Today, Dec.5,2011, is my 13th. anniversary since being diagnosed with U.C. So I'm joining this forum to mark the occasion. I've been on what seems like EVERY medication for I.B.D. and unfortunatly the only thing that has helped has been Prednisone, which I was on for 7 years! Now I've been tapered off it for the last 18 months and flare ups have been quite severe. I've also been on Apriso for the last year and a half and Aza. for 11 years. I've stopped the Aza. about 4 weeks ago and I'm actually feeling better. I've noticed that I no longer have an appetite and must stick with a restricted diet, but that's better than suffering the effects from the disease. That's my story, if anyone else has taken Aza. for a long time then stopped it and is feeling better or worse, I would be interested in hearing about it. I'm not chained to a computer and only go on line about twice or three times a week so if you write please be patient as it may take a while before I can get back to you, but I certainly will.
My Diagnosis Anniversary
- Thread starter Rick0517
- Start date
Help Support Crohn's Disease Forum:
Angrybird
Moderator
Happy anniversary! I had my nine year anniversary in July and this was celebrated with the knowledge of having to have my first op, not bad going really. WOW 7 years on the pred, how on earth did you manage it??? I was on Aza for over a year maybe even two but this was stopped due to the effect it started having on my white cell count so I did then feel better for coming off it. Welcome to the forum 
xJillx
Your Story Forum Monitor
- Joined
- Jan 7, 2011
- Messages
- 2,391
Hi Rick and welcome! I am sorry to hear you haven't had much success in finding a treatment that works well for you. I can't believe your doctors allowed you to stay on pred for 7 years! Have you suffered any long term side effects? I sure hope not.
Has there been any discussion of next steps to take as far as treatment. It can't be good having flare up after flare up. I sure hope that these will stop, and you start feeling better soon.
Has there been any discussion of next steps to take as far as treatment. It can't be good having flare up after flare up. I sure hope that these will stop, and you start feeling better soon.
David
Co-Founder
Welcome to the community Rick, I'm glad you joined. How are you feeling these days, have you had any major complications? Out of curiosity, as you mention the restricted diet and lack of anything but prednisone working, have you tried any form of enteral nutrition to try and induce and maintain remission?
I hope you become a regular member of this community. All my best to you!
I hope you become a regular member of this community. All my best to you!
Thanks for the welcome.I'm having a vicious sycle of relapsing and feeling better. I think the change of seasons might have something to do with it. I am usually worse from Dec. thru March.I have never heard of enteral nutrition but I am going to check it out. Desperate times call for desperate measures! I have found restricting myself to eating only oatmeal (made with water or soy milk) and later on pasta with olive oil for a few days seems to help. I'll check in on this forum whenever I can but I'm not a big fan of Face Book.Thanks again for the welcome.
David
Co-Founder
Hi Rick,
If you have issues during the winter months like that, then the problem is quite possibly related to Vitamin D. I'd strongly suggest giving this thread a read.
If you have issues during the winter months like that, then the problem is quite possibly related to Vitamin D. I'd strongly suggest giving this thread a read.
