Cystoscopy with hydrodistention

Ask your doctor it's an easy script to right and I have never found a pharnacty not to have it in stock. Silicone coated in silver is the cats meow bodý heat allows it to conform to the urethra and silver rejects microscopic organisms from calling it home , lowers Foley acquired infection rate AND prevents crusting of urinary acids into crysrtals , they are also naturally the most expensive Foley made , not unusual to see them for $100's of dollars , it makes me laugh when the t talk about innovating and such , it's a straw a round tube just like at McDonadlds wthout the sharp edges ( lol)


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ltaluv said:

My catheter is back in. The pain this afternoon just kept ramping up until it wasn't manageable, not to mention four different accidents through the afternoon. I switched to a silicone catheter instead of silicone-coated latex, so maybe it'll cause me less trouble.

I still need to find some lidocaine ointment.

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Now that I'm thinking of it, there IS yet another option. There is a product which works very closely to the same as lidocane ointment. You can buy it online too, no prescription. And I'd bet many adult sex shops also carry it too (or something similar. If you can get over the embarrasement of asking them for a tube, you could potentially buy it today.

It's called "anal ease". Its a thicker water based lubricant, that also has a numbing effect (and a cherry scent too). This stuff is already intended for use inside a um, "body opening", so there's no worry using on a catheter instead. (Don't judge, I used to be very open with my sexual exploration, and before I found lidocane ointment I had that stuff on hand. With a painful catheter in place too, I figured it couldn't hurt to try, and it worked).

All I'm saying is if it can relieve catheter pain, try not to care what product it is, or what it's intended purpose is supposed to be. It jxoes at least work somewhat ok. Not as good as prescribed lidocane ointment, but good enough.

"Embarrassment of asking for a tube?" LOL - I'm switching back and forth between diapers and catheters, and I don't think asking for some anal lube is going to be more embarrassing than that.

And again, thank you for the suggestion. I'll still try to get the lidocaine ointment, but something over the counter is a good problem silver in the meantime. Who knows, maybe my wife will like the cherry scent!

Talked with my urologist this afternoon. She's not sure why I'm hurting so much, because my bladder showed few signs of inflammation and had a normal capacity when she filled it under anesthesia. She's written me a prescription for more pain meds, and when I expressed concern about getting flagged as a drug seeker and ending up unable to get pain management when I'm hurting even worse, she assured me that she's not worried about that at all.

She wants me to keep the catheter in for a couple of weeks, and we'll see how the pain goes. I hope it improves, because if it gets worse it's going to reach the point of being debilitating.

This whole thing is so incredibly frustrating.

I feel you brother , I have on very good authority been told you don't want to know this kind of pain , no matter what you think you have gone through . When i found my pain manager it was entirely twists of fate or coin tosses or something because i had been labeled a drug seeker by a jackass D.O and had him liberaly splash nasty comments through out my medical records and out of about 30,000 pages of records there were just 4 pages that really offended me , this new pain managers office wanted a true accurate complte medical record a month ahead of your first visit , so i shipped them everything except those random 4 pages , the doctor said it was weird she would be reading a page go to the next one and it was different , so she started looking at page # 's , asked me if i had any idea what happened i said yes they were scandolous lies ,that were patently false and i had them in my pocket she was welcome to them but i didnt want to be excluded without her at least meeting me the actual patient, so she said you were going to lie ? I said no i was going to let you meet me before being faced with this negative crap and tried to hand the pages to her , she said if there lies that bothered you enough to read 30,000 pages and only get offeded at those they were not "true accurate or complete records" she didnt even want to see them .
And doctors who I have had knock down drag out fights with and thought I was an ass hole, have asked her a million times "what did you do to that guy to make him so loyal" she says she doesnt know but thinks it's because we respect each other , anyway that was 10 years ago and originally I was discriminated against for not having a dedicated pain manager , I still get discriminated against but this time it's the other side of the coin for having one, i get my primary care from a homeless walk in clinic because they cant turn me away, although my out ofvtown Dr's are having a real problem with what I go through to get care , one of them asked who my neurologist was I said I don't have one , they said I am going to find a good one for you if I have to twist ever arm in town , they said dieing from a rare neuromuscular disease you should be able to have somebody follow you , even if it's only once a year something , that's the anarchy of medicine today fighting to get care .but having someone in your corner even if it yourself keeps you from getting overrun, a majority of pain patients are getting sub standard care because they are being confused with the street epidemic , even pain Docs are saying that? The government is out of control and it's not looking like that's gonna change anytime soon.

