I am a new member of the forum, but have had my urostomy for nearly 47 years. I have a parastomal hernia, am a full-time wheelchair user and, yes, I am overweight.
Over the last 5 years or so, I have been having increasing difficulty keeping a bag on, and am now at a point where I get no more than about 24 hours (36 hours if I am extremely lucky) between leaks. I have seen my stoma nurses on numerous occasions over the last 5 years and they have not been able to come up with a solution to my regular leaks.
In the last 2 years, I have lost quite a bit of weight, due to a life-threatening condition that required emergency surgery in February 2015.
Back in August of this year, I saw my urologist/renal surgeon, who won't even entertain talking about a hernia repair until I have seen the stoma nurses again for them to "explore any and all solutions to the bag leaks". Unfortunately, due to ill health for both my husband and myself, I haven't yet been able to get to an appointment to see my stoma nurses since; not that I am expecting them to come up with anything else for me to try to resolve the leaking issue, as they haven't been able to in over 5 years! In the meantime, until health permits me to actually get to see the stoma nurses (as this is the only way I can get the surgeon to even talk about a hernia repair), I have been trialing, at home myself, different pouches to try to resolve the issue.
I have tried: different pouches, stoma paste, moldable rings, flange extenders, warming the flange, 1-piece bags, and 2-piece bags. I am waiting on a couple of samples from both Salts and Nu Hope. I am currently using 3M Kind Remove tape, to try to secure the flange to my skin. I have a big issue with tapes as I am allergic to many, plus I have a moderate to severe latex allergy.
My main problem with the stoma nurses is, they do not understand the extra issues that being a wheelchair user brings to being an ostomate. Every time I reposition myself in the chair, transfer to/from chair, or push my chair, the bag seems to get dislodged. This has got me thinking if there are any stoma nurses (in the UK) who are also permanent wheelchair users, as I think they would have a better understanding of my specific problems.
Everything I read points to the hernia being the biggest of the problems contributing to my bag leaks, and even though I know there is no guarantee that a repair will work, I am willing to give it a try but my surgeon just won't entertain the idea.
I am at the end of my tether. My urostomy leaks are ruling my life, instead of my urostomy allowing me to live my life!
Any advice is gratefully received.
Please note, I did not join the forum to be chatted or picked up by men, I am a happily married woman and have been for 21 years!
Hi RachR,
Welcome to MAO. So these leaks are maybe from movement? Dose the movement make the bag peel away from your skin? If this is the case maybe the sure seal will help you. Here is a link for you to research to see if they may help.
http://alpglobal.com/Sure-Seal-TM-Rings.html
These rings are a great support by holding the flange close to my body and keep anything from making them pull away.
Hope they are of some help, they will send you samples to try.
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Hi Hatlady and all,
I've had my ostomy for over 50 years, since I was a kid, and didn't think I really needed to be part of the ostomy site. But once active, I came to realize, that although I may not need help at the time, I was able to reach out and help others in need. Back in the day, before stoma therapists, I use to visit new patients in the hospital or homes ... While professionals are great, it is also good to be able to speak with people with personal experience. I was a free member for awhile, but after writing often, I was given free months. I then started paying, and decided to just take lifetime membership. After all, I was going to have my ostomy for the rest of my life. I'm one of those people who can disappear for a few months at a time, but I'm always glad that the site is here, I can return and reconnect with old friends, and make new ones. This is an excellent site ... Best regards to all ... and Best wishes for a Healthy and Happy New Year.