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Stoma Stenosis

9 months 1 week ago #58354 by tmcbladder
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...

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9 months 2 weeks ago - 9 months 1 week ago #58345 by Cynthia
Tmc, Sorry you are here but welcome to our community. Sorry this took so long but a stomach bug had me busy for a few days. It sounds like you have been through a lot with this whole thing. I was dxed in 04 and had a Indiana with an imbecile in 06. Everything was fine at first the normal growing pains training the Indiana but about a year I started having trouble accessing my stoma. I spent a lot of frustrated time trying to get the catheter in but it would finally relax enough to get it in. I was told to using disposable sterile catheters to start with a ten and insert it. After draining it clamp it off and tape in place and leave it changing it every time I cathed. In about a week to go to the 12 French and go another week and then go to a 14 French. I was also told to be on the lookout for a UTI as having a indwelling catheter will up your risk for one. I tried and I wish I could tell you it helped but about a month later I ended up in the ER and a young intern at our local hospital spent a few hours trying to access my stoma after I failed at home for hours. The resident called my surgeon and his resident and my local one strategized. Finally I we were able to get in and I drained over 1600cc’s of urine. The problem that was worrying me was urine backing up into my kidneys and doing damage. About that time another problem started and I ended up with a neph tube from the left kidney as it was not draining properly and I had a raging UTI. I live in Western Massachusetts and my surgeon was in Chicago so off to Chicago I went. They had found something in my kidneys in the scans and the assumption was that the cancer had spread to the kidney so it had to be scheduled to come out. At the same time I felt it was time to address the trouble I was having with my stoma. It was decided that they could do a revision to it when they did the kidney to loosen it up. It ended up it was not spread of cancer but a very rare type of abcess that had formed in my kidney and they were able to do the stoma revision.

Since they surgery in 08 the good news is that I have never had another issue accessing the stoma again. But the downside is that under the right situation I do have leakage. There were times I felt that I jumped from the frying pan and into the fire but time has been my friend in this. The first thing I found out was to keep track of how much I drank and how long I had gone between catheterizing. If I drank a lot of liquid I could be cathing every 2 hours or go the 4 if I didn’t. I started setting my alarm on my phone for every three hours at night. I found a pad I could wear with my navel stoma (Tena Men’s Guards) they are shaped in a V the wide part at the top and they work well if you wear a higher topped panty. Now eleven years out I it is not perfect but if I leak it isn’t that often and I have learned the causes and try to avoid them.

I know all this does not solve your problem but I do have a suggestion. The only surgeon I would trust to do a revision on a Indiana is one that does a high volume of them. Now this may describe the surgeon who did your original surgery but if it does not you need to get a second opinion. If you can let us know what state you are in we may have some suggestions.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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9 months 2 weeks ago #58334 by tmcbladder
I have the indiana pouch with my stoma in the belly button. Anyone know any tips or treatment to fix stoma stenosis> It is getting almost impossible to cath. I even went down to a 12 french. I am 6 months out since surgery and it hurts extremely bad to cath. Any advice? My doctor suggested going up to a 14 to stretch it, so tried last night and it was impossible to go in. Is there a procedure for this? I have looked everywhere on line and see nothing.

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...

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