Bathing/swimming

Hi All,
My daughter is a little kid with UC and it has robbed her of almost three years of childhood. We are almost at surgery and though I've been told many times that you can do "anything" with an ostomy including having a bath and swimming could someone explain how? Does it take a lot of prep work or after care? She hasn't swam in two years and loves it. I don't think we will go for a reversal for some time. If it's possible to do it in the future, we will try it then, so I need to find a way for her to be able to do everything she wants with an ostomy?
I don't know what everything is like a wafer or a flange (I've heard the words but so far clueless) so please don't assume I know what I'm talking about at all. I need to be in control so that she will feel like it's going to be "okay". So, please help!
Thanks!

Thanks Dan!
That's actually very informative - I've been reading these posts for years thinking wafer and flange were two different things and wondering how many components and supplies were involved! That already simplifies it in my mind. So, something to clean the skin, some powder or balsam (see I read this board!) on the skin, then an eaken seal which is like a gummy type of square, then wafer/flange, then pouch (assuming two piece)? That's it? So you don't tape the pouch on when you shower/swim? Just go in the water and dry off with a towel?
This is really helpful, I appreciate it.

There is also a seal that some use  that is like saran wrap. I have never seen or used it. I understand it is used to keep the wafer dry. I have never found it necessary. I am sure someone will tell tell you about it.

Dan - stoma "come alive" - that sounds bad? what does that mean? Do you avoid baths/swimming because of it?
r4p- did you use Sure Seals? If so, all of the time or only when bathing?
I'm afraid of having to use a lot of products because she has sensitive skin. I've heard some people are allergic to "everything". What happens then?

I have not been able to swim, due to my non healing wound, but before my last surgery I took baths every day. I definitely recommend the sure seals if you're going to be taking baths -- they make the wafer last longer and really hold it down. I think of the ostomy bag as a built in bath toy, and empty it beforehand -- if there's some air in it, it kind of floats.

Not sure how old she is or how self-conscious she'll be, but some choices of bathing suit hide the bag better than others. People here have talked about wearing a tankini top with either swim trunks or a bottom w/a skirt; I'm going to try that w/the trunks when I get the OK to swim again (I used to go 3 times a week, but haven't been in a year, sigh....). There are some special swim wraps with a pocket or you can use a tube top to hold the pouch down, if that's a concern.

One of the best things to do is to get a good stoma nurse (before the surgery). You'll be surprised at how fast you catch on -- it's all a bit abstract before the surgery, but then when the poop is flying out, you do figure stuff out.

Edgepark can send you samples of a lot of brands, and they can also send a sample of the sure seals. For little kids they make special pouches w/pictures of teddy bears and the like on them.

Yep, there really is no prep involved in swimming. I stick a new pouch on my belly (change the appliance) on Monday mornings and Friday mornings. The appliance stays on and I do not have to take it off between those times. Some people get even longer wear times of up to a week. When I want to go swimming, soak in the hot tub, or take a bath, I jump right in with my appliance on and don't do anything special (well, except for emptying my pouch) beforehand. When I am done, I towel dry my pouch and belly and put on a terry cloth pouch cover to absorb the excess water, put my clothes back on and that is it. Swimming does not effect my wear time... I still change on Mondays and Fridays no matter how many times I have swam during the week. When I do go to the pool, I usually swim for 40 minutes and soak in the hot tub for 20, but in the summer I have hung out at the water park for longer times than that. With an Ostomy Secrets swim wrap (which holds the pouch close to one's body) and the right swimsuit, no one would ever know I have an ostomy.

The Sure Seals people have been mentioning are great too. I just found that I do not need them. My Convatec pouches stick really well... sometimes it is hard to actually get them off without adhesive remover. Of course, everyone is a bit different but the bottom line is that people find out what system works well for them and go on with living life to the fullest. Some people do have issues with allergies. However, there are many brands and products to experiment with. It might be good to schedule an information appointment with a stoma nurse too. A good one will have lots of experience with answering these types of questions.

What Dan was saying is that you wouldn't want to take a bath without an appliance on because the output constantly comes out of a stoma (it wiggles and dances with peristaltic movement as it outputs which makes it seem like it is coming alive:) and one wouldn't want to be bathing in water that had their output in it. Many, myself included, take the whole thing off of their belly on appliance change days and shower. It feels really good to have a naked belly for a few minutes and clean the skin and stoma with water and soap. The difference is that when you are in the shower, the water rinses anything that comes out of the stoma right down the drain. One can wrap a paper towel around their stoma afterwards to catch the output and then stick a new appliance on.

It really is hard to picture before one goes through the surgery and gets hands-on practice. I barely even understood what a wafer was before my operation... forget Eakin rings, stoma powder and barrier wipes:) The learning curve is huge, but one eventually gets the hang of it. Best wishes!

-Heidi

killcolitis
Bathe with the pouch on, shower with or without the pouch on.

Edgepark is a supplier. Convatec, Hollister and Coloplast are manufacturers.

For samples and advice I always called the manufacturers. samples come quicker and the people are real helpful. Not just order takers.

I wear Convatec and am very satisfied with the products.

Dan

torranceboy
I wear durahesive convatec. The adhesive is waterproof. I shower everyday, including the day I change the wafer. I go 6 to 8 days between changes. I have gone swimming in our lake. Never had a problem.

Dan

Thanks all.
Well,not bathing/swimming is not an option. We have to figure out how to do it, so if most of you guys are doing it then it's possible right? Anyone allergic to most stuff or is it generally hypoallergenic? I assume the skin under there gets really raw?
Dan, edgepark is american so I wlll call the various suppliers this week and see what they suggest/send me. I called the local Ostomy association and they are going to "match" me with another family who's gone through the same thing.

Post Edited (killcolitis) : 2/7/2012 9:14:23 AM (GMT-7)

Killcolitis- (I just realized by your email address who you were)...it sounds like you are closer to your decision. I know how hard this is for you. I do wish we lived closer to each other.
You know you can call me whenever..seriously, I can even walk you through changing it if you feel more comfortable.
Before you leave the hospital I'm sure you'll feel so much more comfortable. It's hard to imagine it right now but if you watched me change my daughters you would realize how easy it really is. and just like everything else practice makes perfect. My daughter has just started emptying her own pouch, and she didn't make a mess at all. Did it like a pro..like she's been doing it forever. Plus she even knows how to change the wafers and all.
take it one day at a time, things will get easier for you and your family.

The only thing I would suggest is to call Hollister, http://www.hollister.com/
they make a pouchkin's doll. You should definitely try to get one if surgery is the way you're going to go. The doll has a little ostomy and it comes with a small pouch. It's a mini version of the real thing. My daughter has two and she loves playing with them.

call me if you need anything. thinking of you guys. ; )

I called hollister and coloplast and their customer service reps both sucked! i HATE crappy Canadian second rate customer service. I want sleek and OTT helpful American customer service. I've bought furniture from the US recently and I would trust that person to do a better job on advising me about my daughter's needs then the ones I spoke to. Crap! any Canadians out there with any tips? I'm probably just over reacting and our nurse will sort it out when the time comes but to be honest we've had so many crappy slow nurses that i don't trust or want to rely on them at all. i need to be proactive about this. No offense to any nurses out there btw, of course there are wonderful ones out there and we have had some of those too, just not the ones we deal with regularly unfortunately.

Thanks Dan
I will call the American numbers for info about products etc and just order from Canada when the becomes necessary.
Thanks again everyone! I appreciate and fear I will need your support and advice.
Sherry