My story and Need Help

Hey everyone, I'm 20 years old and was recently diagnosed with CD this past March. Things started off slow with very little symptoms even though my doctor said it was a very extensive case of CD. I was told my esophagus, small intestine, and large intestine were inflamed in many spots which made sense because I couldn't swallow food and was bleeding when I had movements. I started on prednisone which really helped me alot. I felt better within a week or two. It initially seemed like an easy disease to deal with until a couple months past and I really started to notice changes in my every day life. I all started when I was 2 hours from home at college. When I got back home for summer break, I was excited to be free and have lots of fun. However, they wasn't possible because my symptoms really started acting up. I missed at least 1 day of work a week because I was really embarrassed and didn't want to be running back and forth to the bathroom or dealing with stomach pains in the office. My doctor had me on 6mp for a while until we decided to try an increased dose of 6mp and cipro instead of going the remicade route right away. Things seemed to be improving for a while until things took a terrible turn for no reason. I felt I was doing everything right, staying away from the right foods, etc. This had been going on for a month or so. Now I'm back at college and really don't want to deal with my symptoms during classes and around my friends. It makes me feel very uncomfortable. This past Wednesday I went to see the doctor who asked how things were going and I told him all the details about how many times I run to the bathroom, how many pains I have, where they are, and (worst of all) how many times I've had movements while I was sleeping. We both decided it was time to step up to remicade. I'm curious to hear some positive stories and experiences with this treatment. I need some positive feedback because I'm a little skeptical about it after reading some of the negative things in some forums or in the news. My first treatment is this coming Wednesday. Can you all enlighten me on your experiences to boost my confidence? Thanks!

Hi Odin4 I'm sorry to hear the Cronhn's is giving you grief. I was diagnosed 7 years ago when i was 19 with Crohn's. I started out on the "light" drugs i.e., pentasa, asacol, colazol.rowasa enemas, azulfadine, you name it I was on it. Of course then there's the steroids prednisone and entocort. Been on both. Nothing was working. Then my gi doc put me on 6mp. Felt fine for a couple of months then flared. Went in and out of the hospital many times over the past couple of years. Then we went to remicade. I hated taking the remicade. Hooked up to an iv infusion while they dripped this horrible crap into my body. but you know what it worked for about 4 months then i stopped responding to iy. but for the while it was great. i felt so much better. go for it. if it works for you which i hope it does it's well worth it. don't be afraid. then i went on humira. also worked for a while then i stopped responding to that as well. ended up in the hospital 4 weeks ago with 104 and 105 fever. I ended up needing a temp. ileostomy. the surgeon removed a foot of my small bowel. fortunately my crohn's was only in the terminal ileum and a little bit of inactive crohn's in my rectum. they removed the diseased part and i am disease free right now. don't be afraid to try all the medications to try to get you into remission. i know life feels like a living hell when the crohn's is flaring. just try to stay positive and i hope everything works out well foryou. do the remicade. don't be afraid.

I just had my second Remicade infusion. I had the first one while I was in the hospital one month ago. I was on TPN and very sick. Now I am back to work and feel better than I have in a long time. I'm still weak from being so sick but I feel good. There are some scary things that might happen with this med but losing parts of my insides is scary too.

Hi and Welcome,
I have been on Remicade for 5 years and It has helped me alot. I hope the remicade helps you.

The remicade has been wonderful for me! I was steroid dependant and nothing else would work...now I'm off the prednisone and the best I've been in ages. "GO 'CADE GO"!!!

Good luck to you and welcome!

Bev

Well I just got my first infusion yesterday and so far I've been feeling better. I have alot more energy than I used to and am not having any problems after I eat. Stomach cramp here or there but nothing compared to what I was experiencing. I've been eating alot today, almost as if I hadn't eaten in weeks. I didn't expect to see this type of improvement on the first day after the infusion but I'm not complaining one bit. One thing I'm also hoping for is a large amount of weight gain now that I'm taking this medication. I've read articles on unexplained weight gain and, honestly, I hope it happens to me because I'm pretty darn skinny. Has anyone experienced weight gain when they transitioned to this medication? If so, how long was it before you noticed the difference?

lol this thread makes me wanna try remicide,i only ever gained weight when had my eliostomy put on tons of weight it was great! once you get you crohns undercontol you should start putting on weight,im still waiting to get better enuf to put on weight

Starting college is tough on Crohn's for several reasons. First is the stress. The known causes of relapse include - gut infection, stress, NSAIDS (aspirin, ibuprofen), alcohol and antacids. The diet connection is also harder to control unless you are cooking all your own food - you just don't know what they put into the food that is made by food services, restaurants and so on. There is also the tendency to eat more sugar and starch which can cause trouble. Given that controlling all those factors is well-nigh impossible at college, what choice do you really have?

hate how with crohns you have to be very careful what you eat.people think your anonrexic like b4 my surgery i wld haf half a ham sandwhich and tke the crusts off when i use to go out for lunch with my mum,and ppl wld stare at me,had the iron infusion nurse trying to fatten me up by asking constanly if i was hungry,i got dwn to 105 pounds when i was real sick and now im 119pounds,how long have you been sick with crohns?