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ltaluv said:

"Embarrassment of asking for a tube?" LOL - I'm switching back and forth between diapers and catheters, and I don't think asking for some anal lube is going to be more embarrassing than that.

And again, thank you for the suggestion. I'll still try to get the lidocaine ointment, but something over the counter is a good problem silver in the meantime. Who knows, maybe my wife will like the cherry scent!

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I've been constantly surprised by how many people, even just here, are deathly afraid of anyone finding out they like diapers, even when they are needed too. I've been even more surprised to see homophobics here who will lash out at anything even remotely close to gay sexuality, whether there's good intention behind it or not.

You'd also be surprised by how many "vanilla" people are willing to subject themselves to great pain, just to avoid what in reality can be a convenience (diapers).

And being labeled a junkie just because you want to live with a little less pain. Yeah, I've been there too. It seems the world is one really messed up place, filled with people doing stuff that makes no sense at all. I feel for you, and for us all.

Been suffering from some sort of UT problem for nearly 5 months now. Pills of various sorts haven't done a damned thing to fix the situation, so my Urologist scheduled this procedure for me, too.
And I utterly chickened-out... *Plucka-plucka-plucka*...
Nope, sorry...
I have had a, well, horrendous doesn't even do justice to my history/experiences, with any and all things related to my genitalia/urinary-tract. I would seriously rather die, than have that part of my anatomy messed with again.
It will either fix itself, or I'll just check-out of this life entirely. ::draws the line in the proverbial sand::

B.

Never forget that it's your body, and it's your right to say what you will and won't do. It's not chickening out; it's making your own medical decision.

I'm actually recovering well from my hydrodistention. The catheter won't come out for another week and a half (being catheterized afterwards is NOT normal, but I have a rather complex medical situation that tends to throw a wrench into all sorts of things), but it's at a point that I don't think dealing with the catheter is any worse than dealing with diapers, and my pain level is down to the point that I'm taking a single pill at a time instead of two, and I'm only taking them a couple of times a day and still tapering down.

If I get UTI from the catheter, I may change my tune about it being as easy to deal with as diapers. Then again, if I were to get a bad diaper rash, I'd perhaps think that the catheter was better. It's nice to know that I can get used to an indwelling catheter, because it gives me more options down the road for managing myincontinence.

ltaluv said:

Never forget that it's your body, and it's your right to say what you will and won't do. It's not chickening out; it's making your own medical decision.

I'm actually recovering well from my hydrodistention. The catheter won't come out for another week and a half (being catheterized afterwards is NOT normal, but I have a rather complex medical situation that tends to throw a wrench into all sorts of things), but it's at a point that I don't think dealing with the catheter is any worse than dealing with diapers, and my pain level is down to the point that I'm taking a single pill at a time instead of two, and I'm only taking them a couple of times a day and still tapering down.

If I get UTI from the catheter, I may change my tune about it being as easy to deal with as diapers. Then again, if I were to get a bad diaper rash, I'd perhaps think that the catheter was better. It's nice to know that I can get used to an indwelling catheter, because it gives me more options down the road for managing myincontinence.

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Don't forget to drink lots of cranberry juice, or take cranberry pills. I always do this when I have a urinary surgery and/or catheter in place. I NEVER get UTIs either.

Unfortunately, most people with interstitial cystitis (the "other" IC) can't tolerate cranberry juice, or anything else that makes the urine acidic. Even sodas and coffee can start an IC flare. I do ok with coffee and sodas in moderation, but drinking cranberry juice will give me a week's worth of severe bladder pain.

