Crohns is taking over - please help!

[bluebell140]

Dear all

I am 21 years old I was diagnosed with Crohns when I was 18. After many tests and colonoscopies I was hospitalised and immediately given steroid treatment, I was then put on Asacol and 6-mp. I was ok and on the road to recover for some time after this however I have had 3 relapses since 2 of which have been this year alone and to date I have had 5 courses of steroids. My doctor increased my 6-mp which as caused my hair to fall out. I am now back on steroids and about to start a 12 week course of Methotrexate injections..... I feel like I have lost the last 3 years of my life and do not know what to do next. Stress does not help my Crohns at all which is something I need to work on. The pain and bleeding seem to get worse everytime and no I feel that nothing is working. I am dubious about having the Methotrexate treatment but also know that something needs to be done. Would welcome any comments or advise. Many thanks Antonia

[noel44]

I am on the new drug Cimzia.And so far my Crohns is better. Not 100% mind you but better. I was able to wean off the prednisone which I had been on and off for last 5 years. You may do very well on this.I wish you all the best. Mary-Anne

[Moonbeam750]

I was your age when I was taking 22 pills a day for Crohn's and not making any progress on the disease at all.  At age 35 I was so ill I almost died and the doctors gave me an ileostomy.  I thought it would be the end of my life but it turned out to be the beginning.  I never felt better.  That surgery was in 1985.  I am still doing well. If you ever want to ask me any questions about the surgery please do.

Btw, my husband who was and still is a very good looking guy loved me and has stayed by my side in spite of it.  We remain a happily married couple after 30 years of marriage.  

[Zaklin]

Hello Antonia

Our 12 yr old daughter was diagnosed with Crohn's Colitis Jan-08 - she's been through the run of the mill "step up "procedure they have going on in Ontario Canada - where they start you on relatively mild meds ie: pentasa, then prednisone, then she went through nearly a year of imuran which did nothing for her.

Her Crohn's issues are the illeum, constipation (as opposed to diarrhea) abdominal cramping, anal fissure (being treated with cipro/flagyl & polysporin) loss of appetite is a big issue as well as headaches, joint aches and lack of absorbtion (nutrition). She of course WILL NOT Compromise her diet - she's 12 and wants junk food - we can't control that most times - she refuses to be "different' she's currently seeing a psychologist to deal with coping and stress - she's only a child so it' really tough on her.

The pentasa drug had a psychotic effect on her - it was awful and we're looking at trying the new Cimzia drug (clinical trials in Canada starting mid-august for pediatrics).

Remicade works for some but for others not - it's 75% human and 25% mouse derivitive... Humira which is also a TNFa blocker (biological med) is 100% human as is Cimzia...the idea is that Crohn's sufferers have proteins that attack itself/cells and these drugs suppress the proteins to stop doing that...in an nutshell...