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HumanFly

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Out of curiosity, did the doctors ever mentioned anything about what if there was too much trauma from intermittent catheterization ? That they might be willing to perform a sphincterectomy in this case?

I'm asking because my biggest fear is ending up like that, i had a completely unresponsive bladder once, couldn't get sphincter open either then. It was frightening.
Since such situation is last resort and extreme, I'd think they'd consider making life more comfortable by removing the blockade if catheterization is no longer possible, but I'm not sure.
They would likely go for the suprapubic catheter first, and use the temporary sphincterotomy (with botox) before considering the permanent one.
 

winterheart01

Est. Contributor
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Adult Baby, Diaper Lover, Babyfur, Diaperfur, Incontinent
They would likely go for the suprapubic catheter first, and use the temporary sphincterotomy (with botox) before considering the permanent one.
Yes, but i had these things already discussed with my doctor, suprapbics are no option for me because i need both sides of my belly for insulin pump and cgm and there zre marlex nets from groin hernia repair blocking the way. Botox am getting for the second time now but 100 units id not enough..
 
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ltaluv

Est. Contributor
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279
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Diaper Lover, Incontinent
I haven't had any trauma to my urethra from the routine self catheterization. My insurance covers hydrophilic catheters, so they're very slippery and easy to insert. I use Lofric Origo catheters, which in my experience are head and shoulders above most others. I have lidocaine get that I can put in my urethra if it's irritated from the catheters, but most of the time I don't need it.

My biggest problem comes after a bladder hysrodistenrion. My last one was nearly two years ago, and I had a Foley for nearly a month afterwards because I had severe pain when I had any liquid in my bladder at all. Once that finally subsided, though, I had a long period where my bladder pain was almost gone, and the bottom injections I get in my bladder wall three times a year were nicely controlling the incontinence. That lasted for over a year before the incontinence came back.

If I had to use a Foley for a long period of time, I'd rather have a suprapubic. Less irritation, and less impact on my sex life.
 

winterheart01

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Adult Baby, Diaper Lover, Babyfur, Diaperfur, Incontinent
If I had to use a Foley for a long period of time, I'd rather have a suprapubic. Less irritation, and less impact on my sex life.
I know....but i have no choice. Suprapubic s are not an option for me.
Am due for 6 to 10 months using a Foley , and possible repeat of Botox but I'm getting tired of these surgeries.
Foley's also aren't so slippery as intermittent caths, so I'm going to use like you said instillagel (lidocaine) with plenty of endosgel, but am not looking forward to it
 

Rob110

Contributor
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Incontinent
Hi Woodenbelly Sorry to hear you are having to deal with incontinence issues, you seem to be in the same path I was on when my bladder issue first started unfortunately there is no time frame on how quickly bladder issues grow worse. If you are at the stage where you are not making ot to the bathroom and your mini surges are getting closer to full floods then it may be time for taped diapers 24/7 you can still use the bathroom when you can but you will have the peace of mind knowing your are protected when you cant make it in time. Taped diapers are easier to change when out snd about as you do not have to remove your pants to change and will work way better then pads in your underwear as you will find you will leak most times when using a pad since us guys never know what way the pee will go.
 

ltaluv

Est. Contributor
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279
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Diaper Lover, Incontinent
I know....but i have no choice. Suprapubic s are not an option for me.
Am due for 6 to 10 months using a Foley , and possible repeat of Botox but I'm getting tired of these surgeries.
Foley's also aren't so slippery as intermittent caths, so I'm going to use like you said instillagel (lidocaine) with plenty of endosgel, but am not looking forward to it
That's a tough break. I'm sorry that you're headed into a difficult period.

One thing that I've found to be a real lifesaver is lidocaine ointment. This is water soluble, but it's much thicker than gel and doesn't get sticky the way the gel does. My urologist didn't seem familiar with it, and the pharmacy had to hunt for it, but it was worth the hassle. I pull gently on the Foley while pushing on my penis, which brings the outer inch or so of the catheter out of my urethra, and I apply the ointment to that as well as around the urethral opening. It makes sure that the catheter doesn't stick to the outermost part of my urethra as I move, and it numbs the irritation at the end of my urethra. I reapply it as necessary, but a little goes a long way.

I hope your procedure and/or Botox goes well!
 

ltaluv

Est. Contributor
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279
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Diaper Lover, Incontinent
So, now you've got about 40mm of the end of a catheter sticking into your bladder (15mm of inflated balloon plus the 25mm extra). Your bladder amounts to a somewhat conical organ, where the upper part collapses on top of the lower part, and this catheter is poking straight up into the middle. The vast majority of the time, it just pushes the catheter over to the side as it collapses. Except when it doesn't - bladder perforation is a rare, but life-threatening, complication of catheterization. Assuming that doesn't happen, your bladder is mostly collapsed except for the urine trapped below the level of the holes, which is probably of no real consequence. Your bladder wall gets pushed against the eyelets of the catheter, and can basically get squeezed slightly into the holes. As you move and the catheter works in and out slightly, you're at risk for scraping off small areas of the bladder lining.

