Has anyone been diagnosed with sibo even when your UC is in remission with Entyvio?
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I was just diagnosed with SIBO after years of IBS attempted treatment. Sucrose was recommended as the only medication (because it is and there’s only one manufacturer) but I’ve been controlling it with diet and am doing well. Sucrade is pricey.
Any suggestions on how else to deal with this are very much appreciated!
Certainly possible, people without IBDs are diagnosed all the time. Have you had any surgeries that may make you more susceptible, or have you been having GI issues even with your IBD in remission and have been trying to get to the root of it?
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Have you formally been diagnosed with Congenital Sucrase-Isomaltase Deficiency that you need Sucrade? Seems like there is a lot more to your story.
Yes, I have been so diagnosed with Sucrade the purported answer to my condition. So far, given the amount of time it’s taken to even get Sucrade (still waiting after a month), I’ve adjusted my diet and have been doing reasonably well.
I’d love to hear from others who have this CSID condition and learn how to cope. My feeling is that it’s one more darned thing to tend to. Sigh.
XiFaxin is the #one treatment for SIBO but very pricey. Dr. said if I test positive, periods of antibiotics is best. That means lots of diarrhea! Probiotics make me sicker. Unfortunately, SIBO comes back every several months or so. Never heard of Sucrade.
Trying to get to the root of it. No surgeries. Having flares for 2 years. I've never heard of IBS being that bad. My new GI is the first to mention SIBO and I've been on Entyvio since 2019. Can't eat any fiber in my diet. Even eggs go right thru. No quality of life, Lots of stress though with OCD and still trying to find social support. So alone with all this. thankful for this group.
Yeah it seems very common to have an IBD in "clinical remission", no inflammation by scopes and bloodwork, but still not be able to tolerate a lot of foods. Sounds like your doctor would like to test you (breath tests?) for SIBO and then administer antibiotics. Xifaxin is actually pretty mild for most people so don't work yourself up over it if you have to take it. Issue is if SIBO keeps coming back, it would be good to figure out what caused you to have SIBO in the first place, especially if you don't have surgery complications.
Does anyone really know what causes SIBO in patients with UC? If there are reasons, I'd like to know which ones. Doc just said sometimes bad bacteria like to colonize in the small intestine and it will come back periodically. Can't take XiFaxin due to side effects with my other meds. No black and white in medicine I guess. I'd love more ideas if you have any to offer. Thanks so much!
Xifaxan was really tough on me – nausea, stomach cramps, headache and the mother of all yeast infections. And it did no good once I recovered from the side effects.
Sucrade is this pricey liquid made by only one company that costs too much. I’m just altering my diet with a backup of a natural pill that was suggested by a SIBO fellow sufferer online.
I’m trying to handle this adventure naturally until I can’t.
Yes, I tested positive for CSID. I knew within 20 minutes of taking the test, that I would be positive due to my reaction. After years of gut problems with almost anything I ate, I have some clear answers. This is not an easy diagnosis as it requires continual monitoring of what you put into your body. I’ve been taking Sucraid with my meals for almost 2 years. There is a program that allows me to pay only $5 for a month’s supply. There is a CSID Cares website for dietary suggestions. I also have lactose intolerance to contend with.
Anyone else have CSID and lactose intolerance?
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