Yeah our "IC" is annoying, your IC is life altering
Diapers don't begin to compensate for the pain and discomfort on its best day.

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When you come down to it, it all has the potential to be life altering. How many people become social recluses due to incontinence and embarrassment about wearing diapers and maybe having a leak?

My diagnosis of interstitial cystitis is in some doubt. The traditional view says that if you have urgency and incontinence it's overactive bladder, and if you have urgency and pain it's interstitial cystitis. I have urgency, incontinence, and pain. It's possible I have both, but I have no definitive diagnosis.

My urologist is pushing me a bit toward the Interstim, but I need yearly MRIs of my liver to screen for bike duct cancer so I'm not really a good candidate for it. My bladder problems are really the sideshow anyway; the main event of my health stuff is liver disease, which will eventually require a transplant. So I try to keep my bladder problems in perspective.

To only thing I can really control in all this is how I react to my health issues. As long as i keep my head screwed on straight, I'm doing ok.

I feel you ,all to well , I have chronic pain but due to my disease I can't have surgery unless its life or death because of genetic hickup that makes me allergic and react badly ( fataly) to anesthesia theres a boat load of stuff wrong with me , that are all catch 22 in medicine i literaly have to sit around and do as little as possible to stay alive , my IC is a joke in the greater scheme of life, for me in a wheelchair no one sees my ass,no matter what diaper I wear , there is no sound when you don't move . I find the best policy like you say is perspective , so I grin like an idiot and tell lots of jokes , leave am laughing even if your crying on the inside .

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Tetra said:

I feel you ,all to well , I have chronic pain but due to my disease I can't have surgery unless its life or death because of genetic hickup that makes me allergic and react badly ( fataly) to anesthesia theres a boat load of stuff wrong with me , that are all catch 22 in medicine i literaly have to sit around and do as little as possible to stay alive , my IC is a joke in the greater scheme of life, for me in a wheelchair no one sees my ass,no matter what diaper I wear , there is no sound when you don't move . I find the best policy like you say is perspective , so I grin like an idiot and tell lots of jokes , leave am laughing even if your crying on the inside .

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Oh and slso the interstim is not really readY For ptime time , slowmo had one ask him .

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ltaluv said:

When you come down to it, it all has the potential to be life altering. How many people become social recluses due to incontinence and embarrassment about wearing diapers and maybe having a leak?

My diagnosis of interstitial cystitis is in some doubt. The traditional view says that if you have urgency and incontinence it's overactive bladder, and if you have urgency and pain it's interstitial cystitis. I have urgency, incontinence, and pain. It's possible I have both, but I have no definitive diagnosis.

My urologist is pushing me a bit toward the Interstim, but I need yearly MRIs of my liver to screen for bike duct cancer so I'm not really a good candidate for it. My bladder problems are really the sideshow anyway; the main event of my health stuff is liver disease, which will eventually require a transplant. So I try to keep my bladder problems in perspective.

To only thing I can really control in all this is how I react to my health issues. As long as i keep my head screwed on straight, I'm doing ok.

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Be EXTREMELY careful with interstim. Their numbers are BS too. 80% of people have a 50% improvement is a direct translation to a 40% success rate with interstim that only half improves your condition. It is NOT the cure-all it's advertised to be.

I had it done, and the lead was placed exactly on my sacral nerve. My trial perood of FOUR weeks was excruciatingly painful. And when they finally removed it, I realized it had literally overloaded and fried my sacral nerve. My painful urges were every bit as bad as before, AND now my neurogenic dyssynergia (which made it near impossible to pee) was ten times worse.

Interstim was a horrible failure for me. It left me worse than what I started with, and I had to go through two full blown surgeries to have it done. That has since been followed by EIGHT more surgeries to undo the damage.

ANYONE thinking of having this done, needs to seriously question if they should really have it done.

I have something like a 50% risk of getting bile duct cancer. If it's caught early with an MRI, I can get a liver transplant and at least have a chance of surviving - if we assume that it's a 50% chance of surviving the transplant and having it cure the cancer, then I only have a 25% risk of dying of the cancer.

