• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

3 yrs old ulcerative colitis update

O

ohgeejen

Hi. I'm finally back. I haven't updated for months now. My other post was "my 2 yrs old with pancolitis." Something like that.

Update as of today.... since my daughter who is now 3 been diagnosed for 1 yr, she had flare ups almost every 2-3 months.

Today, 3/29-16, she is back in the hospital because her bleeding has worsen. I have changed like 10 diapers within 1 day, 3 days ago all bloody. I had it & I brought her to ER.

Anyway. Doc said her meds are not working for her. Shes currently sufadzalizine, maximum, & folic acid.

Her doc said the meds are not working. Tomorrow they are going to scope her inside to see how bad it is. Her inflammation level is 14,000. K was told its completely off the chart. Very flared up.

Doctors discuss with me about new meds such as.... Omg I can't tbink of it on top of my head. Something that is an infusion drip? Every 2-3 weeks?

Another thing is surgery? Removing the colon but she will have a tiny bag to carry around her right waist with a tube inserted inside her for about 3 months after the surgery. Afterward it is taken out. The chances of the bleeding coming back is pretty good. But the thing is my daughters infection is outside the colon wall. I'm having 2nd doubts now.

I'll have to wait til tomorrow to see how the scope goes. Right now she's on no iv & taking her meds that she takes @ home. She's still very active.
 
Maya142

Maya142

Moderator
Staff member
My daughter did great on Remicade. It was very easy - definitely her favorite medication. If you do the infusions at a Children's hospital, the nurses really fuss over the kids. She loved the chance to miss school, nap and watch TV. They usually have toys for little kids to play with (but take something to entertain her, just in case).

My daughter liked that it was just one poke, every so often. Most kids are given infusions every 6-8 weeks (after the loading doses) but it can be as often as every 4 weeks. The other nice thing about Remicade is that the dose is calculated based on weight, which works well for growing kids. You have a lot more flexibility that way.

My daughter was put on Remicade and Methotrexate after being diagnosed and within 8 months, her scopes showed healing. Her colon looked "beautiful" -- all the little white ulcers were gone! Her small bowel still showed mild inflammation, but much better.

Sometimes Remicade takes months to kick in and other times, kids see a difference within days or even hours. It really depends. My girls both had no side effects with it, except some tiredness after the infusions.

It sounds like your daughter has a lot of inflammation and they really need to get it under control. I really hope Remicade works if they choose to try it before surgery.

Check out the parents forum - there are some parents of very young kiddos there.

Good luck!
 
C

Christi

Im sorry for what you are going through and i do hope they get the best solution for her , i wish you all the best
 
You must log in or register to reply here.
Top