Permanent SIBO due to removal of ileocecal valve

I am glad a group like this is here. I have no ileocecal valve after twisted colon surgery.3 years ago My surgeon denied it caused SIBO but my GI doctor ( in same hospital group) confirmed it did and said surgeon was "old school" and wrong. Could he have saved the valve? I will never know but surgeons need to be more educated in this area if they are going to continue to perform these procedures. My SIBO is hydrogen sulfide sibo which now, in addition to the intestinal issues, it appears to be creating even more systemic issues ( neuropathy fatigue rashes etcThe xifaxan stopped working and am getting ready to start a new treatment called Alinia, which insurance does not cover, but I dont care about that now. Would love to hear from others esp those who have Hydrogen Sulfide SIBO Thinking about elemental diet; hate to give up food again but getting desearate. Wishing Mayo Clinic did ileocecal valve replacements. Maybe one day.

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.

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