Crohn's

[cleo]

crohn's

My 14 year old daughter was diagnosed with Crohns in February this year, we have been struggling all year, she comes good for a while but then goes down hill again, she has peri-annal crohns very severe, at this stage the crohns all through her gut and bowel seems to be under control, but she is on the toilet all day due to inflammation, have no idea what to do?

 

[Astra]

Hiya Cleo
and welcome

I've moved you to the Parents of Kids with IBD, there are many parents in there who will be able to advise and support you
lotsa luv
Joan xxx

 

[Dexky]

Welcome Cleo! I'm not sure I understand. You say crohns is under control but she is on the toilet due to inflammation. Is anal inflammation causing her to feel like she needs to go all the time? I can be a little slow!

What meds is she on?

 

[cleo]

Hi There, Yes she has had annal inflammation and now has a stricture, we have just come home from hospital, her colonoscopy showed that the crohns is under control but the stricture is quite bad. She cant put on weight and the doctors are finding this hard to understand, but when she is stuck on the toilet for hours on end she does not feel like eating. We go back for more tests in November. Cheers Cleo

 

[cleo]

Hi Cleo and :welcome:

I'm so sorry to hear about your daughter...:hug:...my daughter was also diagnosed at 14.

What medications is she taking?

What are her symptoms?

I hope you stay around cause this is a great place for support and info. Please keep us posted hun. Good luck and welcome aboard!

Dusty. xxx

Hi there, she is on Immuran 100mg, prednisolone 5 mg every second day, Omoprozole, and two antibiotics, she has had pretty bad annal crohns, the crohns right through her body is under control now but right down the bottom she has a stricture and inflammation which is causing her to get stuck on the toilet, she is struggling to deal with it and really wants to put on weight but cant. We got out of hospital yesturday, its been quite hard. She had a dilatation to try and help stricture, and I have started her on metamucil to help with regularity etc, cheers Cleo

 

[Sascot]

Hi cleo, sorry to hear about you problems. Whenever I go onto this site I'm amazed by the difference in treatments. Scotland seems to be the only place that has enteral nutrition as it's standard first call when it comes to treating children with Crohns. It has no side effects as far as I understand. If your daughter is dealing with inflammation surely it would be beneficial to give her bowel a rest for the 8 weeks on something like Modulin which has an anti-inflammatory in it as well. If she was on a liquid diet she might not need to spend so long on the toilet and it would be softer to "get out". Hope she gets better.