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leaking around stoma
We have a family friend who very recently got an ileostomy. Now that she is at home, she is having difficulty with leakage around the stoma. Homehealth care has tried 2 different types of bags on her and still no luck. Has or does anyone else seem to have this problem? She has asked that we get on the internet and ask around for her…hope you can help!
Thanks in advance for your time and input.
~Juslin~ -
12 Replies
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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
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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.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightMelody 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
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Once again…thank you for all of your help! You have been so wonderful! I just don’t know know what we would do without the internet (hope we never have to find out). These message boards are the greatest.
~Juslin~
Juslin,
If you call the Dr. I am sure they can put you in touch with a stoma nurse. The visiting nurses assocation should have a special nurse for stomas. I had one who came to the house a couple of times a week for the first month I was home. I have found though that some areas of the country have a real shortage of them. Joe is right. Information is valuable but nothing can compare to the stoma nurse helping her hands on.
Blessings…Jean
No Juslin the nurses that come to the house are more shall we say wound nurses. When whoever you are talking about they had a stoma nurse in the hospital they were at before and after the surgery. Now to me the best thing for her to do is call the hospital and make an appt with either of the two. Either the surgeon that did the operation or the stoma nurse she had in the hospital. Good Luck, Joe
Thank you for all of your input, it has been helpful. However, I am a bit confused on the whole stoma nurse thing. As I stated in my original post, she has home healthcare…would the nurse who is coming to her house be the stoma nurse or is that someone else? Im not sure our friend truly understands everything that is going on with this ileostomy (she’s an older woman). Once again, thank you!
~Juslin~
Juslin everyone that gets either a Indiana Pouch or Ileal Conduit Bag is assigned a stome nurse in the hospital. Sitting right in the chore of the desk I am typing this post is the card of my stoma nurse this is your best shot to get this issue resolved professionally, leaking of any kind is nothing to play around with. That site is nice Jean posted and you might get some good info there but more then opinions you need this fixed and that’s why they have stoma nurses- use them. Joe ;)
Juslin,
I have a urostomy (ileal conduit) for bladder cancer and I have gotten a lot of information on the united ostomy board. Go to UOAA.org and when you get to the site click on discussion. You will get a very helpful message board. Several people with ileostomies post every day. I had trouble with leakage of my urostomy in the beginning and I was given a lot of helpful information. Hope this helps.
Blessings….JeanSign In to reply.
