Crohn's Disease Forum » Surgery » Stoma Subforum » Mom's Ileostomy


02-14-2016, 09:20 PM   #1
Hope_I_Don't_Cry
 
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Mom's Ileostomy

So my mom came back from the hospital two days ago. I know I don't exactly have chronns, but my likelihood of that is 50/50. My mom had an Ileostomy done and the doctors and nurses keep ordering the wrong bags for her. She came home with a large bag. I'm not sure what "mm" but it worked so great on her. Even the 70mm were decent though the hose to the second drainage bag that goes into the spout doesn't match up. We used the last because of leaking, but now we're stuck with the 8 hr lasting small drainage bags...with only one clip left. Do you guys know what I should do? The nurses don't get it right...the doctors made her experience a living nightmare...and we're not sure if this is permanent or reversible. What sites do you recommend for getting the right bags? Please give me any helpful tips and opinions. Anything will be great. Any information will be awesome.
02-14-2016, 09:45 PM   #2
DJW
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Hi and welcome.

What brand appliance does she have? Is it 1 or 2 piece? Is it a Velcro or plastic clip closure?

Waffer are usually cuttable. If so, on the next change leave about 1/8th of an inch around the stoma. That should help prevent leaks.

Check the web for stores selling ileostomy supplies in your area. Just in case you need get supplies tomorrow.

Worse case, maybe you can get a pouch and waffer from the ER if you have a problem in the middle of the night.

Just an FYI, it will get better and easier. For me, leaks are an extremely rare occurrence.
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02-14-2016, 09:48 PM   #3
DJW
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I'll add, start contacting manufacturers for free samples.
Veganostomy has a lot of information about ostomy products on his blog. He's also a member here. Hopefully he'll be along soon.
02-15-2016, 02:48 AM   #4
fuzzy butterfly
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Hi sorry your moms having problems right now. Does she have a stoma nurse . If so contact her and hopefuly she can help you best as they are trained specialy to deal with stoma issues. As others say get on the web n get as many free smaples as you can. Most companys offer them. Just type in.. ostomy pouches and you should find a good few sites to try. Best wishes 💕
02-18-2016, 10:26 PM   #5
Hope_I_Don't_Cry
 
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Yes, we looked at Coloplast to see if they would be better suited bags since her stoma is directly aligned with her skin so she needed something that would bend with her. That was the problem with Hollister product bags. We don't have a stoma nurse, but managing her is quite difficult with the medications, TPN, and ordering new supplies along with not having enough proper equipment such as bedside commodes. We do have a visiting nurse, but she's rather rude and judgmental. She's always late and talks too much as well. So the bag is a two-piece so...that's what I meant by CLIP which is understandable mistake. But any other recommendable sites would be great.
02-19-2016, 04:35 AM   #6
fuzzy butterfly
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Hi, ok here a few I can remember, Hollister, Salts, ConvoTec, Charter, Dansac. you should have been given a stoma nurse but it may be a different case if you are not in the uk, I'm not sure how it works in other countries. I seem to recall others say that they have one though.
As her stoma sounds like it is not a sticky out one you may need to look into convex wafers on the bags as they are made to fit that kind of stoma better.
Hope that this has been helpful and that you can find a better system (pouch) that makes things easier.
Best wishes n hugs 💕Mandy
Ps I'm not sure but the one piece may be better ffor bending as I think they are more flexible, I have not used a two pieces so can't say for sure..
02-24-2016, 06:51 AM   #7
Susan2
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Coloplast has a range called Sensura Mio and they have just introduced convex wafers in this range. I would get some samples of these, if I were you.

I use another Coloplast convex one-piece called Alterna and am reasonably satisfied with these. The convex Sensura Mio have not reached Australia but I have my name down for some samples when they are available here.
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
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