Hello from Washington State…ideas for me?

[CathyCat]

Hello, I am hoping a few of you might have ideas about things I can try to calm my poor guts.  I’ve had diarrhea flare ups for more than 15 years…lately the bouts are more frequent and long lasting.  Urgency is a problem, though I rarely have accidents, and now I’ve developed pronounced gurgling and abdominal pain.  This current flare up causes 5-6 diarrhea episodes a day, even though I’m not eating very much.  I still do some paid writing work which thankfully I do from home.

The first GI doc I saw diagnosed me with microscopic colitis, therefore I’ve had a couple courses of budesonide which didn’t help much.  I’ve now had three more colonoscopies and my current GI says I don’t have microscopic colitis…all he has remarked on is my “torturous” colon.  An X-ray (with delightful barium) also shows my intestines are kind of piled on each other, but no one seems to think it’s an issue.  I’ve never been constipated, quite the opposite.  And no scan I’ve had shows any blockage.

I am negative for celiac and Chron’s, and apparently for BAM as well (cholestrymine was not helpful).  I have had the joy of collecting poop into vials many times ( with those silly tiny “spoons,” there’s got to be a better way!) and all those tests were clear too (fats, bacteria?).  I’ve also collected pee in a jug for 24 hours.  Who knows what that was for!  Seemed like a useless bonus aggravation.

I take vitamin C, D and calcium daily.  I’m on a low dose SSRI—should I consider a different  antidepressant?  I am trying Nerva hypnotherapy out of desperation.  So far it hasn’t helped but it’s early days.

I know about the Fodmap thing.  I have tried going gluten free and dairy free, but honestly I would have a very hard time restricting fruits, veg, and dairy.  I don’t eat much meat at all, but I do eat eggs.  All along I’ve felt that foods may contribute to my issues but they’re not the cause.

I do have abuse and anxiety in my background and have been to therapy.  I know this kind of history is a risk factor.

I believe the next treatment on the hit parade for me may be Xifaxan.  Not sure that will help…but I’ve not been given a breath test for SIBO.  Would the barium X-ray show that kind of bacterial problem or should I request a breath test?

My doctor is ok, not the kindest but he is responsive.  Is does seem like the two of us are just flailing about at this point, though.  Do any of you have ideas for me?

If you got through all this, thank you!

 

 

Edited March 12 by CathyCat
Typo

[Jeffrey Roberts]

Dear CathyCat,

Thank you for the very thorough posting. The pee collection might have been to measure your absorption of B12, perhaps it was a Shilling test. Likely to also rule out any suspicion of IBD in your small intestine.

An SSRI doesn't help the situation with diarrhea. It can contribute to it. A tricyclic antidepressant or a hybrid would probably offer you more benefit without the D.

Has anyone suggested Lotronex or Viberzi to you to manage the diarrhea? Something else that is getting attention due to a recent study from the UK is a titrated dose of Ondansetron. That's similar to Lotronex.

Xifaxan is definitely an option though you can only do 3 courses of it and then you can't repeat it. It's not a bad option unless you have a history of a problem with antibiotics.

Nerva and Regulora (FDA-approved) might help reduce the urges. Mahana IBS is also helpful and FDA-approved as CBT via an app.

I hope some of this is helpful.

Jeff