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June 30: I called the urologist office the other day as I hadn't heard from them following the urodynamics and the cystoscopy testing. They confirmed what the technicians had told me on the day of the testing.....all appeared to be normal.....so the next step is to wait for the neurologist appointment in August. I'm pretty frustrated and it's causing me a lot of anxiety, because nobody can seem to figure things out and they were just happy to let me be until August to continue dealing with all this. In the meantime, my wife wanted me to get tested for celiac disease as she herself is a celiac patient and that can cause a lot of weird random symptoms (celiac is a gluten intolerance requiring her to eat gluten free, no wheat etc....) so since the urologist wouldn't order the tests, back to the PCP we went for bloodwork for the celiac panel among several other things he later added on such as Lyme etc......the next day he saw he in his office and he wanted to get a urinalysis to test for diabetes insipidous. (Not the same disease as diabetes mellitus, just shares the same first name) but I had the foley in still so I went to the lab and they had ME draw the urine out of the catheter with the sampling port on the catheter tubing.......so I just got a call from him this morning saying that he wanted to see me on Wednesday instead of Thursday this week. I hope that's because he's going on vacation and not because my labwork is all screwed up. In the meantime, she took the foley out Friday night so I have been without the catheter all weekend. Things haven't been too bad, normal frequency of 15ish times per day with the usual accidents/leaks/dribbles. I'm wearing pads/pull-ups/diapers depending on the day and what I have going on. I can usually get away without wearing a full regular diaper but like the security it provides. I'm going back to work tomorrow for a 24 hour shift at the firehouse. I've been doing a lot of longer shifts like 34,38,48 hour shifts so a 24 is a welcome break. Then I'm taking some vacation time. When vacation is over though, I will get all the OT that I missed while I was away so I'll be there for some pretty long stretches, several days at a time which interferes with my sleep cycle because rest is hard to come by at work. All this seems to be worse when I am overtired or over stressed. I usually end up with the foley back in to sleep when I get home because I find I haven't really slept for days on end......

Hang in there PB&J32, they will get to the cause of it I am sure! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

July 3: well, it's been hot as he'll up here in Maine. Temperatures in the high 80's and low 90's so I've been sweating a lot. Which seems like it's decreased the frequency of urination but the drips/leaks/accidents are still there.....pads alone are working but I feel like I'm stretching them a little bit. Seems I should really be in a pull-up,at minimum but it's really too damn hot for pull-ups or diapers so I've been taking my chances on the depend pads.....today is in the low 80's so I'm in a full diaper and the frequency is really back with a vengeance today with lots of small accidents. I'm drinking to stay hydrated but I'm really paying for it. The PCP sent me to a Nephrologist to talk to him about the diabetes insipidous ( not diabetes melitus just shares the first name) it's a problem with the secretion or usage of anti-diuretic hormone (ADH) which causes your kidneys to just flush everything out and not hold onto any fluid. Which could cause frequent urination. That wouldn't explain the incontinence but I can deal with the incontinence if they can figure out the frequency. Anyway, I got into the nephrologist really quickly, I saw him today.....he wasn't convinced that I have diabetes insipidous as I don't have some of the classic signs. But that I definitely have many of the symptoms of overactive bladder. He was really nice and seemed real good. He ordered more labwork.....I already look like an IV drug user as I've had more blood drawn lately than they could possibly ever know what to do with........so more labwork and a 24 hour urine collection regimen is in my near future. This is all grating on my patience. One thing is for sure, though.....the diapers and the Foley catheters haven't let me down yet........and the wife picked me up a bag of depend underwear cause I use them at work, I don't wear regular tape on diapers to work........so that was real nice of her......but I think her patience is really wearing thin with all this too.....she was really hoping this was going to be an open and shut case of diabetes insipidous........oh well....stay diapered everybody and stay cool....and have a happy July 4th!!!!

