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My stoma is shrinking. This happened after my last scope with dr Shen in June 2024. I can only use a 24 fr catheter now, the 30 fr is too painful. After trying many different lubes—honey, lidocaine, calmpostein, and a “binky” nothing is making stoma larger. After a video visit with Dr shen he said the next step is the dilation. I also have some white smooth granulomas that cover the stoma, like a flap. Even if they are removed, the stoma still seems too small.
has anyone had a stoma dilation and was it successful and how long did it last??

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Marz--YES Dr. Shen dilated my stoma two years ago.  I am still so pleased as able to use a 34 fr.  Because I didn't have anybody to pick me up he was kind enough to do the surgery with lidocaine shots to the immediate area.  The anesthesia team was convinced it wouldn't work but I'd do it the same.  Ask him for his opinion on it.  Stoma was tender for a week or so afterwards, but not a problem.

Can't speak to the granulomas other than mine are very small.  Yikes, that sounds annoying, at the least.

Because the 34 fr's tubing is more dense than the 30 fr I am able to enlarge the holes, which are the same size as the 30.  This  enables easier elimination of fiberous stool.  Sent sample catheters to Dr. Shen and he didn't say no.  I take that as permission to continue using them.  Am over-due to post this DIY on our K-pouch Korner.

DM me if you have further questions,  Hope you can get this surgery soon.  A mess if you ran into emergency in place that responded: you have a what?

Peace, Jan

Thank you Jan for your “positive” response!! I just made my appt for sept and not worried about stoma being tender—-because it’s already tender just using the 24 fr. This happened right after my yearly scope in June. He did dilate the inside a bit In  June,  but I never expected this to happen. I’ve been having scopes for about 12 years and it’s always been ok.
I think I will have anesthesia since my husband will be there —but maybe not. Dr Shen said the dilation takes one minute. I asked how long the “inside” pouch dilation took and he said. 1-2 seconds.
I will be happy if I can continue using my 30 fr catheters. I had a dermatologist remove the granuloma, but it didn’t really help. Shen also said it’s my muscles that are causing the problem. I tried the 24 stent for a few days, but it was very painful. I could only keep it in for an hour at a time, and then the stoma went back to its small size immediately.
thanks again for responding. I will let you know what happens.
marsha

Marsha – Did Dr. Shen mention which muscles were problematic?
Sure hope you can make it until September. Sounds like a tough situation, for which I have no suggestions other than standing up or lying down when inserting. Did Dr. Shen have others aside from leaving a stent in to expand stoma? Yes, please keep me posted. Jan.

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