HealingWell
Search Close Search
☰

Daughter with abcess/fistula

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/10/2012 12:25 AM (GMT 0)
My 6 year old had Ulcerative Colitis, diagnosed at age 3, s/p colectomy and J-pouch surgery. She's been on allinia for a year or so but now we can no longer get the medicine and she has been feeling pretty bad lately. We thought she was having a rash on her bottom from wiping so much from going to the bathroom so much. But she has been in so much pain, unable to really walk from it and it turns out now it is an abcess and anal fistula. I have been reading the posts on here about fistulas and the drains and long term healing process and complications. It just sounds awful! I am so sad she will have to go through this on top of everything else she's been through. And the fact that it could keep recurring sounds terrible too. Does anyone have any experiences with fistulas that were not as complicated/healed easily? Or any words of advice? Thanks in advance!
Posted 4/10/2012 2:58 AM (GMT 0)
So sorry to hear that she's suffering so much.

I don't have a lot of experience with fistulas, but I do have a lot of anal issues. I find Cortate cream helpful, and you might want to inquire about some antibiotics. A good topical antibiotic with steroid (Fucidin H) might also help.
Plenty of warm sitz baths with some plain bath salts.

Is she seeing a pediatric gastroenterologist? Ask about cholestyramine (Questran) to bulk up her stool a bit.

Have you tried some diet changes? Sometimes when surgery is done, diet changes are required, like dairy free/gluten free, etc. I know it's tough sometimes with kids when it comes to diet, all you can do is your best.

It's so awful when the little ones suffer with IBD. I hope and pray she will get better soon. Hugs to you both!
Posted 4/10/2012 3:06 AM (GMT 0)
Thank you! She is the pickiest eater ever. She pretty much will only eat 3 or 4 things. She has a G-tube and gets extra nutrition that way, but I can't imagine trying to limit her diet any more. I'll ask about the antibiotic, is it a cream that you apply down there? She does see a pedi GI, but we're kind of in a "nothing else can be done for her" state. That she just has to live with no energy, fevers, feeling sleepy and tired all the time and loose stools. Which is heartbreaking to watch her go through and not live a normal life!
Posted 4/10/2012 3:43 AM (GMT 0)
First, why can she not get the alinia anymore?
Second, why can they not help her? Has her dx been changed officially to CD? If so, they should be treating it as such, meaning they should be putting her on the IBD meds again ie. remicade to heal the fistulas. There's also the option of a permanent ostomy - i know many parents don't want that for their child but it seems like she's suffered a lot and that would be one way of doing it. Has the GI suggested either or talked to both with you. I think you need to get a second or third opinion - maybe from someplace like boston children's or CHOP. I would not accept that there was nothing that can be done for her at the age of six. sounds ridiculous ( and I don't mean to undermine what they have already tried/done. I'm sure she's been through the ringer, poor child). I hope she's better soon.
✚ New Topic ✚ Reply