If you do this, please be prepared to seek medical attention if you find blood oozing out with the urine, and get emergency treatment if you develop a fever or severe abdominal pain. If you don't have the keys with you, be prepared for them to bring in somebody to cut the chastity device off of you. Embarrassing, perhaps, but generally preferable to dying.

These scenarios probably won't happen, but it would be foolish to go into this without knowing what the risks are.

I'm not intending to be critical. It's your body, after all, and you don't need my permission to do what you like with it. I simply feel it's important to make informed choices in what is potentially a high-risk activity, so I want to point out some of the potential downsides.
 

HoganBunny

ADISC Moderator
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Do NOT post medically risky suggestions! Especially since the OP is asking about how IC progresses, not advice on medical procedures!
 

bounduptoplease

Moderated
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Diaper Lover, Other
Do NOT post medically risky suggestions! Especially since the OP is asking about how IC progresses, not advice on medical procedures!

Got it, I did ask in an earlier post if my post was appropriate and in the correct place and got not reply so assumed all was in order, I think I have got the message over so will not continue any further.
 

winterheart01

Est. Contributor
Messages
284
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Adult Baby, Diaper Lover, Babyfur, Diaperfur, Incontinent
That's a tough break. I'm sorry that you're headed into a difficult period.

One thing that I've found to be a real lifesaver is lidocaine ointment. This is water soluble, but it's much thicker than gel and doesn't get sticky the way the gel does. My urologist didn't seem familiar with it, and the pharmacy had to hunt for it, but it was worth the hassle. I pull gently on the Foley while pushing on my penis, which brings the outer inch or so of the catheter out of my urethra, and I apply the ointment to that as well as around the urethral opening. It makes sure that the catheter doesn't stick to the outermost part of my urethra as I move, and it numbs the irritation at the end of my urethra. I reapply it as necessary, but a little goes a long way.

I hope your procedure and/or Botox goes well!
Well, i got home from the surgery yesterday, the bladder neck was clean so they didn't need to cut there, botox is injected, takes a couple of weeks to work. So because of the high spasms and frequent urges they allowed to keep the catheter in for a week. I need to return to the hospital next tuesday to have it removed and then let it rest for a while, will be forced to wear padding for the time though. Then they will do a new urodynamics test to see the effect. After that the long term catheterisation begins.
For now I slept properly for the first time in ages, yes it irritates when walking, I have to walk slower than normal. But when sitting or sleeping I feel nothing at all.
I do hope that this decreases a little when wearing those for longer periods.
I had no blood when I was discharged, everything is kept very clean, I wash the entire genital area with hibiscrub (clorhexidine surgical soap) and disinfect the end of the catheter like you descibed earlier. I do notice that sometimes a clear slimey product exts the urethra, most likely prostatic fluid as it is not smelly, clear and there is no pain that could indicate UTI.
 

ltaluv

Est. Contributor
Messages
279
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Diaper Lover, Incontinent
I'm glad to hear that the catheter is doing ok. The irritation subsides fairly quickly, but for me it never quite went away completely. I still had the occasional trip to the bathroom to adjust and lubricate the catheter where it exited my urethra.

My biggest problem when I was cathed for several weeks was finding a good way to keep it fixed to my leg so it didn't get pulled on when I walked. The stick-on pads (Stat-Lock) never seemed to want to stay in place for more than a couple of days, and the bag always wanted to slide down my thigh. I ended up using a velcro leg strap to hold the end of the catheter, and putting the bag on my lower leg where it didn't slide as much. They make extension tubes that let you put the bag farther from the end of the catheter. It was not completely optimal, but I got the catheter out so I didn't keep working on solutions.
 

winterheart01

Est. Contributor
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284
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Adult Baby, Diaper Lover, Babyfur, Diaperfur, Incontinent
I'm glad to hear that the catheter is doing ok. The irritation subsides fairly quickly, but for me it never quite went away completely. I still had the occasional trip to the bathroom to adjust and lubricate the catheter where it exited my urethra.

My biggest problem when I was cathed for several weeks was finding a good way to keep it fixed to my leg so it didn't get pulled on when I walked. The stick-on pads (Stat-Lock) never seemed to want to stay in place for more than a couple of days, and the bag always wanted to slide down my thigh. I ended up using a velcro leg strap to hold the end of the catheter, and putting the bag on my lower leg where it didn't slide as much. They make extension tubes that let you put the bag farther from the end of the catheter. It was not completely optimal, but I got the catheter out so I didn't keep working on solutions.
Yup, I asked them t put one of those velro strips on me and they didn't even know how to put it on lol.
They got it eventually. And I do have the same setup, bag on lower leg, with me it doesn't slip.
For the other caths I ordered the ugo catheter strap, also same thing, but the non slip side against the skin really helps too.
 
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