I have an 10 year old daughter who had an illeostomy operation when she was 8. She still has part of her rectum and has been having problems the last few weeks with bleeding and pain. The consultant has advised me that it is proctisis and she is using Pentasa suppositories which is making no difference so far.
I wondered if anyone else had experienced this and could offer some advice?
Does anyone also know if there is a support group for children in the Edinburgh area?
jellybean,
Many of us have ileostomies with the rectum intact. It is normal to have some blood and mucus discharge but it shouldn't be painful. More like having the urge to have a bowel movement. Was the surgery due to Crohn's, UC or something else? I would guess UC because Pentasa is used for UC flare ups.
If the Pentasa doesn't seem to be helping, perhaps it's time for a second opinion. This may of course require some invasive procedures on your daughter, which I wouldn't wish on anyone. But I don't know how referals work in the UK.
I couldn't find any children's support group online, but perhaps one of the other members on here from the UK can make a suggestion. I did however, find the site below for ostomates in the UK. I hope it helps.
http://www.colostomyuk.org/support-groups/
Bain
First off, this is a pretty cool site with 39,944 members.
But, it's not all about ostomy. We talk about everything.
Many come here for advice, others find lasting friendships, and some have even found love.
🛑 Privacy is very important - your profile is not visible to the outside world.
39,944 members
Thank you for your reply Bain,
She ended up in hospital again last week for a colonoscopy and is now on new steriod medication to see if the inflamation could be reduced.
I shall look into the link you sent me and hopefully I can find some support.
Joanne x
hi there . i know this post a bit old... but it caught my attention b/c i too have an ilio permanet and still have rectum attached which continues to bleed. the bleeding is from crhons. and they thought removal of colon got it all.. but it didnt. maybe it traveled.. and now has landed in rectum.. almost 3 yrs of bleeding down there. i was on suppositiries.. but they are limited... in that area....inside of rectum... am now on uceris... a foam injected steroid.. i was gunna suggest it.... but think your daughter is on it now.. i dont believe blood belongs coming out of rectum.. its not normal for bright red blood. mucus sure.. but blood.. no.. i dont buy it.. not after 3 years. so the last option is removal of rectum... if meds dont work.. my doctor say the foam is the last resort.. nothing else.. well there was a liquid but i cant hold that.. in the meantine time i have leaks down there which have been controlled. its still a serious matter gone unfinished. being that young and having this issue really is a downer... its likely she still has IBD in whatever is left of her . its sometimes referred to as a stump.. i have about 6 inches left.. they were hoping to reattached but its no win no way for me with IBD in rectum.. as it will travel.. its very hard to get rid of IBD... some folks are lucky.. then there's folks like me.
u get the best for her. seek out all options and please follow up here. If I can be of any assistance. let me know. ---Warrior.