incontinent--please help!

[keepcalmcarryon]

the following is a bit graphic.
Several months ago I had a ureteric stent put in, since my pelvic tumor was cutting off the ureter and the kidney functioned only about 8%.

Recently, I had some trouble with the stent–a couple of times bedwetting, sore, etc. Since my kidney only functions at about 8%, I asked about having it removed. While I was just getting my anesthesia for the stent change, the urologic surgeon briefly discussed the stent removal. He said its ok to try; if not, it can be put back in (I had wondered if another renal scan should be done to see if the kidney had recovered, but apparently no one thought that it had.)

The main potential problem with the stent removal was infection. I never had a fever. Also, my urine was tested after the stent was removed and no infection was found.

However, last Sunday (5 days after stent removal), I was incontinent. I never felt it happen, I just woke up to a wet bed (despite wearing heavy-duty pads). Later in the day, I got up from the car and instantly urinated. At home, I couldn't make it from the kitchen table to the bathroom without wetting.

Wednesday night I wet the bed, twice.

Then today (Sunday), I noticed my urine stream started involuntarily when I got into the bathroom. Later, I just got up from the sofa and was instantly wet. Note that I was still wearing heavy duty pads each time but they were not sufficient. Also, there was blood on my pad numerous times, although no blood was visible in the toilet. I called the urologist's office a couple times about my symptoms. They said they were normal (wish they'd given me a handout with a list of normal symptoms) and to call back if they persisted.

Also, since I am on pain pills, I have trouble with constipation. I took stool softener the last few days and today slow diarrhea just came out on its own (fortunately onto the pads!)

Although my CT scan 3 weeks ago was normal, I am afraid the pelvic tumor has recovered from my proton treatment and my trial drug and is now invading the bladder or kidney or something. On Wednesday, I see the rad. onc. for my 3 month followup from my proton therapy.He will want to do a MRI but as I am getting too claustrophobic for one and I think a PET will be more useful to see if the pelvic tumor is still active.

I'm also going to try to get some useful info from the urologists office--I want to see a urologist, NOT a urologic surgeon.

Has anybody had experience with this? are there drugs that work for incontinence? would Kegals help?

thanks!

[waw4]

I don't have any experience to offer, but like you, I would find all this very distressing.

My thoughts would be to make an appointment with your urologist as soon as possible as your symptoms were delayed in onset and now include blood.

Are you seeing a kidney specialist? If not, perhaps get a referral to one, as I thought 10-to-15% functioning was the critical lower level for kidneys.

Seems like you could let the radiologist know you would prefer a CT scan if possible, but I would leave the final choice of diagnostic tool up to him.

Don't know what could be causing your incontinence. Sounds like movement may trigger it. You are probably already doing this, but I would try to go more frequently while I was up - say every hour or so - whether I felt like I needed to or not.

Hope they can pin this down and do something for you very soon!

[keepcalmcarryon]

Many thanks for your reply. I think you are right that it is triggered by movement; I never would have thought of that. I have an email in to my trial onc's nurse practitioner to ask her to contact the urologist--i don't have much luck with them. (The oncology staff are wonderful very helpful and patient-oriented. The urologic staff are the opposite.)
Thanks again, and the best of luck to you.

[MrPleistocene]

Hi there,

I'm going through some of this and can recommend some second opinions Dr.s too if you are interested.Here is a quick history (much less involved and cumbersome than your predicament, but similar)

I was peeing often a year ago, Some times it was every 5 minutes for the better part of an hour. I pee when I stand up, at least a little every time. Off to a urologist. He does a few tests and looks at my scans and I've got hydronephrosis. He slaps in some stints. Now I am peeing a lot still and the pain has increased a lot. I go to a urologist that deals with more cancer patients.

There are tests and a new set of stints place and more tests. They aren't really working much, but are irritating my already heavily radiated bladder causing it to spasm continuously.

Then my creatinine level began to spike. and I started peeing blood. Not blood in the urine, but quarter and silver dollar sized chunks of blood.

That led to bilateral nephrostomies and hyperbaric oxygen treatment. With the nephrostomies, my creatinine dropped and my hemorrhagic cystitis was cured.

The nephostomies are a brutal inconvenience, but I would look into hyperbarrics.

Our Urologist had settled on this as a full time lifestyle. I hope to have a lot more life, so we went to check out options.

I currently have two stints on each side, and boy are they annoying, but seem to be getting better5 with time. I have my nephrostomies capped to see if the double stints are working.

There are still options beyond this and this my be way off your treatment course, but I just wanted you to see my laundry list of Kidney, Ureter, Bladder track.

Remember that radiation effects can build in the body for years. PM me if you want specifics.

[dianne052506]

I've had trouble over the last 5 years with mild incontinence, and have seen a urologist a couple of times. Usually I have a UTI going, which he treats, but he always recommends Kegel exercises - not every now and then but throughout the day- at least 30 times a day! I'm not a big believer in the exercises - I personally think they were invented by a man looking for better sex - but the doc did say to especially do them right before a movement that would typically cause some leakage, like bending over, standing after sitting a while, etc. Not sure if that is of any use with the stents and other issues, but I did notice that the exercise right before movement helped me.
Best wishes,
Dianne