Cystoscopy with hydrodistention

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ltaluv said:
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.

You know you keep answering your own question, right?

-The urges are extremely painful.
-Trying to hold it anyways makes it worse.
-And even with holding it, you still tend to leak anyways.
-There are also times when you can't hold it at all, and end up fully using your diaper.
-Lastly, those few times when you just give in to using your diaper right away, it is much less painful.

It's not difficult to extrapolate your currently best solution from this. So why keep fighting what you already know is inevitable, and also results in your best situation anyways?
 
Italic do not be afraid of the medication, yes there are a lot of addicts running around nut they are conflating the addicts and actual pain patients , it's a problem that really doesn't exist actual pain patients useing pain medication aren't addicts, further the pain patient that follows directions by there doctor have a total conversion to addicted/abusing of less than 0.08 % over all prescriptions written , I know this because A. I tried to save an addicted patient from themselves and B. I myself am a palliatife pain management now myself for 13 years , and my doc had to Moreless beat it thru my head to stop making my death harder than it needs to be , she's there to ease my suffering well i was making it harder because as i told her "i didnt want to do to my friends what was done to me" .
So get this self abuse "take it like a man" idea out of your head use your medication and your diapers like they should be a crutch to get you thru the worst and hopefully back to were you want to be.i know you don't know Slomo or I other than as screen names but neither of us would advocate to help someone do the wrong thing , as we both are very experienced as both patients and me as a former proffesional rescuer/ carer , we want good things for you and have no finacial motivation good or bad in your sickness or wellness .

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Oooh, another good point about pain. I once had a doctor explain it to me that in the short term, pain is a really good thing. This is so we will stop doing what ever is causing us damage.

However, long term and chronic or reoccuring pain is extremely bad. This tightens our muscles which causes more tension, raises our blood pressure, and well just does a whole slew of other things to our bodies we need to try and avoid. Long term pain absolutely will make things worse for us, and even delay any potential healing.

The idea of just sucking it up and bearing that pain is never a good idea. So take those pain meds when you need them, and do whatever you need to in order to permanantly alleviate that pain too (within the law anyways).
 
Yesterday was better, but not perfect. I did my usual bladder instillation this morning (Marcaine, heparin, gentamicin, and sodium bicarbonate liquids, about 50 ml total put directly into my bladder through a catheter), which numbs things for a while. I had a little bit of urgency later in the morning, but it's usually not bad while I've got the instillation meds in. I drained them out in the late morning, then around noon put 20 ml of lidocaine jelly into my urethra and bladder. That kept things good until later afternoon, when I took some Vicodin. I had one bout of painful urgency, resulting in an accident, around 9:00 in the evening.

I think a lot of my reluctance to take pain meds is that I'm worried that I'll find they work well, then get cut off by my doctor, either because she feels like I've been on them long enough, or because she retires and I get handed off to someone else who believes the rhetoric that ibuprofin works just as well as Vicodin on chronic pain. Somehow, finding something that works and then having it taken away seems worse than not having anything that works in the first place - hardly logical, but it's an emotional response instead of a logical one.

I'm not particularly worried about getting addicted, mostly because I've never gotten any sort of euphoria or high from taking narcotics. All they've ever done is make me hurt less and put me to sleep (in higher doses, anyway). I've done some reading, and it looks like not everyone can even get high on Vicodin, and those that do use much higher doses than the fairly moderate dose I take. I suppose I'm a little concerned about tolerance and having to switch meds, although I don't know how long that takes.

A lot of my fear of pain killers revolves around being flagged as a drug seeker. I've been in the ER in severe pain because of biliary obstruction, and I'm terrified of getting dismissed as a drug seeker and sent home instead of being treated. I've watched that happen to others with chronic pain issues - the current dogma in many pain-management circles is that narcotics don't work any better than NSAIDs for chronic non-cancer pain, and I've had a number of friends told to go home and take an ibuprofin for debilitating pain.
 
There's also your body getting used to the pain killers to where they won't work very good too. I was on vicodin for years, but eventually those pills only worked as good as motrin. I'm now on 5 or 10 mg of oxycodone. Not even my legitimate specialist doctors want to prescribe them for me. Not even right after a surgery. Forget being called a drug seeker, this is like they have a policy of none at all.

I'm like you though, and have never gotten high from taking opiates. (Though I've never abused them and taken too much either). They only reduce my pain level to get me back closer to functioning normal.
 
I had my followup appointment yesterday with the urologist. Short story is that there's nothing visibly wrong with my bladder, and I have a catheter back in indefinitely.

My bladder volume under anesthesia was 350 ml greater than the last time they measured it, about a year and a half ago. There's no sign of inflammation, either visually or in any of the biopsies. My doctor thinks that the main is modulated by the other things going on in my abdomen, in particular nerve reactions to an ongoing biliary obstruction I've been fighting with for over a year. They've done two ERCPs and a cholangioscopy trying to get the scarred duct dilated again, and they haven't been able to get an instrument in to get it open, so it's been backing up, damaging my liver, and causing various symptoms.

I had already had a call in to my gastroenterologist to schedule another attempt to open it up, and on my urologist's suggestion I asked to go somewhere that they have more expertise in doing them. My local area has no real hepatologists, and the number of these procedures that any of the local doctors do in a year can probably be counted in their fingers. I want somebody doing the procedure who does them day in and day out, so that they have the best chance of doing the very difficult part of getting into the duct that needs to be dilated. If that fails, I'm not sure where we'll go - I'm still too healthy to get listed for a liver transplant, so I may just have to live with whatever symptoms occur, including bladder pain and incontinence.

Meanwhile, having the catheter back in is less painful than having it out, since the pain occurs only when my bladder fills. There are of course ongoing issues with urethral discomfort and urgency stemming from the catheter, but they're not as bad as the horrible crampy pain I keep getting when I need to pee.
 
You sound like me if you didn't hafe bad luck you wouldn't have any.


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