July 8: here's what's up today......it's been hot up here.....I had a Foley catheter in all through the weekend I was miserable and so she cathed me so I could sleep. When it gets hot out I don't know what happens. I try to stay hydrated but then I pee and pee, and I have leaks,and accidents and I can't seem to stay out of the bathroom. I had the foley in all weekend. It causes some irritation at the tip of my penis where it enters the urethra, it was red and irritated Sunday evening so she took it out to give me a break from it......I'm young and pretty active (32 years old) so I'm on the go all the time, which is the likely cause if the irritation. Anybody have a solution for that?? I don't want to end up,with blisters and sores on the end of my penis inside the opening of the urethra. I'm using 100% silicone Foley catheters too. If anybody can provide an easy solution it would be good. I am keeping the catheter secured to my self with statlock Foley catheter holders, so it's not being pulled by anything, just chafing the urethral opening as I move. It was hot up here the last few days, so it's been hard to stay hydrated without the foley. Been having the usual leaks and small accidents......was outside all day yesterday at a funeral for a good friend of mine and it was better than 85F out, I couldn't get away with a diaper in that kind of heat, thankfully I can get away with just a pad in many cases......by the time I changed that pad though, it smelled like a nursing home patient (stale urine) it was pretty unpleasant....I felt myself have several small accidents, thankfully a pad is still up to the job, but I don't know for how much longer I'll get away with that.

Hello PB&J32, I feel your pain working in the umpteen zillion degree weather, (I'm in Texas) but a firefigher to boot, that's rough... however it is to which point I had an idea (which I've never tried myself, but still) I thought I would share.

While you are on the job, at least...

Perhaps a viable alternative to indwelling catheterization would be a combination of A. penile clamping, B. intermittent catheterization, and C. Abena fixing pants with pad? Clamping, I would think, would be far more comfortable, if not forgettable, than a silicon tube pulling and stretching and enflaming your equipment from the inside out. Combining an intermittent catheter at pre-planned intervals would allow you to expel at your own leisure. The Abena fixing pants worn with an aborbant pad (both sold by XP Medical) would serve solely as a contingency in the event that there was any leakage, plus they would be far more comfortable than a pull-up, especially in the heat of day, given that they are made of 92% cotton.

I like the sound of the fixing pants......as far as intermittent catheterization, I'd have to do it several times an hour because that's how often I go to the bathroom, which is why I use the foleys when things get active. I don't like the idea of the clamp at all......I'd rather have the wife put a catheter in me and be on my way, cause then I can stay out of the bathroom for more than an hour!!

July 12: well, the hot weather continues up here in Maine. I'm enjoying summer and being on vacation from work. My urinary frequency hasn't taken a break however!! Last Wednesday (July 9)was particularly miserable. I couldn't stay out of the bathroom and was in there like 10x between lunch and dinner (1300-1800ish) so my anxiety was up, and I was having my usual number of leaks/drips/accidents, and my anxiety was up, and my patience was short,with the whole family....so my wife finally put the foley in me around dinner time.....within about 2 hours I had put out 400ml into the foley bag. I seem to put out a lot of urine with the foley in. My wife thinks I may be retaining urine. Sometimes at night it's not uncommon for me to put out anywhere from 700-1800 in an overnight 8-9 hours. Many times I'm drinking anything but water and even that I'm regulating the water into 8ounce cups to keep track of my intake. I don't usually drink more than 8 of those in a day, though it has been hot, so I may have had a little more, because I don't want to dehydrate myself......but still,I seem to be putting out ridiculous quantities of urine in the foley. Without the foley, I have no way to measure total amount voided, I just make lots of trips to the bathroom, but those are all small amounts each time.....I don't know and I'm rambling in here.....talked to the nephrologist the other day and he said that what I have is definitely NOT diabetes insipidous because my urine osmolality is 550ish and it would have to be below 100 to be positive for DI, so, nowhere even close.......so were back to the drawing board.......the only things I have going for me right now is Foley catheters and diapers.......Not a great way to live a life at 32 years of age, otherwise healthy and fairly active..........I think the wife has grown pretty tired of all this too.......but she's always been willing to put the foley in when I need her to.......

