere around that whole right side area where the ileocecal valve would have been. Ever since my surgery, I've had persistent trouble with extreme bloating from eating that lasts for multiple days, nausea, loss of appetite, and just an overall ill feeling stemming from my gut. I've been working with a gastroenterologist and a GI dietitian for the last year, but unfortunately we haven't made any progress. At one point, they did an x-ray while I was extremely bloated to hopefully gain some clues, and saw that my stomach was totally full of air and very enlarged (they wrote in the notes that I had gastric distension). This led them to do an endoscopy to rule out a gastric outlet obstruction, which came back negative. They did a colonoscopy shortly after, and everything looked mostly normal except for a spot of irritation they found on one section of the colon. They tested to make sure it wasn't Crohn's, which it wasn't. We still don't know what that irritation was or if it's related to my symptoms. The worst symptom for me is the bloating/distension, and I haven't yet found anything that relieves it. Often times I'll just eat one meal in the morning, and get so full of air/pressure that I'm physically unable to eat for the rest of the day. Once it gets like that, anything else I eat just makes it expand more and more. Here are the things that I've tried so far, under the guidance of the dietitian and gastroenterologist:

-Xiaxifan (for SIBO)
-Cipro (for SIBO)
-Strict low FODMAP diet (I'm still currently following this just for good measure though it doesn't seem to solve the problem)
-Specific Carbohydrate diet
-Low residue diet
-Dicyclomine (gut anti-spasmodic)
-IBGard
-Alpha-galactosidase
-Meal spacing (4-5 hours apart)

I've also kept a detailed food diary of everything I eat and the symptoms, but there doesn't seem to be any real rhyme or reason to it. Like the original poster, I'm wondering if this is just chronic SIBO due to the fact that I no longer have an ileocecal valve and therefore nothing is stopping bacteria from populating my small intestine. It was encouraging to hear that Xiaxifan worked for @tiss, but I still haven't had any luck with it. I'm currently on it again and we are going to try it longer term to see if it eventually kicks in, but I haven't noticed any difference so far. I guess it could also be something that's not SIBO at all, which could be why antibiotics haven't worked, but so far neither me or the doctors have been able to figure it out.

Any ideas would be greatly greatly appreciated. Thank you so much 🙂 !