HealingWell
Search Close Search
☰

I wish remission meant an end to the D.

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/18/2012 3:29 PM (GMT 0)
Really frustrating to beat every symptom but the D two-three times a day. Probiotic paired with high fiber and fiber tablets slow me down but not enough. Disheartening to see what I just ate a few hours prior already on its way out. I guess remission with no T.illium means I gotta live with excellerated bowels. GI says I shouldnt have short bowel syndrome as I lost only like 16 inches but no valve between the two intestine causes the D in most cases right? Malobsorbtion of B12 and bike salts? I had relief for about a month and it stopped. Back to slamming fiber tablets with every meal I guess. Man, this disease sucks.
Posted 9/18/2012 4:46 PM (GMT 0)
Oh Will...I understand.  I actually have been mostly in remission most of my 22 years, but the D never went away (18" off my TI) and it only got worse with the gallbladder removal.

Have we chatted before about cholestyramine?  I can not handle the fiber supplements (think doubled over in agony), but this stuff has given me my life back...and my dear husband thinks it is fantastic that I am not squealing around corners driving home to the bathroom any more or we can actually make it through a trip to Home Depot without venturing into the appliance section (I still think they should have the restrooms in the plumbing section!).

Posted 9/18/2012 5:46 PM (GMT 0)
We have not. I saw a post elsewhere about that substance as well as another OTC herbal deal. Began with a P I think. Fiber tabs and probiotics were working but then, well honestly, crapped out on me...quite literally.
Posted 9/18/2012 6:04 PM (GMT 0)
I think the herbal you read about was psyllium powder.  It had the same effect on me that the fiber supplements did, but there are others that have had success with it.

I would talk to your GI about the cholestyramine if fiber is failing you.  I get the generic and sugar free (artificially sweetened) version.  A long time ago I used the brand name Questran and it was amazing back then too - they just stopped making the sugar free version.  The sugar sweetend one made me nauseous every time I took it.  It has a little bit of orange flavoring in it.  I add 1 packet a day (low amount per others on here and my doc loves I need only 1) to pulp free OJ couple of ounces and rinse the "crumbs down with a little more water.

Hope it can help you like it has me!

Posted 9/18/2012 7:19 PM (GMT 0)
Is it something you can pick up at like Walgreens without script? I won't see my doc for another three months. How much does it run?
Posted 9/19/2012 5:24 AM (GMT 0)
You may have some IBS issues as well Will...having D regarding crohn's though means you're not in a full remission.
Posted 9/19/2012 11:30 AM (GMT 0)
Will--it is a script only item unfortunately.  I beleieve it is actually intended as a cholesterol reducing med and the coagulation of bile and fats is a side effect that made it work for many with D.

Give your doc a call, maybe you can work out something over the phone until you get in.

Don't mean to sound like I am pushing this either...just thought you might get the relief I did.

Posted 9/19/2012 1:11 PM (GMT 0)
Had my six year scope a few months back and came back clean. No active disease or polyps. Just one internal skin tag. One GI thinks my trouble is no closing between bowels leading to absorption. Doc saw slight irritation and suggested pentasa but we have already discussed he said the irritation wasn't showing anything to him my disease was ramping back up. Thus, declaration of remission. If I'm not in remission and this is my only symptom, I'll take it.
✚ New Topic ✚ Reply