I did a post about our problems with my daughter's stoma on the parent board. Here is a link: http://j-pouch.org/eve/forums/a/tpc/f/5651071921/m/8671...171019592#6171019592
Although things have been much better.... she still gets leaks - up to once to 3 times in a day. At least its not every hour like it was at first. Normally it just gets under the seal but not past the outer tape. School is about to start - the first week of Sept. She is a Senior in high school. Her 3rd surgery is Sept 17th. She really really wants to go to school. I am worried. The abscess that broke through her skin next to her stoma will not heal. The Eakin seal ... because of where the extra "hole" is (beside and almost under her stoma - oooh and her stoma is pointing downwards)... sloughs off which is why I believe she gets leaks. The surgeon said the other surgery is too close to do anything about it if there is no infection. He did say we must keep the area as free of fecal matter as possible... which is about impossible. The ostomy nurse said it would probably be best if she gets tutored. Her Dad and I agree. However she really wants to start back to school. Terribly so. She has 2 AP courses she is worried she will get too far behind on if she does not go to class. The ostomy nurse had a dilly of a time to get the appliance to stay on when she tried to help us -and she has been doing this for years... so I know its not just us. Has anyone else been through this - going to school with a leaky ostomy?

I haven't dealt with this, but I have a perm ileo. I think it is great your daughter wants to go to school in spite of her issues. NOw, whether or not that is practical is another question.

Since she is probably 17 or so, she's old enough to start making some decision or at least be involved in making them. Sit down with her and ask her if she has thought about how she would handle a leak. Walk through some possible scenarios with her and see how she reacts to them in theory. If she is physically capable of going and is willing to accept the all of the possible issues, why not let her try it? It's only a few weeks till her next surgery, so she can test things out.

I missed a lot of school as a kid and had a tutor and it really does set you back, both academically and socially. I recovered academically, but socially I never really fit back in (I was out 3 months of sixth grade).

I know as a parent it can be scary to let go - I watched my parents struggle as I made my own medical decisions and I was 26 when I was dx with UC. As a new parent (son 2 1/2 and daughter 5 weeks) I can't imagine letting them go off on their own but I think you need to let her try.

I had the same problems with ulcers around the base of my stoma as your daughter has. There was no healthy skin between the ulcers and my stoma so getting a good seal and preventing stool from leaking into the ulcers was just about impossible. My ulcers were so bad that at one point I was hospitalised for a week to try to get them and the pain associated with them under control. I have to add that my ulcers (pyoderma gangranosum) were due to my contracting MRSA so were pretty severe. Like your daughter I was having to change my appliance at least 4-5 times a day and each time was a very painful ordeal which would leaving me shaking and feeling sick with the pain.

We finally hit on a regime that eventually healed the ulcers. First I would clean out as much of the gunk as possible from the ulcers. Then I would pack the ulcers with a product called Promogran http://www.jnjgateway.com/home.jhtml?loc=USENG&page=vie...tId=09008b9880edadf1 then cover them with a larger sized piece of Duoderm (made by Convatec) and finally I would place my wafer on top of that. It took quite a while but eventually this regime helped to heal the ulcer and gave me a more practical wear time of 1 - 2 days. Once they were healed I was able to get my present wear time of 4-5 days between changes.

I have to warn you that these ulcers do take a long time to heal so don't be surprised if she goes into her next surgery with them. Her surgeon will probably take care of the ulcer while she is under so don't worry about the impact of this on her takedown.

As for going back to school, well I think Jill has come up with some sound advice about sitting her down to discuss the pros and cons of coping with this at school. If she's got her takedown scheduled for Sept 17th then she won't be missing much more school if she doesn't go back at the start of the new term anyway, but let her be the one to decide once she has come to terms with the practical problems she may be faced with.

Good luck and take care.

Shell

It's a great sign that she wants to go to school! And I think she should. If she knows how to deal with the leaks herself (or if there's a school nurse or a close friend who can be trusted to help her with them), get her a permanent, reusable pass to the nurse's office or to the gym shower/locker area. She can get up and go whenever she needs to.

I just think that, in general, it's a bad idea to hold her back. If it won't work, she'll find that out quickly. But how much better for her to get a chance to know that she can handle it herself! Don't let your own anxiety stand in her way.

I had similar problems between surgeries. I was leaking frequently and I felt like my ostomy was at the surface of the skin. I am not sure what type of equipment she is using, but I switched to a concaved wafer. It pushed down around the stoma and really made it pop out of the skin. It serves to make sure that the ostomy is not emptying close to the skin and gets it into the bag more efficiently. I would also recomend getting an ostomy belt with a wafer like that, it holds it to the skin much tighter and you feel safer. That solved all of my leaking problems, so I highly recomend it.

To actually answer the question, no I haven't been in the situation of school and having a leaky ostomy. However, I am about to teach my first college class at PC in RI with an ostomy.

Hi!
Im Gil and I'm 16 years old and a junior in High school. I have a temp ileo. I go to school everyday although I haven't had trouble with my ostomy leaking in school...I suggest letting her go back. I keep extra clothes in the nurses office, and carry extra bag, waffers, ect, in my backpack. She's probably used to crappy situations having UC. I used to have accidents all the time at school before the ileo. A leaky bag is alot easier to fix and hide than pants full of poo!
Gil