• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New to Support Forum...

Hello All,

I am new to any sort of support forum for my Crohn's Disease. I was diagnosed back in the spring of 2001. After months of throwing up everything that was put in my belly and numerous tests, I was told the wonderful news about it.

I am a mother of 3 wonderful kids.

I have tried numerous medicines for my disease and some worked for a bit and some not at all. One even gave me pancreatitis...joy!

I have had surgery once to get rid of the badness..which of course it all came back not even 6 months later. Many tears were shed with that. I've had numerous stints in the hospital and have wanted to give up so many times. If it wasn't for my kids I probably would have.

Thank You for reading. Hopefully here I can get an ear when my world seems bleak since I don't know anyone else that has what I do.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and :welcome: to the forum. How are things for you right now? Are you on any medications, if so which ones? Please do have a good nosy around, there is a lot of really helpful info and support here from a great bunch of people :)

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Hi CM and welcome :) I'm so sorry to hear you've been having a rough time of it?

If you're open to sharing, how are you feeling these days and what is your current treatment regimen? What all have you tried? There's lots of options out there including some really exciting ones in the pipeline. So don't give up!

We're here for you!

*hugs*
 
Right now I'm on 400 mg of Cimzia every 4 weeks...1 Nexium a day for ulcers...I'm slowly tapering off of Prednisone (which I truly hate) and Percocet for the pain...

2 weeks ago I was released from the hospital with uncertain prognosis...they don't know if it's crohns, ulcers or a huge cyst I have growin on one of my overies that is causing so much problems...:(

I've tried a lot of different meds...I remember starting on Sulfasizine (sp?)...I've tried Humira (that led to my surgery) I've been on Remacaid 3 different times...Imuran have me pancreatitis...my Dr is afraid to try me on different things cuz as he put it "I'm burning a lot of bridges on what seems to be working"

Cimzia doesn't seem to be helping at all either...I've been taking it since December of last year...and I really hate having to self inject myself...lol
 
How difficult this must be for you. I, too, have been on the medication whirlwind, but have finally found that Humira helps. I'm not 100% perfect, but it's certainly a livable life. For awhile, I wasn't sure I'd ever find something that would make me better.

Before I went on Humira, my doc gave me the 'burning bridges' talk. Scared me to death. I'd just gotten out of the hospital for sepsis and was beginning to believe I'd never make it. I think the one thing that has helped me the most is just the acceptance of pain, that I'll never be perfect, and that some days, I'll have to spend in bed. Since I'm an active person, this one was the hardest of all.

I will keep you and your family in my prayers. And don't give up, new medications are coming fast and furious. Someday, there will be a cure.
 
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