Hi

[Bladegirl]

Hi,

I am 31 years old and although I am new to the site I was diagnosed with Crohn's in Oct 2000. Since I was diagnosed it has never been fully controlled and I have suffered terribly for the 9 years that I have had it. I started off by taking just Asacol which did nothing, I have been on steroids several times over the years and have currently been taking them for the past 6 months and am still on them. Unfortunately I am a steroid responder so when I take them I get Glaucoma. As well as the steroids I am currently taking 100mg of 6 mercaptopurine and 4800mg of Mezavant XL. I am in the situation that the side effects of all the drugs I am taking are as bad as the disease itself and even with all these drugs the Crohn's is still bad.

The doctor is now considering Infliximab but I have read about the side effects and am worried about them, and the doctor is also considering surgery.

I'm glad that I have found somewhere that I can talk to other people as most people don't understand what it is like and think you just have a bit of tummy trouble they don't realise that on a good day I go to the toilet 8-10 times and am in constant pain.

Thanks for listening

 

[forum contributor]

Welcome, Blade! :bigwave:
I'm kind of new here myself.
Sorry to hear about the tough time you're having. At least you found this forum, where everyone seems to be extremely caring and understanding.
I hope you find some intestinal peace soon!
Keep us updated.

 

[Guest]

hi Bladegirl welcome to the forum!

i can imagine how fed up you are, pain is horrid full stop, but suffering 9 years of it plus all the lovely side effects of meds is just unfair

many people do seem to do well on infliximab, and if this seems to be the correct drug for you then try not to dwell on the side effects too much. on the other side of the coin, if one surgery is going to get rid of all the pain, & give you your quality of life back, then that is seriously worth considering.

good to have you here - i look forward to seeing you around the forum