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lindey1987

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Reply with quote  #1 
Hi everyone, this is my first post here (almost certainly not my last, though!)

I've been struggling with a completely relentless problem, and need some advice!

A bit of background: I have Ehlers-Danlos Syndrome and Fowler's Syndrome (to name just a couple, although these are my most "bladdery" conditions...!).

Because of these conditions together, my bladder has stretched and stretched and can hold more than 2,500ml. The walls of my bladder are VERY thin and flimsy.

Back in September, my urethra completely gave up. I was on a urethral cath for a while, but due to the Fowler's, it ripped my urethra to shreds, and it was decided I should get a supra-pubic cath instead.

I got one put in, and it was GREAT. But then ten weeks later, I went back to hospital for my first change, which my surgeon carried out.

Basically, the catheter missed my bladder altogether, and for want of a better word, it was 'rammed' into the flesh above my bladder, ripping that flesh away from my bladder and tearing it to shreds. (There's a lot of gory detail that happened that day, but it's not relevant to THIS problem so I won't go into it all!)

I had to have another surgery to put in a new SP cath.

Ten weeks later... exactly the same thing happened. It ripped my flesh and I needed ANOTHER surgery for a new catheter.

This keeps happening - I've now had FOUR operations to insert new SP catheters because my very flimsy, thin bladder means it's extremely difficult for the new catheter to penetrate it when I get it changed, and it veers off into my belly flesh instead.

My surgeon has come up with a strategy that we'll be trying at my next change - I have an open-ended cath now, and they'll insert a wire through it, remove the old cath from around the wire, keeping the wire in place, and then feeding in the new cath over that wire.

To be honest, I'm incredible sceptical that this will work. Hopeful, but sceptical. And although I've kept asking what will happen if this strategy fails, all they say is "we'll cross that bridge when we come to it."

I'm kind of a MUST-know-the-worst-case-scenario person... it's driving me INSANE not to know what my options will be if the wire thing doesn't work, and I was wondering if there was anybody out there who might know?!

Will they try and cut away at my bladder to make it a bit smaller and perhaps less flimsy?! Or might I lose my bladder altogether?! And if THAT happens, will I lose my ability to have children along with it? I haven't had children yet, and that thought scares me.

But scary as any of it might be, I REALLY need some advice, so I can start mentally preparing myself for what might happen, rather than having it sprung on me and having to deal with it all in one go....

Anybody know?!

Thanks for reading through this - so, SO much appreciated!

xxx
Moderatorsusan

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Posts: 1,040
Reply with quote  #2 
Reading your story my heart goes out to you for all you are struggling with.  I would strongly suggest calling the BHUK advice line.  One of the Moderators on this group has Fowlers herself and it may be possible for you to speak with her or at least be put in touch with others in your situation.

The line is open between 9am and 2pm Monday to Friday.  Don't worry if it goes to voicemail someone will call you back immediately.  Lines can be busy but you will be contacted.
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