Seeking Advice and Sharing Experiences with Urostomy

Hi everyone, I would be interested to talk with fellow urostomy sufferers. It seems that most of you have colostomys or ileostomies which, although similar, have different problems. Post operatively I developed incisional hernias and I have great difficulty finding the right equipment to cope with these two problems. One of our fellow OstoMate's suggested that my stoma is not well positioned and I should perhaps have it moved, but before doing that I thought perhaps someone out there might be able to come up with some suggestions.

Best wishes to you all,

Andy

Hi Andy,

I have had my urostomy since I was 2 years old. I have had to have a reconstruction of the stoma when I was in my 20's. I am now 60. Can you give me some more info on what is going on?

I see you are in the UK so you guys do things a bit different than here in the US but I will try to help you if I can. I am the President of our ostomy support group as well.

If I can't help maybe one of my fellow urostomates can give you some advice too. I have a Zoom meeting and our ostomy nurse is usually on the meeting so I can ask her too.

Please contact me if you want to do this privately. Send me a message on here. 

Hope I can help in some way and hope to hear from you.

Take care.

Nancy 

Hi Andy,

I've had my urostomy for 46 years since age 10.  The best thing you can do is see an ostomy nurse if one is available.  Another suggestion is using a convex wafer and possibly an ostomy belt.  Also, you might try a moldable ring like Eakin to fill in the deeper areas.  There are pastes like from Hollister that might help with leaks.  You might do better having your hernias repaired than moving the location of your stoma because the hernia situation can change or get worse.  Good luck!   Tom