I'm all confused again!

[bcv513]

So I went back to the GI yesterday for a follow-up. I feel absolutely fine, so I was expecting to hear "You're doing great" and talk about coming off the steroids. Instead, she started talking about going up to the 6mp or Imuran step. She said I can't stay on the steroids for much longer and she doesn't think the Pentasa would be enough. I talked her into letting me stay on the steroids until my wedding and then weaning off.

Then this morning, I ate an english muffin with a little butter and had pain and diaherrea for the first time in weeks. Now I'm worried. How do I know the difference between a bad food choice and a flare? I really don't want to go up to the next step of medicine. But I also don't want to get back into a flare. She also started telling me about how pregnancy is more high risk and if the Crohn's isn't under control it can cause prematurity and low birth weight. I don't know what to do anymore

[greenscreen]

Those kind of appointments are the worst. I think it fine to take your time in thinking about it and getting a second or third opinion. I think you have to feel comfortable with the choice. 

I met recently someone that is doing great on just 6-mp. I currently take Imuran, Asacol and Remicade, and each step was really, really hard.

I hope you can enjoy your time before your wedding! 

[aimeedyan]

Honestly, I bet the pain and D were from the stress of the wedding + doctors visit. Remember our emotions are all in our digestive system and even people with normal bowels sometimes have pain and D when they're super stressed, emotional, upset, etc. Don't worry too much about that one incident.

She's right, you really can't stay on steroids longterm. Well, you could but typically people who do have far worse health issues than IBD (like, organ transplant). Longterm, they are a bad bad idea. As a doctor, she's concerned about a young adult being on steroids another month so I understand where she's coming from. However, I also know that you're terrified to rock the boat so close to your wedding...

If you've been on steroids this long, it makes me think you recently had a severe enough flare to merit its use for awhile so she's probably afraid that weaning off the steroid will kick you back into a flare. I know you don't want more drugs, but if 6mp keeps you in remission it's worth it - esp since another flare would mean another round of steroids.

I got lucky that my last GI was amazing and I trusted every word he said. We worked together beautifully. If he said I needed to take something, I was on board. But I've had other GIs that I didn't trust as willingly and found myself questioning their advice often. If you aren't completely comfortable with her advice, get another opinion (and you may like another GI better!). You've got a few weeks to think about it still but I really want to urge you to not continue with those steroids after your wedding. Work to find an alternative.

If you aren't pregnant, don't worry about what she told you right now. Sure you'll be higher risk but it's not unusual for people with Crohns to carry babies (esp since most are diagnosed in their 20s!) and you'll cross that bridge when you come to it. Focus on getting yourself weaned off the steroids and into a maintenance program first.

*hugs* I know you're stressed right now.

[bcv513]

Thank you all very much. I feel much better today. I think it was definitely stress, between the wedding and the doctor's appointment, and my dog ate grapes and I had to take her to an emergency vet. It was just a tough day! This morning I feel fine and very relieved.

I'm going to wait before deciding on possibly adding the 6mp or Imuran. I can stay on the steroid until I get back from my honeymoon, which is about another month. Thank you all for listening to my freak out!

[Deleted]

May 1, 2013 7:15:23 GMT -5 bcv513 said:

Thank you all very much. I feel much better today. I think it was definitely stress, between the wedding and the doctor's appointment, and my dog ate grapes and I had to take her to an emergency vet. It was just a tough day! This morning I feel fine and very relieved.

I'm going to wait before deciding on possibly adding the 6mp or Imuran. I can stay on the steroid until I get back from my honeymoon, which is about another month. Thank you all for listening to my freak out!

Oh, no! How is your dog doing?

I'm glad to see things are calming down for you. :] How are things going with your wedding planning?