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So if anyone has followed my posts in the past they would know I've been trying to get a double sphincterotomy lately. For those who haven't, let me explain.

I'e always loved wearing diapers for as long as I can remember. About 18 years ago I got into a bad car wreck and have had urge incontinence ever since. Now I certainly do like the diapers but my urges are annoying at best and painful at worst.

I've had every med for incontinence, and even a few surgeries to try and eliminate my urges. This has actually made things worse for me as I would just flood my diapers before, but now I also have an obstructive sphincter which means I have a hard time peeing as well. This is like a double wammy on me now since the longer it takes for me to pee the more painful my bladder gets.

I'd like to also point out that my urges are most likely a result of neurogenic bladder caused by spinal shock and spinal bruising from my wreck. As such I do not have a conscious control over my bladder that I could choose to give up. This means the 12 month program, or just keeping it relaxed down there, just won't work on me. Nor will hypnosis.

About 8 years ago I came to realize that there just wasn't a "cure" out there for me- no matter what my urologists wanted to try. That's when I started looking for ways to make me pee openly without my bladder ever filling up. Thereby eliminating my urges out right, and as a bonus, allow me to sleep through the night.

The hard part has been finding a urologist that first, won't focus on solely curing me with more pills. And second, will actually listen to what I want, to help me cut my losses and focus on improving my quality of life.

I think I may have found one at my local mayo clinic though. My first appointment with him seemed to have gone pretty good, but now he seems to be wavering a little. He now want's to do another urodynamics test on me- the third one now in a single year. His main concern seems to be that urogists just haven't done sphincterotomies in 6 years now (where was I 8 years ago then).

I've written him a personal letter in the hopes it will persuade him to do it, but it seems this is still all in the air. I'm worried this won't work out for me as I see no other realistic alternative for me. I'm still holding out to the hope he will focus on doing me good instead of failing that and doing no harm, but we'll see.

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I've read many of your posts, Baby Brian, and feel bad for you that this is such an issue for you. It sounds like what it ends up being is that old "Do no harm" thing comes back and smacks you in the face. We've got our share of wannabe's on the Incontinence - Desires side of things and there, though it's an unpopular opinion I think, the "Do no harm" is a lot more valid. In your case, I believe as you state, that not allowing you surgery is doing you harm!

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i agree with diaperpt, not doing the surgery is doing more harm than what they realize and are trying to prevent. please do keep us updated and all i can say is just keep on them, eventually you'll find one willing to do it.

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Boy I wish my doctors had your mentality. I'm not so sure about finding another doctor if this one doesn't pan out though. The one I'm seeing now is out of network so I'm paying more as it is. I have also quite literally seen every urologist now that is within a 2 hour drive of where I live. I've even posted on Medibid asking other doctors in the USA if they would do it. In the past 3 months I've had it up, I've only gotten one bid for zero dollars saying they don't do sphincterotomies any more (stupid right- why put in a bid at zero and say you wont do it?). Hopefully it won't come to it, but it looks like my absolute last resort would be to somehow start looking outside the USA.

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hugs you softly* just don't lose hope, i know it's hard and discouraging but if it helps get you better, then by all means look outside the u.s.a. as your overall health is more important.

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Have any of the doctors proposed alternative solutions to make it easier for you to urinate? They may be reluctant to do the sphincterotomy, but what about the balloon procedure that expands the sphincter? I'd recommend you concentrate on the ultimate goal (easier urination, without the need to strain) and less on the means of getting there. I think doctors are happier coming to their own conclusion, rather than having it dictated to them by their patient. I assume you've documented everything that has been done to you and the results. Once the various alternatives have been tried or considered, a sphincterotomy will be the remaining logical solution. I know you've been through a lot over the years and that some of the so called "solutions" have made things worse. I think the best thing you can do is document and lead the doctors to the solution you want rather than tell them what it is.

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Hey brian

Ask tour doc to explain WHY they don't do sphincterotomies. Ask him about institutional barriers, such as boards of ethics.

