Crohn's Disease Forum » Your Story » Success Stories » Crohn's Disease before and after

04-10-2013, 08:11 PM   #1
Join Date: Apr 2013
Location: Buffalo, New York
Crohn's Disease before and after

I have had Crohn's Disease for 40ish years. Not diagnosed early enough. Went to Cleveland Clinic and had 5 surgeries there. They removed my colon and put me on steroids (ACTH by injection for a few years, then prednisone) and azathioprine. Had an ileostomy for 6 months which was then reversed.

I have been dealing with this but have found ways to make myself comfortable. I have found that it does not encompass my life as it did at first and I just seek out every bathroom when I go to a restaurant, mall, etc.

The only major problem is that because of the prednisone since 1975 and other meds, I have developed other problems. But I deal with them.

I am only sad that I wasn't as smart as I am today and would not have been taking prednisone all these years. But too late, so my advice to all of you is to find an alternative.

Thanks for listening and I am happy to answer any questions.
04-10-2013, 09:39 PM   #2
Join Date: Jun 2012
Location: St Louis, Missouri

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Hey Gillie, thanks so much for the advice. Do you have any advice for parents of children with crohns?
04-10-2013, 10:45 PM   #3
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Hope345's Avatar

Welcome to the forum.

Did you take Prednisone for many years?
My daughter took two 6 week doses and I hated it, but felt it was the best option at the time.

She is now on cortifoam every night. It indicates the exact same side effects as prednisone, but the GI said since it is a topical it will not have the same ones. I am just concerned about long term use.

thanks so much for sharing your story and i would appreciate your input.
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
04-11-2013, 01:59 PM   #4
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

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Hello Gillie and welcome to the forum

How are things with the tum now and what meds are you on at the moment?


DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
04-21-2013, 08:54 AM   #5
Join Date: Apr 2013
Location: Buffalo, New York
Not quite sure how to answer folks who have asked me questions. Help. I am doing okay, used to it by now. How are you?
04-21-2013, 11:01 AM   #6
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Join Date: Jul 2012
Location: Barrington, New Jersey

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Don't feel so bad about taking Prednisone in the past. I have had Crohn's for 36 years. When I was first diagnosed, the only drug choices were azulfidine and Prednisone so we didn't have much choices back then. Also, they didn't know back then about all the bad side effects of Prednisone.

I know how you feel. I am now being treated for osteoporosis and I also blame Prednisone for it.

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