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Ulcerative Colitis
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Posted 9/22/2012 11:52 AM (GMT 0)
Hi all. I have been reading the threads here for the last few days to try to gain perspective. My 11 year old daughter has now been diagnosed with indeterminate colitis. Before the endoscopy & colonoscopy doc thought crohn's, now leaning more to UC but not completely sure which except for she is severe. Been in hospital for over two weeks to give colon a rest with a no food diet & get blood to stop in stool along with the enjoyment of now steriod enima, and moved from prednisone to solumedrol. PICC line has been part of her since soon entering hospital 2+ weeks ago.

Being told of next steps of Remicade. Worried once she starts it she can't stop. How is quality of life with Remicade? Has anyone tried immunosupressives 1st before a biologic with success with quality of life? These decisions are much bigger than I thought we would have to deal with when first being admitted.
Posted 9/22/2012 12:19 PM (GMT 0)
Hi there! Sorry about your daughter, but she should be better in no time! I was on 6mp for 2-3 months, I found that the side effects were terrible and within 3 bottles of pills I had a flare. It worked great with steroids, but not on its own. One thing I hate was the hair loss. Being a teenager girl with thinning hair is hard so I'm glad I switched. I just started Remicade and have my second dose next week, but after about a week later I feel so much better. It sounds scary, and I had to make my own decision on it(my parents want to prepare me for when I'm 18) and it was hard, but I really think I made the right choice, and it sounds like there doing the top down approach with you, so sometime in the future you may be able to go to a immunodulator or 5asa. But good luck for now!
Posted 9/22/2012 4:05 PM (GMT 0)
Great to hear from another teenager. Tomorrow my daughter turns 12 and definitely thinks of herself as a teen. Glad to hear of the remicade works quickly. We are into week 3 of the hospital and won't be out until something starts to work.

How does the treatment feel when getting them?
Posted 9/22/2012 4:42 PM (GMT 0)
It's always difficult to hear about teenagers with this disease.  I feel fortunate that I wasn't diagnosed until 30. Remicade seems to have a pretty good sucess rate but I think prednisone does also.  Maybe give the prednisone more time.

I wish your daughter the best.  Mary

 

Posted 9/22/2012 6:10 PM (GMT 0)
Prednisone is contraindicated for children because it stunts growth, which is an especially important consideration for an 11 year old girl. Girls at this age are entering their growth spurts and steroids are not a good idea. In fact, the protocol she's now on, total parenteral nutrition, has the same success rate for inducing remission in children as does prednisone. I hope she is feeling better than when she entered the hospital!

I think most GIs agree that the biologic meds are the best treatment for Crohn's in children. I cannot speak about "indeterminate colitis," but from what I've seen and read, Remicade induces remission quickly and effectively and your daughter should be able to stay on it for a long time.
Posted 9/23/2012 1:59 PM (GMT 0)
Thanks for the positive thoughts. The prednisone hasn't done much of anything after 10 days. Not worth continuing if it won't help. Maybe it will work if she gets a flare up in the future, who knows. Really want to see remicade work tomorrow. Don't want to have the surgery talk.

At least we get a pass today to leave the hospital for a few hours to celebrate her birthday. Small steps...
Posted 9/23/2012 2:13 PM (GMT 0)
supportivemom, i'm sorry about your daughter. i didn't notice that prednisone affected me positively at all either, so i went on 6mp and remicade, too. maybe she could try just an immunosuppressant before the remicade? my doctor told me i needed both at the same time which i have later found out is not true. don't feel pressured to start remicade. it's a huge committment. the infusions were sometimes uncomfortable for me mainly because of the IV. it would burn and i'd have to have heat on my site during the whole 3.5 hours. the heat helped though.

also, tell your daughter happy birthday and that i'm not eating cake either! we share the same one- just turned 23 today.
Posted 9/23/2012 2:17 PM (GMT 0)
Supporitivemom,
I'm sorry about your daughter's diagnosis. I have a little one with UC too. If the pred does not work after 7 days the pediatric protocol is to assume it's not going to work (this is IV pred). In that case the options are colectomy or remicade. In your daughter's case, with the IC dx, surgery will be the absolute last resort (it usually is but some people do refuse remicade in favour of surgery in the case of UC - we were given that option by our first GI). As for TPN, it might actually induce remission IF she has crohn's. It does not induce remission in UC. It is less likely to be effective in inducing remission in colonic disease and more successful with upper GI/small bowel crohn's but it sounds like she needs the nutrition regardless.
I hope she responds quickly to remicade. There are many treatment options out there from diet to supplements and many others and I'm sure someone will tell you about those but for the moment she needs to be stabilized. Good luck and keep us posted.
Posted 9/23/2012 2:57 PM (GMT 0)
Love the name kill colitis! How old was your daughter when diagnosed?

Remicade starts tomorrow. Doctor giving benadryl & tylenol right before to help deal with side effects while taking it. Hope it helps.

Been on TPN since the 7th. If it didn't help remission now I doubt it will. Would be wonderful!

Thanks for helping me keep perspective all. No cake today but can't wait until she can have a post celebration. Hope you soon you can have cake too banana girl.
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