Crohn's Disease Support Group

Helo everyone, I was diagnosed with crohn's when I was 20. I was wondering what was happening to me when I would always have a stomach ache and the summer I got back college I lost 40 pounds. I was finally convinced to get a colonoscopy and thats when I got the news. They tried many drugs on me but my body would not tolerate many of them. Umuran was the worst! 50mg would drop my white blood count to 2. I tried azacohl (sorry for the spelling errors), Pentasa (16 pills daily) and of course the dreaded prenisone. I was on the steroid for 2 years!!! Talk about a weight gainer!! I was 145 before taking and ended up 215! It took about a year to finally get to a med that actually worked. Remicaid did it for me. I was on the med from 2000 to 2005 and then my insurance changed and we all know how that goes. It was about $8500 every 8 weeks. I was feeling very good at that point. I did not take any meds from 2005 till 2010 and no hospital visits during that time. I am now 34. Last year was the dreeded year. 3 times in the ER. June of last year I started Humira. If you have good insurance this might work for you. I had too many side effects with this one. Dont want to take it anymore. It is now April 2011 and I have had joint pain for a couple of years. Mainly in my feet, ankles and knees. Very tired throughout the day. Not good for my profession, because Im a firefighter. Im not taking any meds because we are trying to get my white blood count back up. Ive been off meds since Dec. Waiting patiently, not really!

Hi..Welcome..

We all are so similar..I too was on Remicade..it gave me terrible headaches and I ended up having to sell my piano and a diamond ring to pay off the dept..also mmost meds make me sick..You are not alone ... I havn't taken any meds...am trying natural things...It seems remission is so long ago...I hope you are having a good day and find this site to be of help to you..take care of yourself and stay connected !!

Blessings,

Starshine

Hi Eric..Sounds alot like what I went thru when I was trying desperately years ago to be diagnosed. Meds and more meds. Imuran made me deathly ill and I ended up with pancreatitis. Of course the asacol and flagyl. Along with prednisone which my GI switched me to entocort last time and I must say it worked much better for me. Hardly the weight gain like prednisone and no moodiness. I've never been on humira or remicade. I started cimzia in 08 similiar to Humira. And for the first time in 20 years of crohns I found something to work other then having surgery to removed diseased intestines. Now I deal with the joint pain like you.

Have you spoke with your GI about not having insurance? I've learned the hard way without them crohns will creep up on you and bring you down so hard you think you'll never get up. Some of the pharmaceutical companies will offer you free meds if you qualify. Anyway I am glad you sought support here. Its been a lifesaver for me in my deepest hours dealing wth a disease no one understands unless they are in our shoes. Hugs and welcome.

Question...??

Does or did everyone get really crabby from Prednisone??

I was a walking witch.."which" I am not...

You already know that I am just crabby in general.

Hi Eric,

Welcome to our forum.

Remicade almost killed me, Prednisone did rescue me but I was always in rage. No one warned me on that one. Of course that was back in the 70's, when they finally diagnosed me as having Ileitis. It took them about seven years to find this out.

So far I've had horrible side effects most dangerous apparently with most meds I've been prescribed. Tomorrow I'm back on Entocort as we discovered a. never start someone on more than one meds they never had, and b. it turned out Loperamide almost put me back in the hospital.

It's tragic that once you find a med that works for you you have to stop having it because some greedy CEO wants his undeserved bonus. It's a shame the HCR is being messed with by you know who, and we suffer for it.

I would like to welcome you to the group as well, Eric! I'm sorry to hear what you have gone through. I, too, experienced a lot in my early 20s but wasn't diagnosed with CD until two months ago. Sorry to say that I can't offer much information due to learning myself; however, I do hope you find a comfortable place here to communicate with all of us.

Thank you all for your kind words! It is very helpful to me that my beautiful wife is an RN and many times hounds Dr.'s about twhat they think about different meds. libit I do have insurance now. Back in the mid 2000's I switched jobs and did not have insurance for 60 days and then of course the dreaded pre-existing thing always comes up. Also my GI doc says if we cant control my white blood count with the Humira he would try the cimzia. I am very fortunate to have good insurance now with the fire dept. I met my out of pocket in January which is great. Hopefully we can get things figured out with the next med. I see my doc next week so hopefully he can give me ideas on my joint pain. My feet and knees are def the worst. Do any you know any natural remedies for joint pain? Thank you again for your wonderfull kindness.

And Starshine......MOODY!!!! Doesn't even describe it!

Hi eric- sorry I'm a little late for the welcome wagon!

I was 21 when officially diagnosed. Sounds like you too have been on the classic Crohn's roller coaster! Thank you so much for your service as a firefighter, it seems like you guys have one of the most selfless jobs out there.

In addition to Crohn's, I also have rheumatoid arthritis (RA). I take a natural supplement called Boswellia. Initially I started taking it to manage all aspects of my Crohn's disease, and to keep my RA right where it belongs: in remission!

I've had fantastic success this this natural remedy, and the side effects are so minute (a barely noticeable sour stomach) that I usually forget about 'em.