Is this all normal for Crohns/Colitis??

Hi.  My 17 yr old daughter started flaring at the end of Dec. Her flares are always bloody dir.  She was dx in 2003 with Crohns/Colitis. This is her 2nd flare since dx. Tried 40M Pred (didn't seem to help) Put her in the hospital for 4 days on IV steroids (didn't help).  Started Remicade in the hospital, seemed like a miracle drug the first week and then down hill the second week. Last weekend she was up every hour in the bathroom.  She had her 2nd Remicade two days ago.  Since then she is still up in the night about every 2 hours in the bathroom. Not always with a bowel movement but always blood/gas. Her sed rate a month ago was 10, in the hospital it was 35 and two days ago it was 45. She has had blood every day for two months.  Her tummy is also hurting alot and she was kind of nausous this a.m. Besides the Remicade she also takes Fish Oil, Nexium, Prednisone 30M, Multi Vitamin, Allegra.  My questions are:

Is this all normal for a flare up?

Is there still hope for the Remicade?

Is there other people out there who bleeds everyday for this long?

It is just really hard to see you child suffering and you cannot do anything about it and you don't know what it is going to take to finally get better.

 

Tabitha,

Thanks for your reply.  I will also post to the crohns board.  I just thought I would try this board first because it seems like her symptons are more like colitis.

I have never heard of anti-spasmatics.  Is it over the counter or by prescription?

Thanks, Robin

I bled almost every day for the first four years, and it's definitely no fun. Remicade sometimes takes a while to take effect; that's why they usually do the first three doses closer together. I'd say there's still hope, but if she doesn't see improvement by the fourth infusion it's probably time to explore other options. There are some drugs available for treating Crohn's that aren't yet approved for UC, so ask over there about what is available.

Welcome to HealingWell, by the way. I'm sorry your daughter is having to go through this.

when i last flared(about 7 weeks ago), I was up every 2 hours. I didn't sleep well for a a month, so it is quite normal for me during a flare.

I was on Remicade for months before I saw a big improvement. I think the reason was that the ulcer I had was soo bad, so even though it was healing on the Remicade, it was still open and causing problems. I probably would have given up on it but I had a colonoscopy right before I started it and then 3 months later, and my 1 inch deep ulcer was down to 1/4 inch! Eventually I started having more normal bms finally. The anti-spasmodic I take is Lomotil. Sometimes I am so grateful for it but I try not to use it too often. I do bleed a lot, it has gotten better since I have been taking Proctofoam but bleeding has always been a problem for me. Last blood test I had, I think my sed rate was 60? One thing I noticed is your daughter is taking fish oil. It's supposed to be great for inflammation, but I got more diarrhea while taking it. Has she tried not taking the fish oil to see if it helps? I hope she finds some relief. I was diagnosed when I was 15, it has been a long road so far and I hope your daughter has better results than I have. At least there are some better meds out now.