what is the worst complication you have had/heard of with an ostomy

Dear all,
I've read your posts often since my small child was diagnosed with UC a year and 3 months ago. We have been exploring all options and she "failed" first line ASA drugs (they failed her) so we have an extremely difficult decision to make. She's been on two courses of pred and is probably going to have to go on a third one. In the mean time, we are VERY concerned about immunomodulators in a child so small (her immune system is not even properly developed yet according to her GI). We are very seriously considering surgery. In a small child the chances that it might be CD are higher than in an older child and regardless we would want to spare her many traumatic surgeries so would want to go for a temporary ileostomy and have her chose whether she wanted it reversed or not when she is older. We pray that this would allow her to get on with being an active child (which she was before this cursed disease came into our life). But, of course surgery is such a major step and we would be going against the advice of a few GIs to try further medical treatments.
My husband and I are trying to have the GIs refer us to a few surgeons for consults but in the mean time we are trying to find out what the worse case complications with an ostomy are and what life would most likely be like for her with one (as this is pretty elective at this stage, it puts a LOT of pressure on us).
I would really appreciate it if you could share the worst complications you have experienced or even know of. I know of the possibility of things moving through too fast is one and the resulting dehydration and possible malnutrition. Has anyone had this problem, and if so, how was/is it treated?
Also, blockages, adhesions, skin problems - anything else?
I've posted before about waking up at night to empty and it seemed many did this, but do you have to stop eating at an early hour to prevent a blow out? (We are Indian and Italian and eat pretty late).
Also, how many of you have dietary restrictions?
Thanks so much for your help.

Post Edited (killcolitis) : 10/11/2010 10:38:51 AM (GMT-6)

As Sue said, kids tend to bounce back from this (and other) surgeries easier and quicker than adults do. I had my surgery at 10 years of age and was in the family pool swimming a month later.

You will find some people prefer to stop eating around 6pm and others (like me) who just eat whenever we're hungry (which can often happen late at night for me). I sleep from approx 10.30pm through to about 7am without having to get up usually to empty my bag (it's normally to pee nowadays lol).

I have no dietary restrictions (and it shows!) and eat anything and everything, even the supposed 'no no' foods that some people will warn you about. Everyone is different as to what they can tolerate and what one person can't eat, others can eat without a problem. It's really a matter of trial and error. There are no universal rules that include everyone. However, you will find most ostomates can eat whatever they want after they've healed.

Children adapt a lot quicker than adults. I've never had a problem with dehydration although I don't drink anywhere near what people recommend ileostomates drink. Having said that, a temporary ileostomy is usually higher up in the small intestine and thus less fluid is absorbed overall than with a permanent ileostomy so it may be a little different for your child.

Good luck.

at such a young age, she wont remember anything different,my son thinks mine is cool, although he did ask me the other day if thats where he came out of, lol.
But as for complications, skin breakdown is somethign that can happen, that is fixed by getting the right system, blockages can happen, those can be fixed by drinking alot and sometimes surgery, but not that often. There are other things, of course, like any surgery, but its far less dangerous than years and years of drugs, in my opinion.
Dehydration is a problem, you just have to keep up with fluid intake, drink lots and lots of water!

killcolitis, I've been on azathioprine since 1996 and it did get me eight years of remission before I flared again and after becoming steroid dependent, a permanent illeostomy was considered my best course of action. In my case, the inflammation had gone but the scarring was what was causing me all the lingering trouble.
I don't envy you having to make this decision for your daughter but I will say that there are worse things in life than an illeostomy, having experienced some of them, and that how you approach this will help your daughter deal psychologically. I'm in my thirties but I had to tell my nearest and dearest that I needed them to be okay with this, I needed them to not make a huge deal out of it so that I could try and be calm about it. My mother is a lovely woman but she has inherited her own mother's dramatic gene and I needed her to just tone it down a little. ;-)

As regards complications, skin problems can often be caused by not having the right kind of appliance. It can take a while to find the right one and it's trial and error at the start. But that's where the stoma nurse comes in - they are a fantastic resource for practical information and they know what will help. Don't be afraid to use them.
I eat a more varied diet now than I did when I had my colon. I enjoy food more now because it's not the enemy anymore. In the past three years, I have camped, gone on long car journeys and walks and my quality of life has improved drastically. Don't underestimate just how good it can be psychologically to have the part of your body that was keeping you ill removed. Sometimes I eat late and have to get up to empty the bag. It depends on what I eat and in what quantities. I wake up automatically and the whole thing takes less than two minutes. Much quicker than when I had crohns and would spend all night in the bathroom. It becomes second nature.

If you're worried about explaining it to your daughter, you could say that it's just a different way of going to the bathroom and that it is normal for her and the rest of us with an ostomy to do it this way. Children are a lot more adaptable than people give them credit for and I know it's all right for me to say that but she's your daughter and you are naturally trying to save her from any hurt or bother. And this surgery is a big deal but it can be a stepping stone to much better things when you're dealing with these diseases.

Whatever you decide, the very best of luck to your daughter and I hope remission finds her sooner rather than later.

I bet your doc could introduce you to a young patient and their parents to get a visual on how the child has adapted and the parents could probably help to ease your mind, too! Most of the time doc's think at a level way above the "seeing is believing" that patients and parents need! Just ask or even call your local UOAA chapter for help.

The worst complication I had were abscesses...they were all easily drained and cared for but they were a bit of a set back...but I'm old (LOL) and had horrible fistulas and the abscesses were recurring throughout my struggles.