No idea

[Tina M]

I have had 6 bowel movements today and my butt is on fire. 6 in the 3 hours I’ve been up! I started this in March of 2023 and still don’t have a definitive diagnosis! First doctor did all the stuff needed ( stool samples, blood, colonoscopy, radiology, so many meds) and first said lymphatic colitis. 4 months later while it got worse she did an endoscopy and flex sig and changed it to ulcerative colitis. But she also said you are not hitting anything out of the ballpark diagnosis wise! Fed up I went to a Crohn’s and Colitis center and a new GI. Another colonoscopy and he said possibly Crohn’s. He did an MRE which showed nothing and stool samples that showed my once very high decal cal was normal. But I did have C-diff! And now he said SIBO but not completely sure!!!!He took me off mesalamine and is trying to get me xifaxin samples. In the mean time I am so much worse! Backache, leg pain, cramps, diarrhea, etc! Does anyone know if you are supposed to taper mesalamine? His nurse told me last Friday to stop both the suppository and 4 daily pills I had been taking for a month with no taper. I got worse after that! Thanks for reading this ! I am so overwhelmed!

 

[my little penguin]

You don’t taper mesalamine .
For most Crohn’s patients it helps as much as aspirin for a brain tumor (not much at all )
What did they give you for c diff ?
Are you on prescription probiotics ?
You can have horrific ibs (no damage on the inside ) and still feel beyond bad .
Fodmaps or food diary …
I know for me (no ibd my kiddo has it ) onions ,onion powder etc and I will be in the bathroom all day and awake all night with abdominal cramps etc…
Bell peppers cause different issues
My non ibd kiddo is severely lactose intolerant
Similar issues
But saying it is not crohns or ibd
Just saying somethings there are other things not helping either

 

[Tina M]

They had me on vancomycin for the cdiff and now want to put me in Xifaxan for the possible SIBO. I feel like a guinea pigs they just don’t know what to do with me.