Chronic illness · Health · lifestyle · Urostomy

All my surgeries

Thank you to all of you that have read my other two posts. I don’t think anyone should be ashamed to talk about their bodies, no matter what is right or wrong with them.

So last time I told you where it all went wrong with my bladder and the struggles I endured. Today I want to touch on all the surgeries I have had to go through because of my dreaded bladder.

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In late January of 2015 I would change the way I had a wee…forever. I was booked in to have a Mitrofanoff. A what I hear you say.  A Mitrofanoff is a diversion from the bladder out through a channel in your tummy button, or in my case just where my knicker line came up. If you have your appendix they will use that to make the channel, if not they will use part of your small bowel. Because my appendix was still there and healthy that was how they made mine. Then you use a catheter to self catheterise through that hole.

About two months went past and the new way of weeing was going drastically wrong. I was peeing out of my urethra with no feeling and sometimes it was a little and sometimes it was a lot. The Mitrofanoff still worked if I catheterised it but I was incontinent, at 29. Believe me tears were shed by the lorry load.

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Medication was given as they said it could be spasms in the bladder and not the sphincter as that didn’t function. So I tried that, I’d have tried anything they gave me.  For about 3 months that helped then one evening I got up from the sofa took a few steps and woooosh all over the laminate floor was wee from my urethra and the new channel. The next morning I got on to the urologists secretary and said what next….

The answer they came back with was Botox into the bladder. I had I reckon 8 lots of it over a 4 year period and it was only effective for 3 months then I’d have to wait 3 months on a waiting list.  So there were times while waiting where serious wee accidents happened.

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At one point while doing my Botox there was a few bladder stones, which I was unaware that I had….also I dunno how long it had been there for.

With other illnesses sending me into hospital, some nurses were reluctant to help self catheterise me. It wasn’t as if I had to open my legs up. Because they didn’t help, wee accidents  happened. I was no better on from when I started getting bladder problems.

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In March of 2019 we had to make the decision of a lifetime, to remove my bladder and have a permanent stoma – an ileal conduit is the right term and a urostomy ( a bag to wee into that’s attached to your tummy. I was under for 9 and a half hours. My bladder was stuck to my womb and bowel so attention to detail was needed to save the womb and the bowel while removing the bladder. It wasn’t the stoma they wished for as there wasn’t enough blood supply to bring it up and out so I was left with an innie that leaked and was a pain to look after as it didn’t have a spout to keep the bag comfortably in place. 

Back and forth to hospital for emergency appointments over the next 10 months was horrendous. So we had a chat with my surgeon and said what can we do to make things better as I’m at my wits end.

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So the end of last month I had Stoma revision and mini adominoplasty. This was performed by a plastic surgeon and my urology surgeon. I didn’t have much fat to take away but the skin that they removed would allow there to be a smoother base and my stoma would have enough blood supply to come out like the spout I should have had first time round.

Next time I’ll chat about how it’s been since I’ve been home.