Support for dealing with incontinence
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PostPosted: Fri Jun 15, 2018 5:43 am 

Joined: Thu Nov 02, 2017 5:11 am
Posts: 10
Hi All,

First post here, so please be gentle with me.

I've been experiencing stress/urge IC for a while now, with my continence degrading slowly over time. I'm pretty much 24x7 in nappies now.

I get urges and flood, can be lying down watching TV in the loungeroom, and basically tinkle away for an hour or more sometimes, or have to stand up. I get lots of pain with urges. Some of my urges require gravity assistance in order to subside by releases into my nappies.

I've seen a consultant Urologist since about October last year for my IC issues. After Cystoscopy in November, I've been diagnosed with strictures. Two flow tests over a special toilet has my stream quite weak. I went in for a Urodynamic study about a month ago, and failed it as they couldn't insert the cathether. The flow test done at the time had me pee about 560ml over about 3 minutes of drips and drops, with a very flat line. As a result, I've been diagnosed also with a "weak bladder".

That urologist had a chat to me after my cystoscopy, and dropped the thought that I may require urethral reconstruction. After the UroD failure, she basically skipped a lot of options, and we talked about a Buccal Mucosal Urethral Reconstruction, and also Interstim. Because she couldn't do the reco, she referred me to a Urological Professor. I met the guy today.

He has prescribed me Betmiga / Mirabegron. Reading the info sheet about has me worried though, as I've had mildly elevated BP over time, but my main concern is the way it acts to calm the OAB symptoms. Reading between the lines, I'm thinking something like retaining some water in the bloodstream / body outside of the bladder. I have big problems with fluid retention in my legs/ankles/feet (and no, I don't have heart problems). I just don't want to make that worse.

Also, I'm quite constipated without taking a tablet that causes constipation. So does this mean i'll likely need a laxative (something like a lactilose-type solution) to move down there, which is unpredictable, and I may have a BM into my nappy whilst at work? No thanks.

I'll take the tablets until Wednesday, when I go in to hospital for another cystoscopy + dilation + investigation towards how to approach the reco by the Prof.

I'm ok with managing the IC, I just want the urge pain to end - am getting quite tired being woken up multiple times a night with urges that the bladder can't release, causing me to sit up/stand for that gravity assist.

PostPosted: Mon Jun 25, 2018 7:14 pm 

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1435
With some slight changes, your situation reads much like mine was twenty years ago. A urinary sphincterotomy has allowed my bladder to empty completely and has been a blessed relief. Please, get this tended to before you endure kidney damage from reflux.

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