Hi Cynthia! Thank you so much for getting back to me! I think we all have had some set backs during our journeys with our bladder cancer. All last year being incontinent with the Neo bladder with a fistula, I would almost rather deal with the pain and difficulty of cathing than to go back to being wet & leaky. Now I have found a good way to cover it when it leaked the first few months. I use 1/3 of a light incontinence pad and breathable medical tape and it works like a charm. I have been trying to stretch my stoma using a 14 once a day and leaving it in for about 15 minutes while twirlling it around. This has made it easier for the 12 to go in the rest of the day, but there is still that painful burning sensation. I think I will continue this for just a few weeks and if there is no improvement, then I will also look into the revision.
Another question. Do you feel it when you get a UTI? I have had one but had no symptoms.
DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...