New here need some advice

Hey all, Im new here...kinda needing some answers or advice.  Heres my story....

I first found out I had crohns when I was 16 years old, after being sick for over 4 months...not being able to eat, throwing up constantly, horrible stomach pains my doctor decided that it wasnt me being "nervous" about starting highschool, I was sent to the hospital and had a colonoscopy and a week later had 16 inches of intestines removed. I was in the hospital for around 2 months recovering, put on steriods and all that stuff....

For 5 years afterwards I had no problems, no flare ups...and was on no medication

Just recently I had a huge flare up I ended up in the hospital for 3 weeks, lost 45 pounds...My doctor decided to put me on humira. I had my first 4 shots in a row in the hospital, and the next morning I woke up feeling like a completely different person, 100% perfect like Ive never felt in my life. I was sent home, and put on the humira every other week, and 100mg of pred.  My doctor started dropping me down from the pred 20mg a week (which seemed way too fast for me, turns out it was) When I got down to 20mg I started to get serious stomach cramps, and back pains that I couldnt stand, so he bumped me back up to 100mg of pred a day and instead of the humira every other week, he has me on it every week and gave me some pain meds. My GI has openly admitted me to me that Im the worst case that he and his partner has seen, and all he can do it try different things to help me, but basically I feel like Im being jerked around by him bumping me back up to 100mg of pred and humira every week because I started to flare at 20mg...the pred makes me feel so crappy, I eat everything in sight, I cant sleep at night from it, its effecting my job..and Im worried about the long term side effects of the humira with me only being 21. At this point he is saying if the humira doesnt kick in hes going to resort to surgery, which is fine if it comes down to it, but for some reason I just dont feel like hes doing the right things, hes talking about me going on disability, and he doesnt want me working...and it just seems crazy to me, I'm just really confused and stressed out and just feel like Im going to have a break down if this doesnt let up a little bit at least, anyone have any advice, or think my doctor is a nut case...or am I just over reacting from the stress? I'm just scared because I feel like my life is being turned upside down right when Its supposed to be the best time of my life.

Anyways, thanks for reading, comments and advice would be nice even if you think I'm crazy, maybe it will knock me back to reality

Melissa

Melissa, I'm so sorry for what you are going through. How tough to deal with all of this at such a young age! Here's my 2 cents - if you are not sure about what your doc is telling you then seek a 2nd opinion. It never hurts. Having a 2nd person look at your situation can offer a fresh perspective, even if that doc ends up agreeing with your doc.

As for the disability thing... don't freak out. It's not as crazy as it sounds. What your doctor is telling you is that your health situation is fragile enough that working is not good for you. Maybe you should conisder it. I know it's a hard pill to swallow, but maybe if you didn't have the stress of managing your disease AND working you might get some relief. Just a thought. Only you will know what's best for your situation.

100mg of pred is enough to make anyone feel like garbage! UGH! Pred is not the only medicine out there. You can tell him that you refuse to take it (after you wean down of course). Ask him if he would consider something different. Can he use Imuran or 6mp? Are there other drugs. Tell him that while you may be a severe case, certainly he can't manage you on steroids forever so you'd like to know what the long-term plan is. Ask some hard questions and find out what his answers are and if you aren't satisfied, it never hurts to seek a 2nd opinion.

Hang in there kiddo. There ARE better days ahead.

100mg is do-able. Some cancer patients do 100mg for a few days a month / fortnight as part of their chemo cycle. I think the dosage depends on why you're taking it, and for how long.

Melissa, it sounds as if you're having a horrible time there. I can sense from your writing that you're feeling confused and topsy-turvy, and please remember that it's probably the pred making you feel that way. Few (if any) people could think cogently on 100mg pred.

At your next appointment, it might be worth asking why you're not being prescribed a medication like Imuran, Methotrexate or 6mp and yes, a second opinion might help too. If you're the worst case your doctor has seen, then perhaps you could benefit from having the occasional consultation with a more senior and experienced doctor.

Welcome!

Ivy.

Hi Melissa! Welcome to HW! At the risk of sounding like a broken record GET A SECOND OPINION. I know you are probably feeling overwhelmed right now (as you should) and the pred is probably making it worse. But I have to say, if you that your doctor doesn't know what he's doing, then you need to find someone that does.

It also sounds like you have pretty severe CD, but on the other hand, if this is a doc who doesn't have many CD patients, it isn't that hard to look like the worst CD patient he's ever had. Did that make sense? AND if you doubt him, there is no way you will trust him with your care and that makes it more likely that you will be less compliant with your meds. Get a second opinion--It doesn't hurt anything and you may find someone who can actually help you find some relief.

Good luck.

Just wanted to say hello...............let us know how things are going...hope you start to feel a bit better soon.

shelley

Sorry, I'm a bit late on this. But I always try to do it..
Welcome to HealingWell, the best support around. I'm sorry you must be here.
Man, 100mg of Pred? I don't want to know what your side-effects are!

Sincerely,
Matthew