Making it through the dark times

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I am an active 65 year old who works out regularly.  I’ve been on this site commenting sparingly but reading voraciously.  I came here to try to gain some insight into what I have been experiencing.  I hope my story can help alleviate some concerns of others who are going through the trials of healing.

For the previous 8 years or so I had been getting up 3-4 times per night.  I wrote that off to aging and drinking beer regularly.  But in January 2017, my trips to the bathroom started to rise in the 6-7 times per night.  I was now experiencing tremendous difficulty maintaining any kind of stream when urinating.  It was typically some short streams followed by intermittent drips and spurts.

I went to the urologist who put me on Flomax which really only provided a modest improvement.  After several months, I had had enough and went through a urodynamics test during which the nurse had difficulty getting a catheter into my bladder.  I was only able to void about 90 ml of urine before the test and my Post Void Residual (PVR) was 450 ml.  Also by this time, if I sat on any hard surface, it felt like I was sitting on a warm golf ball.  I decided it was time for surgery and I had my TURP surgery on August 16, 2017.

On the day of my surgery, I voided as best I could but they still removed 450 ml from my bladder in the operating room.  My prostate was quite large weighing in at 100 g.  The doctor removed ~70% of the prostate and told me my bladder was all stretched out and floppy.  The actual surgery went well.   I stayed overnight in the hospital with a Foley catheter.  They ran a saline solution through my bladder all night and the results were promising.  I had essentially no pain and very little blood was coming into the catheter bag.  The next morning the Dr. saw the results and said I could be discharged with the Foley catheter immediately and come back in four days to have it removed or I could take the catheter out and produce two specimens over the next few hours showing a decrease in blood in the urine.  I opted for taking the Foley out and then spent the next 4 hours trying to produce a sample.

By noon, I had only produced two drops of bright red blood and was beginning to pace.  I managed to produce a couple of tea spoons of red urine when he arrived and the bladder scan showed about 250 ml.  So he said he’d be back at 5:00pm.  I tried desperately to pee but couldn’t.  By 3:00 I was in such pain from my distended bladder that I couldn’t sit or lie.  I was barely able to complete a thought the pain in my bladder was so intense.  We got the nurse to put the Foley catheter in removing 1000 ml of urine.  I thought I had gone to heaven.  The release was orgasmic.  With the Foley catheter in, I was discharged.

Over the next few days, I got the best sleep I had in the past 10 years.  I had the Foley catheter removed four days later.  Peeing was very difficult the rest of the day.  At best, it was short streams and a few spurts.  Totally unsatisfying.  I went in the following day and the doctor saw I was retaining urine in my bladder.  They taught me to self catheterize and they also took a urine specimen as I complained of having night sweats.  It turned out I had an infection.  They prescribed the antibiotic, Cipro.  I took that for three days but was getting worse - not better.  By the fourth day, they found out I had a staph infection and switched me to Keflex.  However, the Cipro was in my system and I was allergic to it.  By that night, I was breaking out in hives.  I went to the ER where they gave me steroids, benadryl, and pepcid.  After a couple of hours, I calmed down and went home.  I was anxious to self catheterize as I was overdue by three hours.  Try as I might (4 times), I couldn’t get a catheter in.  Bladder pressure was mounting fast.  Back to the ER.  The first nurse couldn’t get the Foley catheter in either.  He tried for 30 minutes.  By this time, I’m hitting the side rails of the gurney with my hand just to distract me from the pain in my bladder.  They eventually found a coude Foley catheter that worked.  Twelve hundred ml’s later, I reached nirvana again.  I went home with another Foley catheter in for the next week.  I drained anywhere from 1500ml to 1800ml every night over an 8 hour period.

I had the catheter removed, the antibiotics had reduced the inflammation in the prostate and urethra, and I was able to pee better.  However, now I was leaking like a sieve.  Urine just continued to leak out of me.  It’s like I had a catheter but no bag.  I had no choice but to wear Depends around the clock.  The days turned into weeks but I wasn’t seeing any improvement.  I would get up from a chair and Woosh!  Cough and Woosh!  Laugh and Woosh! - a significant stream of urine shoots out that I didn’t even know was happening until I felt it’s warmth. I was growing despondent thinking that somehow my surgery didn’t work; I feared I was going to have to be on a self catheter program for the rest of my life.   

The doctor saw my frustration and prescribed imipramine which helps dry up your system.  After 10 days on imipramine, I started to notice that when I awoke, I only had a couple of minor drips in the Depends.  For the first time, I was encouraged.  I was still having trouble during the day with sudden releases but the nights were getting better.  Within just a few days, I wasn’t leaking anymore.  I still get up from 2-4 times per night.  It has now been 2 months since surgery and I am finally beginning to believe that I will fully recover from this surgery.  I’m still getting up 2-4 times per night as my bladder had been “trained” to prompt me to urinate based upon always having a residual.  So right now I typically void 250-350ml.  I sense that it will improve over the next several months.  My Dr. used the analogy of a burn victim.  It takes several weeks for a new dermis to cover a burn wound.  The same is true when you burn the interior of the prostate.  It is already a moist environment so the new surface takes a while to cover the wound.

I’m reading the patient stories here online and it does serve to lift my spirits knowing that my case is not unusual.  Many others are worse off and some are better off.  The point is that there is a full spectrum of recovery from this surgery from my friend who was totally fine 3 days after surgery never experiencing any problems to guys that have had multiple surgeries and are still struggling.

