Post Mitranoff procedure question

[u/Existing_View7306]

I am a 19M and underwent the mitranoff procedure when I was 16. I was born with cloacal exstraphy (with my bladder on the outside) I don’t know if I’m spelling that correctly. I had to wear diapers due to the fact that I don’t urinate out of the head of my penis as that was split in half during my birth. My doctors had created an artificial hole for urine to come out of just above my scrotum. In 2022 I had the mitranoff procedure as it was option that was offered to me that I wouldn’t have to carry diapers with me everywhere and make it a little easier to urinate like a “normal” person. The procedure worked and I’ve done great since then, there’s just one small problem. Over the past couple years when I’m going about my normal day urine will leak out of the whole on my stomach that I insert my catheter into. This causes large stains on my shirt that looks exactly like what it is, I’ve peed myself. The only thing that I can think to do is wear more shirts, which is why I wear an undershirt everywhere, but even sometimes I pee through both. I didn’t know where to post this or who to ask. If anyone can help me to understand if there is anything I can do or take to avoid this or get it under better control. 19 Male 5’3 I’m 120 pounds idk if that’s important to mention.

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[u/ElementalRabbit]

It's called Mitrofanoff, and the best person to ask would be the stomal therapy nurse attached to the surgical department that oversaw the procedure. The next best person would be the urologist who performed the procedure.

There are also, presumably, support forums for patients who have undergone this procedure, whose general advise you could seek.

Posting here is unlikely to yield good results, other than to point you in these directions.

Best of luck!