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The neverending saga of my stoma continues. Last week I went out to a pub with some friends, for the Building Bridges Pub Moot.  I only stayed for a couple of hours, since I had to get home cos my young sibling required access to my computer (his is down at the moment, being fixed).

Flash forward a few hours and I’m in bed, reading a book. My foley catheter pops out (it shouldn’t, there’s an inflated balloon that anchors it inside the neo-bladder) and I couldn’t get a replacement one in. So while two weeks ago I had a catheter stuck in the stoma, last Wednesday I couldn’t get one in. Went to the ER and got fixed up with a new foley catheter in.

The “service” I received was night & day compared to the prior visit. Guess they pulled the doctor’s notes from the last visit and I was whisked off rather quickly to the examination room. I think it also helped that the entire front of my nightgown was heavily soaked in blood — and no, I wasn’t feeling any pain, just annoyance that I would have to get a new nightgown as blood is sooooo difficult to get out 🙂 But I guess the gushing of blood did help with getting me seen to rather quickly.

My ever faithful companion Mr Tarotcub accompanied me to the ER. I did not take him with me into the examination room for a couple of reasons:

1. the blood still coming out of the stoma, only the strongest of people can handle seeing that

2. most people are uncomfortable with minor medical procedures unless it’s done on them.. on someone else, unless they are my mother (she’s like a valkyrie when one of her kids requires medical attention).

My brother is very concerned about my “constant” visits to the ER. I am concerned as well, as I have read on the Exstrophy mailing list that I am that in about a third of all cases the stoma does sometimes require re-opening. So that’s the reason for the foley. Because the stoma has been traumatised, in it’s healing phase it could seal up unless there is  some foreign body to maintain the “tunnel”.

I called and left a message with my urologist’s office to say that I have been in the ER and it was highly recommended that either himself or his underlings (aka his Fellows or Senior Residents) take a closer look and determine what needs to be done.

What I have been doing, whilst away from the ER, is drinking lots of fluids and trying to lose some weight. I haven’t weighed myself, but there is a string around my waist so that I can anchor the leg bag to something while puttering about.. the string feels looser, a bit, so I’m pleased by that. In the meanwhile if anyone would care for a stroll I wouldn’t mind joining in.. I have a vested interest in ensuring I get enough physical activity.