Saturday July 19: hot weather and symptoms continue. The foley came out last Sunday as my urethra was causing some redness, irritation, and soreness at the opening of my urethra. I went to see another nephrologist and she was convinced that I had diabetes insipidous after my PCP and another Nephrologist had already ruled it out. So she wanted me to go see an endocrinologist and she thought that they would do a water deprivation test. When my PCP heard about that he decided to order the water deprivation test on his own......for the next day.....the day I was supposed to go back to work after being on vaca for 2 weeks. That extended my vaca by a day. The procedure is done as an inpatient procedure where you show up at the hospital and they deprive you of all fluid for 8-12 hours while taking blood and urine every hour or two. They want the urine osmolality to drop and serum sodium to rise, which is appositive test for DI......well, the test lasted about 2 1/2 hours before they realized that this test was conclusively negative for diabetes insipidous and they sent me home. So were kind of back to the drawing board. In the meantime I'm back to work and picking up the overtime that I missed while, I was on vacation. So the long hours and lack of sleep will likely take a toll on me, I'm up anywhere between 2-5 times a night to urinate. So there is lots of broken sleep, I can't have another catheter placed until my urethra heals up some more, there is quite a sore just inside from the catheter rubbing and moving around as I am pretty active.
So our latest plan is to discontinue my low dose Wellbutrin which was approved by the PCP to see if that helps.....I've been on it for nearly 2 years without any problems so neither the PCP or I think this is it, but the wife (who is an ER nurse) is pretty insistent so were going to try it. In the meantime I'm wearing protection 24/7 I tried to go without anything for several hours the other night but once again I realized I was being foolish, I leak every time I urinate......each time it was more than a half dollar sized and just kept dribbling a little bit for 15-20 minutes.......luckily it' was pretty light and neither of the two accidents I had were substantial while I was having my moment of denial.......

Tuesday July 22: home with the kids today while the wife is at work (2 boys ages 41/2 and 3) they're a handful.....anyway, very hot here in York, Maine, supposed to be in the high 80's to low 90's today.......the heat always makes my frequent urination and it's accompanying incontinence much worse. I'm usually in the 15-18 times per day range. The last two days my numbers have been in the 20's though. Sunday 21 times and Monday 25 times in and out of the toilet. I kept strict track of what I was drinking. Yesterday I drank (6) 8 ounce glasses of water. So I guess it goes without saying that after peeing 25 times before bed time, I was pretty anxious and tired of running to the toilet....I was very concerned about what the overnight would bring.....I had my ER nurse wife insert a Foley catheter so that I would be guaranteed to sleep. I went to bed about 2230 and woke up around 0900.....I never heard her leave for work at 0600, or anything else that may have happened overnight......I got a great nights sleep, thanks to the foley.......my PCP and my wife have me discontinuing my Wellbutrin in the hopes that that was the cause of all of this. Apparently things have gotten worse as far as frequency without the Wellbutrin. It's now been 5 days without it......I think I would have seen some improvement if the Wellbutrin was causing this.......anyway, so here I sit with a Foley catheter inserted, trying to keep up with 2 toddler boys. The foleys have been a lifesaver. I haven't gone for more than a week without a catheter inserted all summer so far......since June 9 when I went to the ER for my first Foley catheter insertion. When things get bad, it's the only thing that I've found to work so far......meds have done nothing but give me dry mouth and royally screw up my bowels. I've been off OAB meds for nearly a month now and I'm just getting my bowel habits back to normal.....except for the two minor bowel accidents I've had I the last month......those haven't been good....last time I had a bowel accident before that was in the 5th grade!!!!! Oh well, I'm rambling now......I hope this "blog" has been helpful for some of you to read as I live life despite my daily trials and tribulations. This is my story so far.......stay dry, my friends!!!!

Tuesday July 29, today nothing new to report, things have even staying the same. Catheter has been out since last Wednesday 7/23 it was causing some irritation to the urethral opening and I was starting to have hematuria. So I thinks I've got to leave the catheters alone for a while no matter how bad it's getting. I have ordered some duette catheters and I am anxious to try them but they're on back order so I'll probably call them again and see if we can speed up the process.........in the meantime, have been peeing MORE than the usual 15-18 times per day and have even had some days in the 20's frequency range.......wife is still moderately supportive but she is pretty preoccupied with the two children and her own recent diagnosis of celiac disease to pay a lot of attention to what I'm doing......most days I'm a total afterthought here........this is really taking it's toll on me, between living with the condition and the wife being lukewarm about me lately,.......