incapacitating pain from bladder spasms - no meds working

For a week I've been having to put up with horrendous spasms starting in my bladder that spread in seconds to my knees, whole body, arms, and jaw. They'd have me on my knees if I wasn't holding onto something. I shut my eyes and concentrate on breathing. The spasms are triggered by the catheter put in my bladder during a failed vesicovaginal fistula surgery that was done too soon after a lap hysterectomy along with reconnecting my colon and repairing a large hernia. They weren't able to close the entire 5 cm hole in the bladder. (Can that actually close by itself?) I saw the surgeon yesterday, got another Rx for the same stuff, just a different name, I had already tried. I never even hoped to get the cath out this soon.

I've been given all sorts of meds that don't even touch the spasms: Detrol, Pyridium, Toviaz, Percocet, Norco, MS contin, lidocaine gel, Valium, and more. The pains are getting worse and more frequent - every time I stand up, sit down, lean on a counter. Sitting is awful. Making myself a little soup is torture, and then I don't feel like eating. The only thing that helps is to lie down on my big heating pad and not move. I don't know how I'm going to make it to the cystogram next week. I called the office today, but it was closed. I could call the resident-on-call, but s/he wouldn't know my case, and I've already all the usual treatments. I can get a message to my surgeon through the hospital, but she hasn't come up with anything helpful so far. I got the MS contin from my regular doc today, but it didn't do anything. I couldn't even tell I had taken it.

I thought about going to an ER, but what could they do other than an IV med for a little while? I have to get through trying to recover enough to have the cath taken out. I will need open surgery sometime down the road, but I can't tolerate this pain much longer.

The thing that will work for you is B&) suppositories, belladonna and opium, a brown suppository and it works wonders for spasms, I had with caths and interstitial cystitis.  If you can get a urologist to order them, the pharmacy may have to order them, very controlled, but THEY WORK

   GOOD LUCK

Well Once during a hospital stay I kept having bladder spasms and they could not get them under control at all unless they gave me volume through the IV, turned out I was allergic to dilaudid which they found out after they put in a pic line.
I think if you cannot take the pain the bonus of going to the ER is that they can normally get your pain under control with the same meds but IV versions. I myself cannot stand going to the ER, but I will tell you if I was as feeling as miserable as it sounds like you are I would possibly go to at least get ahead of the pain with the IV meds, then maybe back at home you can keep your pain under control with the oral meds. One thing I do know is that the key to pain control is staying ahead of it and once you get to where it sounds like your at you may need the help to get back ahead. Big hugs to you, I hope you find something that works!!

Thanks to all for the suggestions. It's too bad I have company with this pain.

I couldn't answer sooner because I caught what seemed like a mild cold from my son. I haven't been so sick and miserable that I can remember - 4 days and finally able to get out of bed. I went to the ER where I got fluid for dehydration, dilaudid for pain and Zofran for nausea and dry heaves. Of course they sent me home after a few hours and I was still horribly sick, not eating or drinking.

To add to the laundry list of meds: MS contin didn't do anything. I suspect I'm one of those people who are resistant or something, because they had to keep giving me propofol until I was out when I had the fistula surgery and the morphine spinal didn't work.

I am now trying an Oxytrol (oxybutynin) patch, which has lessened the spasms very slightly. Is the patch available as a generic? 8 of name brand was $95.

I tried Donnatal (phenobarb and belladonna) with no relief. Not exactly a B&O. I'll mention it to my surgeon when I go Wed for another cystogram. I'm expecting her to say I have to have a cath for a lot longer, probably months while I heal, and then an open surgery to finish fixing the bladder, and more caths. My tissues are in bad shape, worst my uro and gyne/uro have ever seen. They keep telling me to eat well, but I am too nauseous to eat at all, even on Zofran.

I wish I could sit in my little hot tub, but that's not going to be OK'd.

$5K in insurance out of pocket starts tomorrow.

I wouldn't mind the bag on my leg if something could be done for the 24/7 pain. 5 major surgeries, not all successful, in 6 months is depressing. I'll ask for something for that Wed too.

Never heard of ditropan being on a patch, especially since I was on it constantly for over 2 years. The stuff I was on was little tiny pills, I took 4-6 per day, and they cost around 4-6 bucks a month for the prescription.