With an Interstim, I can't get an MRI, which is the best way to detect the cancer early. Thus I go from a 25% risk of dying of bile duct cancer to a 50% risk. All for an implant with a 40% success rate. Not a good gamble any way you look at it.

I took out my catheter this morning. I'd done a bladder instillation (Marcaine, sodium bicarbonate, heparin, and gentamicin into my bladder) and felt great, so I took a gamble and removed the Foley. I should have worn a diaper, but I felt so good I didn't even do that.

I ended up having several bouts of very painful, crampy bladder spasms. I upped my Vicodin dosage, which helped. I didn't end up leaking, but it was a close thing. I'll probably just wear a diaper tomorrow so I don't have to worry about it.

It's frustrating to still have this much pain two weeks after my hydrodistention. I see my urologist next week, so I'll discuss it with her.

In the meantime, I have more Foley catheter, so I can always put another one in. I had some bladder spasms with the Foley in place, but not anywhere near the level of pain I had today. I'd rather not have the Foley, though; it's a poor long term solution to the pain and incontinence, and ads to my infection risk. I can also go back to diapers - I've been wearing 24/7 for a couple of months, so I'm very used to them. I just worry that diapers don't address the pain issue, while a catheter does.

Maybe I just need to get a suprapubic catheter and resolve to live with it.

ltaluv said:

I took out my catheter this morning. I'd done a bladder instillation (Marcaine, sodium bicarbonate, heparin, and gentamicin into my bladder) and felt great, so I took a gamble and removed the Foley. I should have worn a diaper, but I felt so good I didn't even do that.

I ended up having several bouts of very painful, crampy bladder spasms. I upped my Vicodin dosage, which helped. I didn't end up leaking, but it was a close thing. I'll probably just wear a diaper tomorrow so I don't have to worry about it.

It's frustrating to still have this much pain two weeks after my hydrodistention. I see my urologist next week, so I'll discuss it with her.

In the meantime, I have more Foley catheter, so I can always put another one in. I had some bladder spasms with the Foley in place, but not anywhere near the level of pain I had today. I'd rather not have the Foley, though; it's a poor long term solution to the pain and incontinence, and ads to my infection risk. I can also go back to diapers - I've been wearing 24/7 for a couple of months, so I'm very used to them. I just worry that diapers don't address the pain issue, while a catheter does.

Maybe I just need to get a suprapubic catheter and resolve to live with it.

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When my urologist put in a suprapubic, he quite literally stabbed my abdomen with a scalpel, then quickly stuck a tube in the hole. And it truly did feel like I was stabbed, with the knife left there- for nearly SIX MONTHS!

Seriously, if there is any chance of getting your urethra to stay open (without a catheter), then there's no need for a second pee hole that would work just the same- but with a whole new pain. I've had the same painful bladder urge problems as you for decades. Catheters always brought me relief by preventing my bladder from filling up. Except after the first decade I couldn't stand catheters any more.

IF you can get your urethra opened up enough to always drain, then diapers are going to be about ten thousand times more comfortable than always needing catheters, especially when it's needing a catheter via a suprapubic pee hole. Not to mention, suprapubics are more prone to infection than your urethra.

Please trust me on this one. You need your bladder to not fill up. You don't need another pee hole to acomplish this either.

Italuv how are you feeling and doing !

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I'm having a rough time of it. The urgency and spasms are still very painful, and I'm still reluctant to take enough of the painkillers the doctor gave me to keep the pain at bay. I have to work if I want to get paid, and if I'm loopy from narcotics it's going to be hard to keep my job for long. I'm having accidents most days, and more than one a day isn't uncommon. Some of them are because the urgency is so painful that it's not worth trying to hold it in, but most of them are because the muscle contractions are strong enough that there's no possible way I could hold it in. If I can get to the bathroom at the first sign of feeling like I need to go I can do OK, but if I'm not by a restroom, or if I'm in the middle of something that I can't put down, then it pretty quickly turns into an unstoppable urge.

My urologist appointment is the day after tomorrow, so I'll see then where we go from here.