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Posted 2/6/2007 7:39 PM (GMT 0)
Hey everyone. I've been reading this forum for a little bit. I am considering getting an ileostomy for medically unresponsive ulcerative colitis. I am young man and want to stay fairly active.

1. Based on your experience, what things should I consider about WHERE the ostomy should go? I wear pants/shorts just above my hips...should the ostomy be below my belt line?

2. I've heard the life with an ileostomy is a lot better than living with UC. But living with an ileostomy can't be that easy either...what are the hard parts of dealing with an ostomy?

Thanks!
Posted 2/6/2007 8:15 PM (GMT 0)
My ileostomy is below my wasteband/beltline. I don't think you'd want it above or the waist of your pants might bisect the bag. Keep in mind that waistbands on pants change periodically. Having the ileostomy too low could end up being a problem. Also the nurse marked mine after asking me about how I wear my pants/slacks etc. and observing me sitting down, bending foward, etc. Living with an ostomy has its challenges but I think most who have one would agree that buying pants with a higher waistband is a minor thing. From what I know people stay as active and athletic with one as they were before they got their ostomy - in a lot of cases more so because they feel better. You'll be fine. There should be an ostomy nurse associated with your surgeon's practice or the hospital - they have a lot of information about ostomies and different tricks of the trade so to speak. Keep regular appts. with them and call and leave them a message if you have questions in between your visits. They are a GREAT resource!!
Posted 2/6/2007 9:39 PM (GMT 0)

Hi Doc,

I've had my Ileostomy for nearly a year now, which is below my waistline, and I haven't struggled that much with pants. I tend to either wear trousers with waistlines above my bag or they just go straight across it, but not too tightly.

As for dealing with the hard parts of an ostomy I take things on a day-to-day basis. I've never been happy about my ileostomy, as when I had my surgery it was completely out of the blue (I didn't even know I had Crohn's) so I never really had the benefit of being ill (if you can call it a benefit!?!?). However, I couldn't be happier with my life, I can do whatever want whenever I want. The only thing that holds me back is my confidence due to the ostomy but over time I'm overcoming this obsticle and I'm getting my self confidence back.

Hope this helps :-)

Posted 2/7/2007 12:44 AM (GMT 0)
i'm happy with my ileostomy, wish i would have had it done sooner. it depends how you wear your clothes as to where you want the stoma. if you wear your shirt over your pants, then the higher the stoma the better, and your shirt will cover the bag. i wish mine would be a bit higher, but too late now and it worked out ok. if you wear your shirt in your pants, then the lower the stoma the better so that the bag is hidden under your pants. but remember when looking at yourself in the mirror that the stoma can't be located where your body bends...it'll have to be above or below that. (most likely above)

when you're talking to the surgeon, get him/her to send in an et nurse and she'll tell you where she thinks it's best. bring a marker along and mark the spot, then go home and measure down 4.5". that's how far the smallest drainable hollister bag will hang. then measure up 2.25", that's how far up the bags go. width of the bags are 5" at the widest point. other company's make different shaped bags, but they're all kinda the same overall dimensions. so using this info you can sorta adjust to where you want to have the stoma to fit with your clothes.

i didn't have a choice where they put mine, but i wear the same clothes now as i did before the surgery. so it's not that bad. good luck

--matt
Posted 2/7/2007 3:20 PM (GMT 0)
Thanks for your replies. I just used those measurements and the bag would go into my groin area...is that right? What happens when you walk...does the bag flop around? sorry, i'm new to all of this and trying to get as much info as possible. Are there any other websites/pictures on the internet?
Posted 2/7/2007 3:54 PM (GMT 0)
if you wear a bigger bag (ie 12") one can tuck the end of it into your pants, so it doesn't "flop around." with my smaller bag i just let it hang. honestly i don't feel it flopping around. i've been out in my garage working on my atv and when i'm out there i don't even realize i've got the bag..only time you notice is when it requires emptying..that takes less then 5mins and then you're back to whatever you were doing.

my bag is slightly to the right of my groin, the idea is if you wear a larger bag you could sit on the toilet and empty the bag between your legs...probably useful for the elderly who can't stand and empty...or perhaps that's what everyone does, and i'm the oddity who stands, lol. if i do wear a large bag it interferes with my *cough* "unit," but my smaller bag doesn't touch my errr "unit."

go to a medical supply store in your area (your corner store pharmacy doesn't carry this stuff) and check out the bags to see how they'll fit on you. your surgeon will have some samples to show you too, but remember they use the cheapest stuff they can get, which usually means big & ugly.

--matt
Posted 2/8/2007 4:43 PM (GMT 0)
Matt, I just have to say that your posts are always interesting - you really have a way with words. Keep it up!
Posted 2/8/2007 5:42 PM (GMT 0)
Hey guys...I have one more question. How many times do you have to empty the bag in a day? And at night? This may depend on the size of the bag? I've heard many people have trouble with gas building up and occasionally "burp" the bag.
Posted 2/8/2007 7:26 PM (GMT 0)
doc, i use hollister's smallest drainable bag all the time. (except when i had the flu, then i switched to a large bag) i average 7 empty's in a 24 hr period. at night i sleep for two hrs, wake up, empty, then go back to sleep for 6hrs straight. then i have to empty again when i wake up. i wake up after the two hours because i have to pee, not because i need to empty, but i figure since i'm up anyway i'll empty the bag. i think most everyone empty's when they need to pee, i mean you're in the bathroom anyways, might as well take care of alllll your business!! as soon as i get to bed i fall asleep right away, no problems there.

as for gas, the bags with filters work great until they get plugged, which is usually the first time you lie down or take a shower after installing the bag. (i've only used hollister so far...) which means that for the remainder of the time you wear that bag, yeah you'll need to "burp" the gas out, IF you have gas. that means separating the bag from the flange in one area for 1 second while you squeeze the bag to get the gas out. NOTE: do this standing up, if you do it lying down you'll get feces squirted on your chest. that's right, that's EXPERIENCE talking, ha!! after a while you'll get the hang of it, i burp the gas under my shirt while walking up the stairs. you'll learn how to do it and it'll become automatic--no big deal.

i would think everyone is differnet with their output levels as well..maybe some others can post up

--matt
Posted 2/8/2007 8:15 PM (GMT 0)
If you use the two-piece system, can you wear the smaller drainable bag during the day...and then switch to the larger one at night so you can sleep through the night? (I need my precious sleep...hopefully uninterrupted)
Posted 2/8/2007 8:23 PM (GMT 0)
yup, you got it. if you're using a two piece setup you can switch to whatever bag you want to use, whenever. i recommend doing it lying down. (changing the bag) some people just use disposable bags and change the bag when it's full instead of using drainable bags....but unless you're made of money though, that's usually not an option for most people.

--matt
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