I just can't quite seem to win

Not really Crohn's related, but this whole pancreatitis this is a mess. I was sent home Monday with the feeding tube. The idea was that it would let my pancreas get lots of rest (4-6 weeks) and then we would very slowly reintroduce food.

Well, after 2 days at home my stomach started hurting again. Badly. I called my GI's office because they have an on-call doctor every night. He called me back and told me I was just having an anxiety attack, to calm down, and go to bed. Then he just hung up (he wasn't very nice). I'm a bit sensitive, so I told myself to just get some sleep. After a long night I finally decided that it wasn't just from anxiety and went to the ER. Turned out to be good because my pancreas levels were high, so it was all inflamed. BUT IT SHOULDN'T HAVE BEEN! Isn't that the whole POINT of the blasted feeding tube?

So here I am in the hospital while they run more tests to figure it out, It's not autoimmunal, it's not my gall bladder (they removed that), it didn't happen because of eating (I wasn't even drinking water because I'm not supposed to), and this definitely wasn't caused by alcohol (I don't drink).

Anyway, I don't know if anyone has dealt with pancreas problems or not. I guess I just needed to mostly vent. The GI and other doctors are "baffled" by what's causing my pancreas to get wacked out so much, especially since the tube goes into my small intestine and bypasses the stomach entirely. They did an xray to make sure it hadn't been displaced, but it was still nicely where it was supposed to be.

I've also been choking on it a bit, so we're going to see if I have any strictures in my esophagus (I've had to be dilated a few times in the past).

GAH! My body is just falling apart! This has been so hard. I just got married in December, we moved to Utah two months ago for his senior year of college and I'm supposed to start teaching next week (9th grade math). This is supposed to be a happy time, being in the honeymoon stage of life and just enjoying one another and friends and family. We had just gotten my Crohn's under control with Remicade and were going to start trying to get pregnant. I just feel like it's not fair to some extent. Not fair to my husband (who has been so wonderful and supportive), and not fair to me. I want to be able to be a supportive wife who can cook dinner for him and do my teaching and I can't.

Sorry. Just needed to vent.

I think you can get pancreatitis form Imuran and Remicade. Have they stopped those meds? Sorry you are going through all of this, but I'm glad you trusted yourself and went to the hospital. That on-call doc seems like a jerk!

Thanks for listening, guys. I appreciate it so much. The doctors here at the hospital have been really nice and have told me I did the right thing by coming in and that my pain is real.

I stopped Imuran back in May when I first started the attack. I hadn't heard anything about Remicade causing pancreatitis, so I'll have to ask. I hope not, though, because it's the only thing we've found to keep me in remission. They tell me that the dilaudid they're giving me for pain can cause lipase levels to go up, though.

I don't have any advice just to say I feel your pain, dear. I am on day 12 in the hospital and still not improved to where I want to be. Like you, I just started Remicade and am on 6mp. I've heard pancreatitis is awful and I feel badly for you.

Can you get a leave of absence at work so you can start teaching when you are better? That must be very difficult to feel that you're letting them down at work and I know you must be eager to start your new career. However, when you look long term it will be so beneficial to take the time now to heal and get well before jumping back into the real world. I myself am going to be asking for a leave of absence when I get out of the hospital. I just feel I need more time to rest, eat well, and heal. You also need to forgive yourself. You are doing the best you can given the circumstances you are in. If you are so ill that you cannot eat, you do the best you can every day to take care of yourself first, then give your love and attention to your dear husband. Even if he has to cook his own meals, you can still be a wonderful, supportive wife and friend which should mean more than those things you can or cannot do at this moment in life.

Take care of yourself.