leaking around stoma

This has been a real eye opener for me on stoma nurses. I thought my city had a shortage...only 3 in the entire city and its a major city. Their only experience has been with ileal conduits and a couple of patients who have had a neo-bladder..and i do mean a couple. Where i had my surgery The Cleveland Clinic they have a full team and even their own clinic...i was fortunate enough to have their phone number for any questions after my surgery...but to the nurses around here i was quite a curiosity with the Indiana Pouch. Pat

Juslin,
I have had my Ileal Conduit Bag for going on 14 weeks now. It did take several tries on different pouches to find one that works with my body type. I called one of the manufacturers, Hollister, to get samples of several pouches. When I finally found one that worked, that is the one that I ordered.
My Stormo nurse was the one that suggested I give several a try. The nurse was a great help on narrowing the types down to a managable few.
The only time I have trouble with leaking is when I wear a belt. My stormo is on my belt line, so I have to loosen my belt when I sit down. If not my belt restricts a good flow into the bag. My pouches last about five days. I change them every four so that I do not have leakeage based on normal wear and tear.
I really feel comfortable with the pouch I settled with. It's like my wearing only Fruit of the Loom Underwear - there is no reason to change when it does what it is suppose to do (I mean changing brands).
Take Care - Rick

Pat,

No, I did not have a stoma nurse assigned to me at the hospital. After three weeks and I went in to have the final tube pulled out, a nurse showed me rather quickly how to cath. and that was it. Later when I called, they said they had only one stoma nurse and she was primarily focused on those patients who had bags...and if I wanted to talk with her I would need to make an appointment....she doesn't answer phone calls. So perhaps I will call tomorrow and make an appointment with her. Maybe she can help. Thanks.

www.seattlecca.org/patientsandfamilies/adultCare/clinicalProgs/bladder/yourMultidisciplinaryTeam.htm

Melody it says right here that they have stoma nurses..call the number
You had a stoma nurse in the hospital right?...do you have access to their number? If not...get it and tell them you need help. Pat

Melodie now a stoma nurse as you say has no experience with the Indiana Pouch that is ridiculous. She would most definitely have knowledge of the Indiana stoma, and while you are on the phone ask someone that might know her email. I have an Indiana Pouch Mel and first of all mine never leaked and one time I fell asleep and dang put out 800cc's oops, none the less the pouch held it but I am am not making a habit out of it because it will stretch it. I called a resident at the Uro Dept at Penn he was amazed no leaking but also said don't make it a habit Joe lol. Mel do you measure the amt of cc's you are putting out and also the mucous is normal in the beginning I get also just irrigate more. Every hospital that does this surgery has a stoma nurse so don't let them tell you different. Joe

Juslin,
I have the Indian Pouch...eight weeks ago, University of Washington Medical Center, Seattle....I was never assigned a "stoma" nurse while at the hospital. After leaving the hospital and having problems myself with mucus leaking from the stoma, and then urine, I called the hospital and asked about a "stoma" nurse....they have only one, and because of that shortage, she won't respond to any phone calls, I would have to go in and see her. And I've heard she has no experience with the Indiana Pouch...tho I would think there would be similiarties. I had visiting nurses come to my home afterwards, but none of were stoma nurses either. So I guess Seattle must be one of the places with "stoma" nurse shortages. Melodie