Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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Endocort and Asacol?

TinaMichelle
TinaMichelle
Hello, Everyone. I have mostly been monitoring this list. I was a bit apprehensive to post given that I seem older than some of the rest of you and my symptoms are milder. I was diagnosed with Crohn's in 1999 and for the most part, taking doses of prednisone a few times a year kept it in check along with maintenance doses of Asacol Then about four years ago now--hard to believe--I was diagnosed with primary immunodeficiency. Primary immunodeficiency adds a layer of complication to everything. So now my doctor is unsure whether I am having a Crohn's flare or whether Crohn's is in remission and I am dealing with lymphocytic colitis, another form of IBD. The treatment for both is the same: Asacol and Endocort. RIght now I am on 12 Asacol and 3 Endocort a day--started on Endocort a week ago.

The thing is: my symptoms are worse. I am running fevers every night and I am still pooping water like a goose. My side hurts, my joint hurt--typical flare, right? Any of you take Endocort? How long does it take to work?

Any information you can provide would be appreciated....

Thanks, Tina
buster2701
buster2701
I am probably the oldest UC patient ever. I have been taking Asacol for a while. I understand the joint pain and runny stools when you are flaring. Kind of sounds like the Endocort may have causing you some issues. Might be worth calling the dr. or at least the nurse and reporting these symptoms. Good luck and hope you feel better.
deleted_user
deleted_user
Hi Tina and welcome,
I have been on Endocort for almost 30 day to tame my last nasty flare. I'm taking lialda also @ 3 a day with 3 Endocort also. I'm in remission with only big time pressure bloating to deal with. Endocort has pushed my monster back in remission with no side effects unless bloating is one. I noticed the pain and bleeding stop about two weeks in. Good luck
deleted_user
deleted_user
I am 73 years old and have had uc for about 10 years. Have taken the above meds and finally discovered that it felt like they were poisioning me. went to a different dr and he put me back on imodium two tabs three times a day and within a month or so things got better. I lost those ten years that I was so sick.Became such a home body. Husband had to get groceries and such. Afraid to leave the house for fear of an accident.Could not even go out to the garden. It left me weak and run down. Have to use a walker which humiliates me. The best thing that happened was that I found a wonderful person from this group who took me under her wing. Enough about me, I sincerely hope that you can find something that works. I feel empathy for all of the young people who have a lifetime of missery to deal with this problem. Good Luck to you. Donna
deleted_user
deleted_user
I've been taking Entocort for the last month, and I was seeing huge improvments for the first 3 weeks, and then *I think* I ate some cookies one day and it through me back into the pit of pain :( And now I can't seem to get back to normal :/ Entocort takes up to 2-4 weeks to feel some sort of relief at 9 mg a day. I don't believe Entocort is causing you problems, because the only real side effects you feel are headaches, nausea, and dizziness- and it's suppose to focus all it's good stuff on the end of your long intestine for inflammation. Might be the Asacol? I would ask your dr to be on the safe side. Best of luck to you!
MTM999
MTM999
When I tried Asacol and Endocort it actually made my symptoms much worse. It may be your body telling you that it does not agree with it. I would call the Dr and let them know what is going on.
bart4u
bart4u
Keep in contact with your doctor and tell them what is happening to you. Maybe you need a different medicine? Some meds don't work the same with everybody's body.
imneiss
imneiss
My bathroom issues always seemed to be triggered when I had dairy...and high sugar the least little bit throws me into a bleeding frenzy. Thank goodness avoiding these things helps me go back to normal. Well - I think I'm normal any way !
Seriously though, Asacol was one of the drugs they tried to give me to help with symptoms and instead my symptoms seemed worse - I'd be concerned with the fever...keep your doctor informed. I have night sweats just awful and run hot all the time - My primary care doctor seems to think it is all just a part of menopause... sure hope it's not CD/UC related. The joint aches aren't as bad for me.
Just wanted to mention how glad I am to know there are some out there older than me with these issues - Gives me hope I could live to be older... : )
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