Somewhere, I believe on Incontinence desires, I believe someone had taken a foley cath, plugged the urine outlet, and made holes to the urine lumen just outside the outer sphincter, so urine leaked out between the urethral wall and the outside of the catheter. Would that sort of a removable "stent" be an option for you, possibly as a test to convince your doc that a sphincterotomy will in fact improve your quality of life?

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Dill Pickle, A stoma and caths are meant to be mixed since you wouldn't have any feeling in the stoma. You could cath many times over and not feel it. If it comes up again though I'll have to make sure and ask to talk to one of his "successful" cases and see what that person thinks. I'm also in the same mind set for the botox. Why wouldn't they want to do it? Instead they act like it isn't even a procedure or valid option but I have read about it in a couple of different places- one being a medical papers web site (very boring but still there).

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I don't understand why your urologist won't try something temporary like Botox. Usually they will try drugs on any hope of improvement.

I just saw my urologist a couple of days ago, and he says "want to try some drugs, I have some samples here."

That's on the first visit, he's going to schedule urodynamics testing so he doesn't even have much info to go on.

He suggested if drugs don't work he could inject Botox into the bladder to partially paralyze it making it hold more.

I declined the drugs for now, and told him that decision can wait for more info from the tests and a careful evaluation of side effects.

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Kevundhca, I did get the botox treatment but there is more than one way to use it though. I had the injections in my bladder wall which did eliminate my urges but it also eliminated my ability pee even the slightest. That treatment left me catheterized for over a year!

What I'm asking for is to get the botox injected into my sphincters in order to leave them temporarily dead and open. However, as I said my urologists are pretending this isn't a valid treatment even though it has been documented by the medical community as working for up to 6 months.

FYI, Yes even now they are still eager to dull out more pills on me even though I have already tried ever type of incontinence med out there.

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Thanks for that info Brian. I was thinking Botox in the bladder might be a bad idea for me. I maintain continence in the day by going pee frequently, as I can go whenever I want. Sorry, you probably don't want to hear that.

If I couldn't go when a bathroom is available, I suspect that would lead to more accidents as I can't hold it very long when I get the urge.

You would think an educated person would know that doing the same things again will not produce different results.

I suggest with every suggested treatment, you ask how will it be different from last time. Make him justify what he wants to do.

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Proven meathod. Get a 4 wing catheter cut it to about 90mm in length, varies slightly person to person, from the opposing end of the 4 wing part measure 10mm in and insert fishing line through the side wall of the cath and loop it out the top tying it to make a 45 degree bend so the cath doesn't migrate past the external sphincter and let the line trail out so you can be continent again later. Get a thick flexible wire, guitar string works. Sterilize in alcohol, insert till just past the point of resistance and presto you will have true incontinence and unlike a cath you will feel it come out, 10 or 14 fr 4 wing cath is the only one that will work. I also found the funnel end can be cut so you can slide it down the catheter about 10mm back from the expanding wings further preventing chances of migration.

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Gerber, I've this (and many variations) in the past. Any smaller than a 14fr catheter irritates the lining in my urethra. I can stand a thick fishing line for a few hours at best, and something as thin as dental floss feels like its cutting through me the moment I put it in.

As such, a modified catheter with any sort of string on it is just not an option for me. Besides, I'm in need of a permanent fix, not some temporary bandaid that could possibly bring more complications. Thanks though.

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@Brian-

I'm not sure if you've brought this up t0 your current dr. As a halfway measure.

Chemical Sphincterotomy is the same idea as above, but not considered a permanent surgery.

In this surgery, botox (or botulinum toxin) is injected into the sphincter causing it to relax and open, allowing the free passage of urine any time the bladder (detruser) muscle contracts. The result is the same as a surgical sphincterotomy, requiring an external collection device or diaper, but over a period of 6 to 9 months, the procedure must be done again, as the effects of botox wear off. The benefits of chemical sphincterotomy is that it is temporary and will allow someone who may be considering permanent surgical sphincterotomy to see if it is something they can live with permanently.

Not sure if it has been ruled out previously due to other complications.

Just a thought.

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Blake, As I said in my past post here, I did bring up the botox for just my sphincter. The two separate urologists I mentioned it too both pretended they never heard of it, that it wasn't a real procedure, and wouldn't consider doing it for me. Weird right?

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