Hi all. My 2 1/2 year old daughter had a complete colectomy for UC and now has an ileostomy. Reversal may be an option for the future but right now her rectal stump is bleeding and extremely painful. My wife and I were surprised to find the bleeding didn't stop from her anus and the pains as bad as ever (7 months post-op). Is this common and what can we do about it? She's currently on Salofalk suppositories.

I am so sorry for your childs and your suffering. Have you posted on www.ostomates.org
there may be more help there for you
Jan will surely be along to shed some light and some hope your way.
My sister-in-law's, sister-in-law had a baby come home from the hospital with an ostomy at 5 days old. I always said I could never imagine how difficult that had to be.
Have faith.

If the Salofalk suppositories are not helping, you may need to add or switch to hydrocortisone suppositories, enemas, or Cortifoam enemas. It is fairly common for the inflammation to persist even after colectomy and ileostomy. I am not sure what the minimum age is for the j-pouch, but I trust that you have been discussing this with her surgeon. Since she is so young, you have to be very careful regarding dosing when using medications to treat her pain and rectal spasms. In an adult, B&O suppositories (belladonna and opium) could be used. I don't know what the pediatric equivalent would be. Please stay in frequent contact with her doctors until you are satisfied with her care and monitoring. Doctors assume everything is OK unless you tell them it is not.

I am so sorry you are having to deal with this, especially your young daughter, who probably is very ill equipped to understand all that is happening to her.

Jan

Thanks everyone. My daughter is in a lot of pain when she passes blood and the doctor has just prescribed Anusol(?) suppositories. The difficulty is that as soon as she gets her suppository she pushes it out, in extreme pain of course. Corti-foam is not an option because it's too painful trying to insert the applicator. One other thing...it seems like there is tissue coming out with her movements. Does this seem right?

Not sure about the tissue, maybe mucous?
What part of Canada are you in? Do you have a pediatric GI? What were the surgeons credentials? Has he/she ever done j pouches on toddlers or small children? Pediatric colorectal surgeon? These are questions I would ask if I was in your position. I do not understand Canada's health care system but I would hope compassion takes over rather than policy.

Sounds like she really needs some better control over her pain and spasms. Is it possible she has undiagnosed fissures (tiny cuts in the anal canal)? This would make bowel movements and suppositories painful. Maybe some topical anesthetic when you insert the suppositories would help. Are these Anusol-HC (with hydrocortisone)?

Other topical barrier creams might be helpful too, such as Ilex or Dermawheat for serious problems, or zinc oxide or similar for less serious.

The tissue is probably mucous.

Jan

I'm thinking it sounds like active UC in the rectal stump. I had it too- after my colon was removed. It had tissue and blood too. The suppositories did help me, but ultimately, it only really went away when they formed my j-pouch. It was quite painful while I had it.

But! If you think she may ever be able to get a j-pouch, do NOT get the rectum removed if you can help it. My GI Dr. at Cleveland Clinic said that if you remove the rectum before a j-pouch is constructed, the whole thing scars up pretty badly and construction of a j-pouch becomes much more difficult. So if you can it is best to do both at once (removal and j-pouch construction).

During a procedure, one thing my surgeon did was apply lidocane cream (EMLA) to the area. It sure numbed things up! Man, I felt better for hours. I wonder if this is an option for a 2 year old? I think it might be, as they use lidocane cream in the pediatric blood lab to numb needle sites. Maybe they could send a little home with her?

I know it must be so hard with a little one! My heart really goes out to her. I hope it all works out, and I am sending you both all sorts of good thoughts! Please keep us posted!

Our daughter had her colectomy at 26 mths old. The surgeon did it laparoscopically and did a wonderful job. Initially the surgeon suggested a j-pouch 3 mths post-op but ultimately decided, after speaking with colleagues, she diecided to wait until late pre-pubescence to exclude Chrohns. We are okay with waiting in hopes that we can get a handle on her UC in her stump while we wait for better treatments and maybe even a cure. That way maybe when they hook her up the remaining stump will absorb some fluids.

I am sending prayers as I type,I can't even begin to imagine. God bless Ed

I don't have any words of wisdom either but just wanted to add my best wishes that your little girl gets some acceptable relief very soon.

Take care and keep us posted.

Shell

Hi--I have a four year old who had a colectomy due to UC. He has had an ileostomy for about 17 months now. His reversal has been put off several times now because of suspected Crohn's and a couple of seperate issues.

He was started on cortifoam about 2 weeks post op to keep his rectum healthy until surgery. We started at twice daily and then once. At one point it became impossible to do them because he said it hurt too much. He was scoped and they discovered a "foreign body" in his rectum that the lab could not identify (not stool, tissue etc..)Doc thought it was an old suppository even though i kept telling him we had not used any. We were told to continue cortifoam. Low and behold the same thing happened a couple of weeks ago and now we know it was the foam. I have been told they have never seen this happen. I am only telling you this long story because my son was fine with doing enemas until this and then refused every bribe we could offer because it hurt so much. Has your daughter had a scope to look around? Hope she can find relief with the new suppositories. We are currently looking for something as well after he cried all night from the rowasa.

Hi
I had my surgery in Feb of this year. They could not do the jpouch at that time, so they left my rectum to prevent scar tissue so a future jpouch can be created. I have to take a suppository twice each day due to my continued bleeding from my rectum and pain. The suppositories are working okay so far to slow the bleeding down. I'm guessing I will have off and on flares until my rectum is removed, mainly it has been continuous. I hope they can find something for your daughter soon. Poor baby! Prayers and thoughts to your little one!

To all of you who have children going through this, my heart goes out to you.

Hi everyone. Thanks for the information and well wishes..My daughter was in the hospital for most of April so I haven't been able to respond. She caught a stomach virus and had to have a central line put in to keep her hydrated. She lost 20% of her bodyweight in water and was requiring 300+ mls

per hour of fluids, She had TPN and didn't eat for 2 weeks. We are home now but she is still bleeding a lot from her stump, with pain. She is now on Salofalk enemas because they did a scope and saw acute inflammation higher up. The enemas don't seem to be making any difference though.