My Story

[brico]

Hey all, I just wanted to introduce myself and tell a little about my experience with Crohn's disease. About three years ago I was diagnosed with Ulcerative Colitis after experiencing more than two months of bloody diarrhea, getting an abscess lanced, and losing 20 pounds. I was diagnosed with UC rather than Crohn's because my blood tests showed colitis. After the diagnosis I was placed on Asacol and Prednisone. Eventually I was weaned off the Prednisone and I only remained on Lialda. These drugs worked for awhile until about a year later I got really bad fistulas and again lost 20 pounds. When my doctor saw me after my fistulas had burst he was tempted to do surgery, but instead put me on Remicade. My diagnosis was then changed to indeterminate colitis because my blood showed colitis, but clinically it looked like I had Crohn's. I received my Remicade every eight weeks. The Remicade worked really well, but about six months later I started having really bad arthritis that made it hard to drive or do any other simple daily activities. My doctors then placed me on prednisone in addition to my remicade to help my arthritis. It took awhile for me to taper off the prednisone because the arthritis would return each time I got bellow 10 mg. As soon as I got off the prednisone, however, I was on a trip with some friends in California and i had to be taken to the ER because I was having really bad chest pain and shortness of breath. I found out that I had Pericarditis and remained in the hospital for three days. I was able to then check out and fly home early, but then I was checked back into the hospital at home two days later. I stayed in the hospital another three nights and had to have about 800 mL of fluid removed from my pericardium, and I was placed on a high dose of prednisone. I have tried multiple times to get off the prednisone, but the pericarditis returns each time. I am currently off the remicade too because my doctors believe it might be causing some of this. At this point I am feeling pretty good, I swim daily, go to school, and I am down to 7.5 mg of prednisone. I am hoping to get off the prednisone soon. Hope I didn't bore you with my story!

 

[DustyKat]

Hi brico and :welcome:

That's another WOW story!

You'll find many kindred spirits here that have had the same issues as you when trying to taper off the pred. It's good to hear you feeling pretty good, YAY!

I'm glad you came aboard as their are so many friendly, experienced and knowledgeable people here that will be able to give you support and advice.

I hope things continue to look up for you and please keep us updated on how you are going.

Take care,
Dusty

 

[Dexky]

Welcome Brico!! I hope they get you flying right soon. Have you been off Remi long enough to determine if it was a factor? Good luck!!

 

[Entchen]

Hi, and welcome to the forum!

 

[Zalanicht]

Crazy story. Welcome!

 

[ameslouise]

Hi Brico and welcome!

We all have a love/hate relationship with Pred! I hope you are successful in tapering off it soon. I also hope you are able to find a med that helps with the UC/Crohn's and resolve the pericarditis issue. (My hubber had pericarditis last year and it was scary! In his case, they believe a virus was the cause.)

Stop back and let us know how you are doing! - Amy

 

[Astra]

Hi Brico
and welcome

yes that's a wow story! poor you, I feel your pain! getting off Pred is a bloody nightmare! but getting to 7.5mg is a success, won't be long now til you're off it, good luck!
lotsa luv
Joan xxx