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New here, but not to Crohn's

I am 23 years old and was diagnosed with Crohn's at the age of 11. It started with joint pain and the doctor thought I had JRA. After months of hardly being able to eat and losing a significant amount of weigh, my mom got fed up and took me to the ER where they were pretty sure I had Crohn's. The colonoscopy I had later confirmed it. Doctor started me on Remicade and this caused me to have horrible flare ups and 2 hospital stays. I also had an abscessed fistula which required surgery.

Fast forward to my teen years and I was in remission and the best I ever felt. The medication combo for me was 6mp and Pentasa. I also took Iron pills and a multivitamin. Everything was great and I never once had any problems or symptoms.

Then when I was 18 I moved out of state and never set up an appointment for a new GI. I was only on 6mp and stopped taking it when the prescription ran out. Dumb move. I didn't start having problems again until I was 19. Occasional stomach cramping and frequent bathroom trips. Things really became worse after I turned 20. My husband insisted I go see a doctor and they set me up on Entocort, 6mp, Pentasa, prednisone. All of these did nothing except for the prednisone. At one point I was taking about 20 pills a day. Had little to no energy and was visiting my good friend the toilet 18/20 times a day. I ended up switching GI doctor's because I felt he didn't listen to me.

After the switch my new GI put me on 6mp and prednisone, which became just 6mp after weaning off the steroids. I still felt horrible and couldn't function whatsoever. I had every side effects for that medication and my doc immediately took me off of it. I had to have a blood transfusion in May 2012.

Finally she talked about starting Humira. I got approved through Abbott so I wouldn't have to pay anything for a year. I was supposed to start that July 2012 but found out I was pregnant. Oddly enough the whole time I was pregnant I didn't have any problems. 3 weeks after having my baby I started having a flare up. I'm currently only on 20mg of prednisone and I'm waiting to start Humira again. I recently just got approved by the company again so I won't have to pay for it for a year. Extremely expensive otherwise.

I'm still going to the bathroom several times a day and have stomach pains. I am able to eat small meals. This isn't the worse it's been but I want to feel normal again, especially with having to take care of 3 kids. I'm really thankful that my husband is understanding of this even though I know it frustrates him.

I'm sorry this is so long. Just looking for support from my fellow Crohnies!
 

nogutsnoglory

Moderator
Welcome to the forum Casey. I'm hoping Humira will be the answer for you to feel better. When will you be starting that? Will you begin tapering off the steroid?

You aren't the first to say they flared after pregnancy. I wonder if the body is shocked by certain events which can trigger flares.
 
Thank you. I'm waiting to hear back from my GI's office since it's being shipped there. Hopefully within the next couple of weeks. I do know she wants to eventually get me off the prednisone. I can't wait to get off it, but it is making me feel ok at the moment. Pretty much a catch-22.
 
Pred is a wonderful drug, it's a shame it comes with so many potential side effects and can't be used more long term. But if you didn't respond to 6mp then Humira could well be the way forward.

I was sorry to hear you flared so soon after giving birth! It must have been really difficult dealing with that when all you want to do is spend time with your baby!

I hope you feel better soon.
 
Thank you, Pointy_ears. I've dealt with this for a long time and I'm ready to feel better again. Humira is kind of my last hope.
 
Even still 3 weeks after having your baby you should be doing midnight feeds and relishing the visits from relatives you haven't seen in years not rocking up to the hospital everyday!

There are some other options if Humira doesn't work that are in a similar vein, I just hope it leaves you healthy enough that you can enjoy being with your baby and family!
 
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