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I’ve been dealing with symptoms of “Butt burn” for just over a year now. (Urgency, frequency, burning during and after emptying pouch). Symptoms seem to worsen in the early afternoon and subside by the evening. I had an IPAA in 2009 and have been relatively good, since. A couple cases of pouchitis, and twice-yearly blockages.

I went on a heavy dose of Probiotics (Visbiome) in December 2019 to treat my symptoms, and over the course of 3 months, weaned from 4 to 1 sachet per day. They seemed to really help, and I was in decent shape for many months. (Albeit, not my regular self). In the last few weeks, my symptoms have started to return. I’ve had two in Dec, one last week, which both indicated no signs of disease whatsoever. 

I brought up the possibility of bile acid diarrhea, and was prescribed Cholestyramine which I’ve been taking for 5 days. I feel no positive change. How long does it take to work? If this doesn’t solve my problem I truly don’t know what options are left for me.

side note: my symptoms started in the final month of my pregnancy. I am still nursing 2x/day. I was diagnosed with obstetric cholestasis at around the same time my symptoms presented. I sense they’re linked but I’m not sure.  

Original Post

To anyone that might be reading this in the future...I just wanted to give an update. 
The day after I started this thread, I bumped my Cholestyramine dose from 8 to 12 grams a day. 12 was the initial recommendation by my doctor. He suggested that I taper down if I can tolerate it. I took it upon myself to start at a lower dose. I was on that dose for a week. Now that I’ve been on 12g for just over a week.....Urgency, gone. Burning, gone. Frequency, gone. Consistency, firmer. This is the best I’ve felt in years. I’m not exactly sure if the meds just needed a week to kick in, Or if 12g is the therepeutic threshold needed to see results. 

my only question now, is...why now? Why, after 10+ years of having a pouch have I suddenly developed bile acid diarrhea? It’s been a year of trying to solve this. The only two links I can think of are: nursing hormones, and obstetric cholestasis. If anyone has insight, I would appreciated it. Hopefully by the time this thread gets revisited, I will have an answer. I will update, if I do. 

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