New here.. Look for support

[kristal79]

Hello, I am new to here!! My niece who is literally like my daughter has been very ill for a year and has just been told she has UC. The pain she is in is so bad she is continually taken Tramadol!!! I am looking for any other teenagers that have this and can help her understand. She feels so low as the pain is not easing.. Any support from other would be great. I want her to know that she is not alone..

Thanks

Worried Aunty

 

[mayas_mom]

Hey there! I'm new here as well

My 13 year old daughter was just diagnosed with Crohn's in December so she's been on prednisone which has the terrible side effects. She's been having a lot of pain as well and but the doctor will only tell her to take acetaminophen which doesn't help at all.

This forum is a great source of IBD information and support!
Sending you both hugs

 

[my little penguin]

Welcome
What else do they have her on other than tramadol
That only treats pain but not the actual disease .
Is she on prednisone ?
Once she get the right med the inflammation will go down and life will get back to normal so to speak
Getting the right meds is key
Tramadol does nothing for UC or crohns

remission takes time
Think months not days.
It took a long time for the damage to be done and takes a long time for it to heal

Even with the right meds
Good luck

 

[CarolinAlaska]

I'm sorry your niece is suffering. I hope the docs find the right combo to help her soon.

 

[pdx]

kristal79 and mayas_mom: Sorry that you have to be here, but welcome. It's so hard when your child is first diagnosed, but it does get better when you get the right treatment (although it takes a while for most of these treatments to start working).

My daughter was in a lot of pain too when first diagnosed, and the only thing that finally gave her relief was EEN, where she got almost all her calories from a liquid formula for about 10 weeks. She was really resistant to trying it at first, but it gave her relief within days, and then she was on board with it. EEN doesn't just relieve pain--it also helps with intestinal healing, so it might be something worth thinking about.

kristal79--EEN is used more with Crohn's disease, rather than UC, but there are people on this forum who found it helped with colonic disease too.

Steroids and EEN are just initial treatments, since they can't be continued indefinitely. Your kids should be starting a long-term treatment soon too. Have your doctors talked to you about what they are considering?

I hope that both of your kids are feeling better soon.

 

[mayas_mom]

Thank you pdx
What is EEN? I know EN is enteral nutrition but what's the other E?
My daughter actually wants EN via NG tube, shes just been on steroids and Imuran. Her first remicade infusion is Tuesday.

 

[Maya142]

Exclusive Enteral Nutrition (formula only - no food). My daughter has used an NG tube. She inserted the tube every night and pulled it out in the morning before school. It was much less intimidating than we expected it to be.

The first night was rough - she was very uncomfortable, but by the second night she felt better and she got really good at inserting it by herself within a week or two. They are taught to insert it while drinking something, so that they don't gag. At first her nose and throat might be a little sore, but it does get better very quickly. Alternatively, some kids choose to just leave the tube in for a certain number of weeks so that they don't have to deal with inserting it.

Good luck with Remicade! The infusions are quite easy - just make sure she takes something to do!

 

[my little penguin]

Ds did EEN twice but never had a tube
He just drank peptamen Jr orally for 9 weeks the first time
It stopped his vomiting .


Good luck