Community Forum

I've had CD for almost 15 years now.  My doc first diagnosed me with ulcerative colitis, then changed it to CD.  I have been through many different medications & sometimes feel like a guinea pig.    The most helpful to me was Remicade.   My doc keeps pushing me to go on Imuran, but I refuse.  I do not want to face the side effects and refuse to put my body at risk of developing more disease/problems just from another medicine.  He makes me mad because he makes it seem like that is my very last alternative & there are no other medicines out there.

I joined this group today looking for a friend that also knows what I go through. CD can control your life if you let it.  For the most part, I try to forget about it when I'm in remission, but it always has a place in my mind, in the case that a episode could occur at anytime.  I am currently having episodes, after being in remission for a couple years now.  I'm feeling down in the dumps & my husband just doesnt get it.  Some people at work feel bad for me; but they really just dont understand.  I'm glad to read some of these posts & see I'm among others now that know EXACTLY how I feel.  Glad to join, hope to talk to lots of you.

 Reply posted for jemt31999.

I too have CD for 15 years. I was first diagnosed when I was 7 years old and since then have been on every oral drug, methotrexate (self injected when I was just 14-15 years old), and finally Remicade. Remicade worked wonders for, and my dr also wanted me to go on Imuran but I refused because it hadn't helped me in the past. I told him that as long as the Remicade is working, why do I need to overmedicate? Let's keep it simple. Your dr should respect your decision and shouldn't pressure youto take things you don't want to.

Since I got pregnant with my son, Remicade started to stop working for me. I would need to get infusions more often than my usual 8 weeks, and after my son was born I had a terrible flare up. Worse than ony other I have had in the past 15 years. At my last Remicade infusion, I had a sever reaction to it, and am now in the midst of switching to Humira. I am taking prednisone until my insurance company decides to approve me for the Humira.

I guess my point here is, if you feel that what you are on now works, then don't feel pressured to take more than that. CD is complicated as we all know, and medications keep us under the pain radar for only so long, so I never liked to take more that necessary.

 Reply posted for jemt31999.

My daughter was diagnosed last summer with UC/CD (not sure yet, leaning toward CD).  If I understood your post, you were able to go years symptom free?  She is 16 and in the past year has had four flare ups.  She is allergic to sulfa drugs and can't take pentasa (migraines).  She was on a massive amount of steroids this past flare (started at over 100) and has been on 6MP since then.  She stayed symptom free until last week, three weeks after they lowered her dose of 6MP, she has been off the predisone for over a month now.  We are getting so frustrated!  All of the medicine seems to have so many side effects I don't want her on any of them, but she can't be without them either.  I am not even sure where I am going with this post... maybe just venting a bit.  It is difficult to see her so frustrated and trying to do well in high school.  She will be back in the hospital next week and school just started two weeks ago!

 Reply posted for jemt31999.

Hello,

I know exactly how you feel as I have had Crohns now for 33 years and it can be very trying, I am having a flare now and had to add Pentasa and Prednisone to my daily medication, now my doc added Flagyl and Cipro not fun. 

I have been on 6mp (another form of Imuran) now for 19years and it has done wonders for me.  It was a very hard decision for me to go on but at the time no medications would work for me anylonger, I have tried Remicade and I have a severe allergy to it, because of this I can not try Humara. 

The best medication I had was a Trial I participated in 5 years ago it was a human growth hormone.  This was the best I had ever felt my entire life. It has not been approved for Crohns patients.  Very sad.  Things will get better for you,  try to stay positive and know that there are many of us who know exactly how you feel.  Be well and I will put you in my prayers.

Littlestar

 Reply posted for jemt31999.

Your not alone...... I wish this was easier said than done but IT DOES GET BETTER.. there is hope and when you are in remission you are on top of the world and when your not I KNOW  how bad it could be ...

I am recently recovering from a flare .. i think one of my worst ,,,, it is relly hard and i to feel alone sometimes...i have not left the house since friday ...

lets chat more ... do you have aol to chat my screen name is divotrl

your freind

jared