What needs to be done to keep the site of the ileostomy clean? The rectum area?
Not much really. I just hop in the shower without a bag on and let the water run over my stoma and gently scrape any leftover adhesive off with a finger nail. Others use a special adhesive remover and/or cleansing wipes. His stoma nurse will show him how to clean around it. It's not hard at all. Remember this is the intestine we're talking about - it's used to having dirty and unsterile things in and around it :) However, having said that, he will need to keep his skin surrounding the stoma clean to stop any skin irritations - but he'll learn that lesson really quickly if he doesn't keep it clean!
If his rectum is left in, he'll probably still pass mucous from time to time (completely normal and shows the mucosal lining is still doing it's job) and will just look after it like he does now.
If his rectum is removed, then there is nothing there and it can be washed just like any other part of the body.
Ruth also said...
can you imagine yourself at that age playing basketball or soccer? What if you collide with another player, or fall badly? What would happen if the ileostomy site was hit?
Rolf Benirshcke played 7 seasons for the San Diego Chargers with his ileostomy. I have his book - it's called Alive and Kicking. Rolf was very active in the old UOA (United Ostomy Association) and I presume still is with the new UOAA (United Ostomy Associations of America) esp in talking to younger kids with ostomies.
There are special stoma guards you can buy to place over the stoma to minimise damage but really, stomas are a lot sturdier than they look. I've never managed to damage mine in 30 years and I've never taken any special precautions even when rock climbing, etc. I've only known one ostomate (out of the thousands I've chatted with over the years) who has managed to cause her stoma harm and she did it by walking into the corner of a table!
I don't even know if the bag must remain on constantly, or if you can temporarily cap it
With an ileostomy, it outputs approx 95% of the time (even though you usually can't feel it working) so you must wear a bag constantly. I do take my bag off to shower on change days but then output just goes down the shower drain anyway (I wouldn't even try taking a bath without a bag on - I'd end up messier than when I started lol).
Can you swim?
I was in swimming four weeks after my surgery. I just wear a one piece bathing suit with a pattern or splash of colour across the stoma site. For guys, the board shorts do fine :)
Is the bag visible beneath your clothing?
The Queen Mother had a colostomy for 30+ years before she died. John Wayne, Ronald Reagan, Bob Hope, Petula Clarke and many others all had/have colostomies/ileostomies. Bet you couldn't pick it on them :) You've probably spoken to many ostomates and not known it. What I'm trying to say is that no one need know about his ostomy unless he chooses to tell them about it. It's important to ask the surgeon to place his stoma below his belly button so that he will still be able to wear jeans and pants and not have the belt or elastic hinder the bag in anyway. His stoma nurse will site it properly for him hopefully.
Ruth also said...
Any embarrassing smells or noises as it fills?
Bags are odourproof and unless he has a leakage it won't smell ordinarily. Of course, when he empties, that's another thing altogether - the odour can strip paint off walls - but then everyone smells when they go to the loo anyway. There are special ostomy deodorants you can buy but the cheapest and most effective means I've found is to put a few drops of 3% hydrogen peroxide (no stronger) into the bag each time you empty. It completely eliminates any odour.
There will be noises from time to time (esp at first until his stoma settles down a bit). This is my biggest (and really only) complaint about my stoma. Harriet (my stoma's name) just 'knows' when it's the best time to make herself heard, usually in quiet meetings. However, to minimise gas noises, it's best to have a little something in your tummy at all times. Some ostomates don't eat to try and stop it but not eating just means more gas and consequently, more noise.
It sounds like you still have the ileostomy bag. Did you have the option to get reconnected? I know it was long ago that you had the surgery?
They initially left my rectum intact in the hopes I could have j pouch surgery however it was too badly diseased and had to be taken out a year later. In those days, j pouch surgery was in it's infancy and nowadays they probably would have just scraped the rectal lining out and gone ahead with the j pouch. However, I don't regret not having the j pouch surgery one bit - I'm very happy with my ileostomy - it doesn't stop me from doing whatever I want to do.
I have had an ileostomy for 30 years now due to UC.
I'm not a complete idiot - some parts of me are missing!