The bad part, if one is on it long term, is that it can make your bladder "lazy", and some people can face short and long term incontinence issues coming off the med (again this is only for those long term). In my case, it didn't matter, because my bladder was so fried from radiation, that it was never going to be healed, and eventually was by-passed in the end of 2010 with the ileal conduit surgery.

It can dehydrate you, but its main purpose is to relax the bladder walls, discouraging spasms. All I can say its that it sometimes helped, but never eliminated the problem for me. Long term catheter use really aggervates the entire bladder spasm issue, because the bladder knows there is a foreign object in it, and its constantly trying to expel the intruder. Plus, on the inside end of the catheter, there is a balloon of sorts, inflated with saline, which holds the catheter in place, along with the inlet tip of the catheter. The constant rubbing back and forth of that end of the catheter is a constant irratant to the bladder walls, thus increasing the pain, and can in fact cause minimal bleeding and ulcers.

David in SC

Alcie, if you haven't yet I suggest going to see a urologist ASAP. They are the experts when it comes to a person's plumbing and have reason to keep up with all the latest treatments and medications related to the urinary tract.

Thanks everyone, for keeping me sane. I had my cystogram today and doc pulled the catheter. I wasn't told if the hole in the bladder is closed or not, only to see what happens. I'm still having spasms, but they are nothing like the ones before. I'm on antibiotics but no pain meds except tramadol for fibro.

Three things are worrisome. First, the cultures taken Saturday got thrown out. I'll have to get an order from my regular doc and get them re-done somewhere else. Next, I told the doc about the white discharge that I think is yeast infection, but doc said not to take anything for it. Third, one of the papers said I can't have pain meds ever at that hospital unless I bring in a treatment plan from somewhere else. What does one do if there's another emergency that needs treatment at that hospital because that's where the surgery was done? Or what happens if I need another surgery there?

I think I would be talking to some of your doctors about the paper saying no pain meds unless.......thing. Try to get a plan in place before you may really need it. The other thing you might consider doing is talking to an attorney about that paper and see if it is even legal and/or what your legal rights are.

After all it is not like you are one of those people who show up at the hospital all the time looking for pain meds due to some condition that there is never any indication of.

If all else fails refuse to be admitted at that hospital for any reason. If admitted to the ER there for some reason they are under law to have you transferred to another facility if that is your wish once they have stabilized your condition enough for transport.

Thanks for sharing an update...I sure hope you can find another Dr. ASAP as this one doesn't sound very capable!...

If you could please state where you saw this new law stating that seniors cannot get pain medications? I have never heard of this...And what age are you saying this is happening to?

There are DEA laws that affect every single Dr. who writes prescriptions for controlled substances in that they have to have documentation supporting their reasons to give this to the patient. But that is nothing new and is for everyone...

So, we would all like to look over this as unfortunately we have seen on the boards many times that some patients have been given bogus information by their Drs. to pass them off to another Dr. to prescribe pain meds....

In regards to your PM, this is a good idea for everyone to have a note from them to show any ER/Urgent Care about any medications that you are on and that you are given the ok to be prescribed if needed. I recommend always contacting one's PM if they are going to the ER so that they can speak with the Drs. there if needed. (Barring a true life/death emergency to where someone is not conscious)

Been doing a little reading and have seen where some states have enacted policies/laws/regulations that are requiring doctors to have a written treatment plan drawn up before administering pain medication to anyone. I also noted various requirements as to when these treatment plans must be reviews and updated.

I also seem to recall reading that the federal govt was going to be requiring the same. Given that the New Year has just started that may now be in effect.

The purpose of this is supposedly to justify the use of narcotic pain medications and to stop doctors from just giving people pain meds to shut them up and help curtail prescription drug abuse and seekers.

If this is what is behind the paper Alcie was given it sounds like the hospital is passing the buck and not wanting to take any responsibility for pain management given that she is a long term pain patient. I honestly can't see this being targeted at only seniors as I would think that violate all kind of state and federal discrimination laws.

The treatment plans go way above what doctors have been required to do in the past. In the past a typical patient chart would be more of a listing of what a person has been seen for, tests, treatments, and other medical information such as surgeries, allergies,etc.

Now doctors are going to basically have to write a detailed report detailing what medications they have prescribed but explaining why they prescribed it and what tests and exams and the results of those procedures that justify the prescribing of the narcotic. They are also going to have to outline prognosis of the condition(s) among other things.

In a way imagine the difference between writing a 1 paragraph summary of a book and writing a 4 page report on it.