Hi Everyone,
This is actually my first post here. My now four year old son had a total colectomy 12/06 for UC. Since that time his diagnosis has changed to IC. He was started on cortifoam twice daily about 2 weeks post op and eventually to just once daily. He has been scoped twice since surgery. Each time a “foreign body” was found in his rectum and only identified by the lab as “debris”. We are pretty sure it was the foam gelling in his rectum. It looked just like white play dough. Obviously we stopped the foam. For the first time since surgery he started passing “stuff” from his rectum. Mucous, brownish stuff and occasionally frank blood. He is also complaining of some urgency and pain intermittently. We tried rowasa and he literally cried all night long. Now we are using colocort enemas and it is a nightly war to try to get him to lie down and do them. It more times than not has ended with no enema being done b/c I cannot force him. At four he cannot really understand the long term ramifications of not doing them. His disease was very severe..steroid dependant, failed 6-MP, MTX and remicade. My question now is does anyone know of any alternatives for topical meds? I am thinking suppositories and have found that there is a hydrocortisone one. Also canasa. What have you guys found to have worked. Has anyone had any problems with the suppositories being retained in rectum and not melting? I am at my wits end right now and not sure what to do next. I know the topical therapy works on his rectal stump b/c until now his rectum has looked amazingly well. We are ready for his next surgery but need to get this taken care of. Help anyone??
Thanks,
Laura

Hi Laura!

First I want to say how incredibly strong you are. I have a 4-year-old son and I'm always on the lookout for IBD signs since he has it on my side (me) and my husband's side (his sister). I can only imagine how hard it is dealing with a 4-year-old who can't fully understand what's going on.

I use Canasa suppositories and I would bet that you'll have much better success with them. I had a lot of issues with pain and pressure but found that the Canasa weren't bad at all. They seem to melt very slowly because I didn't have urgency to evacuate it once it was in and can easily last for hours sleeping. In fact, once it's in, I can't even tell.

Good luck and please know you can come here any time for advice and even just for support with people who understand.

Erin

Erin,

Thank you so much for the reply. It's crazy what we have been through with our son, how much he has endured and yet we are stuck on this? I got canasa yesterday and he still just could not relax enough to do it. I was able to get in while he slept though. He pushed it right out the first time but the second time retained it all night.
I'm glad too hear that you have had success with this medication. Hopefully my little one will too.

Thanks again,
Laura