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Urostomy bag leakage.
After 3 years of constant gross hematuria and countless cystocopies a decision was made to remove the bladder even though cancer had not been formally detected. Countless biopsies showed only a hint. after the removal, cancer was found. Now I am having trouble trying to stop the urostomy from leaking. I am using a two part system. I have wrinkles in my skin that seem to be causing the problem.
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2 Replies
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Hi ..I had my bladder and prostate removed (different cancers) 1 year ago in June and have been on a learning expedition ever since. Have tried most of the products and finally settled on the Coloplast Mia Sura one piece. We found that a change every 3 days works best for us and seems to prevent leaks etc. I did note that for whatever reason the 2 piece setup was more prone to problems than the one piece…everybody is different so take Sara Ann’s advice and call all the manufacturers to request samples and try them all. You’ll find one that works along the way. Good luck! And don’t be bashful about asking questions. And one more thing try to find an ostomy support group where you are. Check hospitals and Urologists for info.
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Have not been in your position, but do know many who have been. First, you are still at “early days” here and it will take a while to get used to the new normal…which should not include a lot of leaking. You need to find a competent
urostomy nurse who can help you find the right product(s) to use in your individual case. You may not have the best fit for your particular needs. Second, my understanding is that many of the companies who provide urostomy supplies are very generous with samples that you can try. Google and then contact as many companies as you can find, explain your problem, and ask for suggestions.Best of luck to you
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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