Not specifically, but my dr did give me Cholestyramine.  I think the mechanism is similar.  This is an off label use .  It's a bile acid sequestrant, and can help with acid output causing diarrhea.   It comes in a powder that you mix with liquid.  I found it easier to make a paste, swallow that, then drink a glass of plain water.  

girlunky posted:

Not specifically, but my dr did give me Cholestyramine.  I think the mechanism is similar.  This is an off label use .  It's a bile acid sequestrant, and can help with acid output causing diarrhea.   It comes in a powder that you mix with liquid.  I found it easier to make a paste, swallow that, then drink a glass of plain water.  

 

 

 Yes, I took Cholestyramine for years, no longer works for me. 
was wondering if any one had success with Colesevelam pills?

As Girlunky says, this looks very similar to cholestyramine. It seems to be available as a tablet or in chewable form (as well as powder), which might be more convenient to take. It may be just the thing for you, but I don’t know what you mean by “diarrhea,” since all J-pouchers have moderately loose stools. Some possible descriptions that would be clearer are things like 1) watery stools, 2) urgency, 3) frequency, or 4) watery, burning stools. Each of these might have different treatments, even though all could be called “diarrhea.”

Colesevelam seems to be more potent then cholestyramine, just curious to know if anyone has had success with Colesevelam pills?

ytcrockpot Do you still take Colesevelam? I’m another longtime jpoucher. Original surgery in 84, redo in 09. Nothing seems to help with diarrhea. Pepto is my go to otc medicine. Don’t want to start a biologic. Just started Colesevelam tonight and have hope since my son is on it for UC. I was just diagnosed with Crohns after all these years. They are so similar, I guess it’s hard to diagnose. Hope you find this old thread. Nice to hear from another longtime Jpoucher. Hope you are well!

@BarbieG posted:

ytcrockpot Do you still take Colesevelam? I’m another longtime jpoucher. Original surgery in 84, redo in 09. Nothing seems to help with diarrhea. Pepto is my go to otc medicine. Don’t want to start a biologic. Just started Colesevelam tonight and have hope since my son is on it for UC. I was just diagnosed with Crohns after all these years. They are so similar, I guess it’s hard to diagnose. Hope you find this old thread. Nice to hear from another longtime Jpoucher. Hope you are well!

Hi BarbieG,

Funny you sent this post now, the doctor just put me on Colesevelam powder this week, unfortunately it’s making everything worse.
I’ve been taking it in water or OJ, he wants me to try taking it in applesauce. I haven’t tried the applesauce yet. He also wants me to start drinking kombucha, starting with 1-2oz-3x a week. He also has me taking PureCell and in 4 weeks wants me to take PureBiOme GI it’s a non dairy probiotic.
I’m in the same boat as you, nothing works, pepto & Vicodin is my go to and definitely don’t want to do biologic.
This is my pcp suggesting this, he’s a regular doc but also thinks outside the box, trying to come up with other ways instead of taking biologics. My pcp thinks I have chrons but my gastro says no.
I love my gastroenterologist but she wants to  put me on biologics.
mite very nice to hear from longtimers, if you’d like to send a PM, we can stay in touch.

ytcrockpot

i will definitely keep in touch. It’s my daughters birthday this weekend so I’m busy with that. So next week I’ll PM you. Like to hear your Jpouch life stories.
Maybe the orange juice isn’t agreeing with you. It has lots of sugar. I can’t eat too much sugar without it tearing up my gut! Try the caplets and maybe that will help. I take them and it takes time to wok. I’ve even taken Pepto after taking Colesevelam. On my second day and get gas after taking them. It’s inconvenient not taking other medicine or vitamins for 4 hours after. Just read about side effects, one is a little unnerving about low blood sugar. I do lots of gardening in the heat and not a big eater. Feel better empty.  I’m afraid someone is going to find me passed out in the yard one day!
Give it time to get into your system. I usually give up on any new medication if I don’t see results in a week. But like I said, my son is on it and it does help eventually! Hope it helps you. This new digestive system can be frustrating at times. We’re all in this together. Wish found this site before surgery but there was no internet!

does Cholestyramine work right away? or does it have to build in your system? i have as my doc gave it to me after my gallbladder surgery but i never used it.. wondered if i could try it when i do get watery stool?

Hi,

It worked right away. In fact, they gave this to me last June in the hospital post takedown.

I had three full doses one day and it completely constipated me for 48 hours. I obviously did not take it again.

i have it in my house just in case, but have not used since then for fear of constipation, but if I did I would start with  half a dose or less and see how it goes.

I would love to be constipated! I’ve been taking it for a few days & it looks promising. I did take Pepto the first day after 4 hrs. But now it seems to be slowing my system down. Keeping my fingers crossed. Usually I qui after I don’t see results but my son is on it and he has to take it for a few weeks before he saw results. He still has a colon, just IBS & microscopic UC. HANG IN THERE. DONT WUIT IT FOR A FEW WEEKS! I have hope!

Are you guys taking the powder or pills?

I take the pills.

The prescription I have contains packets with 4gm of powder to be mixed with a liquid like orange juice.

I stopped the medication. Was up most nights in the bathroom. Feel better wo it. Went back on Pepto. Eating lots of rice, sourdough bread, eggs, potatoes & lean meat. Next move, Dietitian. I’m going to eat the correct food to heal myself! Tired of drugs!