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So confused and overwhelmed

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Ulcerative Colitis
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Posted 8/17/2007 8:13 AM (GMT -8)
OK, I give up. I hate this disease. It makes no sense and it's so inconsistent and unpredictable.  My 17 year old son started Remicade in May and was doing amazing. He had his 4th infusion a couple weeks ago and it did nothing. It's as if they forgot to put the medicine in the IV.  He's having 10-12 bms a day and there's all the symptoms of a flare.  He has a doctor's appt on Monday, but I'm afraid they're just going to put him on Prednisone again (which he REALLY DOESN'T WANT). Because this disease has turned me into a rather pesimistic person, I take this to mean the Remicade isn't going to work. So what's next?  I know he's totally freaked out about surgery and what if you have the surgery and something comes along down the road. He's only 17.

I just don't understand why NOTHING is working for this poor child and he just wants to be able to be a normal kid.

Posted 8/17/2007 8:30 AM (GMT -8)
Surgery is not a bad option if your medical choices have run out and it's a preferred option (in my opinion) than starting the cycle of prednisone again. No one can predict the future on one's health but over 95% of those who have opted for j-pouch surgery are very satisfied with the results. Is it perfect? No, but for me it's better than living on meds, not being able to keep commitments, and living with an unpredictable disease. Surgery will allow your son to be as normal as possible. You can visit www.j-pouch.org and visit with lots of teens who made this decision. They can share their experiences with you and your son. I am so sorry young people have to go through this, it's not fair.

Sue
Posted 8/17/2007 10:49 AM (GMT -8)

 I'm new here, but I have had pancolitis since 5/05.  I wanted to respond to your message about your son.  I am also on Remicade.  It has always worked well for me.  Then a couple of months ago the treatment just didn't work - I mean NOTHING.  I have my infusions done at a Rheumatologist (sp) office due to insurance, and I told her and my GI doctor about it not working.  They both said that it is VERY common for some reason for Remicade to not work one treatment and the next treatment to be fine.  And that is exactly what happened to me - my next treatment went well - in fact I go in next week for another.  So try not to panic just yet - I would give it another try.

34 years old
Remicade
Aziothioprine
Zantac
Prilosec

Posted 8/17/2007 11:04 AM (GMT -8)
I believe they are beginning to use Humira in some patients if Remicade stops working, because you are less likely to develop antibodies to it. There are still still other options I'm sure, if he's not ready for surgery and he hasn't tried everything yet, then I would hold out on that as the last resort. That's my opinion though. I'm 22 and I know I personally am not ready for surgery. I feel just like you said- what if I go through with it and then they develop a new wonderful drug that could have helped me immensely and I wouldn't have had to have surgery?

It's frustrating. I'm sorry you and your son have to deal with this :(
Posted 8/17/2007 11:36 AM (GMT -8)
Good luck Lew -- let's hope the next treatment works and helps. It is so especially unfair for young kids to have this. I know how you feel - it is so tough to watch someone go through this and as much as you want to help there is so little that can be done to help.

The surgery route I know sounds scary but there are some great people here as you know sharing their honest insight. It has definitely given us information that we are considering if this keeps going on with no relief in sight. When it becomes the right decision to make I'm sure each individual reaches that understanding based on nothing working anymore, tired of all the meds, side effects or maybe even a medical necessity. Surgery was something we never even wanted to hear about actually until we read some very personal honest posts that gave us a better understanding.

May that not have to be something your son has to deal with. I pray he gets into a remission and can keep it that way for a long time.
Posted 8/18/2007 8:29 AM (GMT -8)
Thanks for the words of encouragement. You guys always make me feel more hopeful. It's hard to discuss this with people that aren't going through it because they just don't get it at all.  Doctor's appt on Monday. We'll see what he says.

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