Again, like Alan, I have not had a cystectomy. You might use the Search function at the top right of this page and search for "urostomy" or "urostomy supplies."
Several members in the past have commented that they contacted every supply company that they found (Google it) and asked for advice. These companies were generous with advice and often provided free samples of various products for the patients to try.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Last edit: 5 months 2 weeks ago by sara.anne. Reason: Typo
5 months 2 weeks ago - 5 months 2 weeks ago#56377by Alan
I just wanted to acknowledge that your post is being seen. I have not had to have a cystectomy and many that view this probably haven't. At the same time I trust someone that has experienced your problem will see and be able to help.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I am new to this site and have had my urostomy for 2 years now. I was glad to loose 10lbs only to start a terrible journey. No matter what I do, I leak right away and am changing my appliance several times a day, even using paste!!! I do have a large belly!! Any suggestions??