Frustrated!

[Tina M]

Hi everyone. I am Tina and I am new. March of 2023 I started with diarrhea many times a day. I had always been regular up until then. I was having trouble making it to the bathroom. My GI doctor did a colonoscopy and diagnosed me with lymphatic colitis. Many meds, stool samples, bloodwork etc and I didn’t get better. My fecal cal was high. So since I was getting worse ( cramps, body aches, many mucusy diarrhea moments daily) she did an endoscopy and flex sig. she then changes the dx to Ulcerative colitis but in her words , you are not hitting anything out of the ballpark diagnosis wise. I switched to a different specialist at a Crohn’s and Colitis center. He repeated the colonoscopy and said possible Crohn’s. But he insisted on doing more stool samples. He also came back and said I have C-diff. New samples showed normal calprotectin levels. He says I might have SIBO. I am so fed up! I am so crampy, average about 6 plus diarrhea movements a day, body aches but yet after a year plus don’t have a true dx. It’s been over a year! I wrote this while on the toilet ! Sorry, I just need to vent.

 

[Guerrero]

I guess you tried to adjust your diet for SIBO (low fodmap) and it didn’t work?
Bile acid malabsorption could also lead to a lot of diarrhea and is often under diagnosed, did you check that or tried something like Questran (cholestyramine)?

 

[Tina M]

Thanks for writing back. Initially I tried all kinds of diet changes and nothing worked. My first doctor was big on giving me meds but not giving them time to work. I do remember being on Questran but briefly. This doctor basically said because my fecal cal is normal he thinks I have SIBO but doesn’t know for sure. He is trying to get the pharmaceutical company to pay for Xifixan and took me off the mesalamine he had me on. I feel like a guinea pig. It’s been over a year and I feel like I know nothing. But so far in the past hour I have had 4 trips to the bathroom and am so crampy. Hoping his office calls today with news.

 

[Guerrero]

What are your doc suggestions to treat SIBO?

 

[Tina M]

That is the thing. He said I might have it and suggested xifixan. He told me it was very expensive. Try $1400 at cvs with insurance for 14 days. So they are working on getting me samples from the manufacturer. That was as of Monday with no update. Again he didn’t test and said I might have it. I kinda am fed up. I mean I might be pregnant but at 61 doubt it! lol! Really though after a year of so many tests and so many meds plus so many diagnosis, I am sure you all understand my frustration! Especially since I have had 6 bathroom trips and am cramped today!

 

[Guerrero]

Xifixan is rifaximin, it can indeed help with SIBO. Prices in europe for rifaximin are definitely much much lower (less than 10€ for 12 200mg tablets).

I can very much understand you frustration, i’m feeling unwell too with a lot of bloating and some episodes of diarrhea, it clearly affect my mood negatively.

 

[Tina M]

I am still learning about this all. As I said they aren’t even sure I have SIBO. I hate just blindly be given medication. I am also sorry you are having issues. This stuff really sucks. ( as I wrote this in the bathroom.. 9th time today).