For the first time, I’m beginning to see the light at the end of the tunnel.  Hang in there through the dark times.  For a few, the surgery is successful right away.  God bless them.  For most, it’s a series of trials and challenges.

All the best to everyone.

Doug

 

2 likes, 11 replies

11 Replies

  • Posted

    What was your deciding factor to do TURP as opposed to other procedures?
    • Posted

      I really just went on the recommendation of my urologist who said my prostate was large and my urethra was very constricted.  He said that the TURP was the best way to go.  I listened to him and also based my decision on the fact that my good friend had it done in FL and he was perfectly fine after 3 days.  I wasn't prepared at all for what I've been going through.  I thought I would be similar to my buddy.  It wasn't until I got to this site that I realized how arduous this healing can be and how many different surgical approaches are available.

  • Posted

    Doug,

    I'm glad that you seem to be getting out of the woods.  You're only two months out, so it's good to see some good experiences.  I just got free of one of many Foley catheters two weeks ago after my 5th procedure in 19 months.  Your overnight numbers, 1500 to 1800 ml/cc overnight are very similar to mine.  Once the catheter came out, it was back to being up 3-6 times per night, measuring 250-400 each time.  I get 90 minutes to 2 hours in between, which has been my life for the last 15 years or so.  BTW, my most recent was really uncomfortable, as it was a Fr 22.  Because of the large gauge, I couldn't sit unless I was right on the edge of a chair, sitting on the hip bones.

    My average flow rate after the urethrotomy two weeks ago is really high, around 27-28 CC/second.  IFF the urethra is still patent (open) 20 days from now, the plan is to go to a scheduled AUS implant on Nov 15th.  It's already on the schedule for the teaching hospital where it would be done.   I'm trying to not get my hopes too high, as I've had several disappointments already when the strictures at the sphincter came back too quickly.

    This afternoon, after being in Depends for the last two weeks, I went back to an external catheter and bag.  It's not great, but at least it's much better (to me) than wet Depends 24 x 7.

    • Posted

      Hi Glenn,

      I'm so sorry to hear of your challenging situation.  It can be so frustrating and depressing to fight your way back to some degree of normal.  I currently am similar to you re: up every couple of hours at night, pee 250 - 350ml and go right back to sleep.  (One night after I had the catheter out, I was up 26 times - about every 20-30 minutes.  I was a zombie the next day.) 

      You're absolutely right about the Depends 24x7.  What a drag that is.  I started doing kegel exercises a few weeks ago and do between 100-200 each day depending upon how often I remember during the day.  At first, those muscles were very weak but in short order they began to strengthen.  I think the kegels have helped.  You could maybe ask your doctor about the imipramine.  Not only is it an enuresis (helps w/ incontinence) but it is also an antidepressant.  I haven't had any troubling side effects with it except for perhaps a dry mouth.

      The Foley catheter was rough on me too.  I actually bled from the tip of my penis for several days b/c it was just too freaking big.  It felt like my penis had been slammed in a desk drawer...repeatedly.  I moved very carefully with that thing in.  It's taken several weeks for that bruising to go away.

      I truly hope that your next procedure will do the trick for you.  Keep your spirits up as best you can.  Good things will come eventually.  And thank you, I am so thankful that things have improved for me in two months time as I know this can be a torturously long recovery for many.

      Doug

    • Posted

      Thanks for the medication recommendation.  My incontinence is because of sphincter strictures that resulted from the Greenlight Laser procedure on March 10, 2016.  So even though the sphincter constricts OK, with the scar tissue of the stricture, it can never block the constant leakage.

      The plan of action for me now is a bit of a moonshot I think, but I'm willing to try it. They opened up the stricture with a urothrotomy (the 3rd attempt), and after a 5 week wait will do a cystoscopy; if it's patent (open), I will have surgery for an AUS about 9 days later (it's on the schedule already).  Normally, they go three months, but my doctor understands my needs and is going the extra mile.

      Should this not work, I've learned that the university hospital I go to (Wake Forest) has done research with rats using Halofuginone coated catheters following stricture dllation or urethrotomy.  It was effective for rats, but for some reason never got to human trials.  Here's a cut and paste of the results:

      "RESULTS:

      HF was coated successfully on silicone catheters. Local urethral concentration of HF was tenfold higher than serum concentration in treated rats. Animals with HF-coated catheters had no new type I collagen deposition after urethral injury. Control animals had increased periurethral collagen type I deposition, typical of urethral stricture formation.

      CONCLUSIONS:

      HF can be coated successfully on silicone catheters. HF successfully inhibits periurethral type I collagen deposition after urethral injury. This may become an important therapy to prevent urethral stricture formation or recurrence after endoscopic therapy."

      PMID:

       

      21204688

       

      DOI:

       

      10.1089/end.2010.0514

  • Posted

    Sorry to hear that you've had a painful journey but it looks like you are gradually getting there.  I'm probably a year or two behind you but an op is inevitable in the near future.

    Thanks so much for taking the time to share your experience and best wishes for a successful recovery.

    • Posted

      Thanks Captain Al.  All the best to you as well.
  • Posted

    At least now the light can be seen at the end of this tunnel..As we age, it take longer for us to heal of whatever..so one day at a time..

    Good luck & God bless.

    • Posted

      Ain't that the truth!  Our minds still think we're in our 30's but the body isn't buying it.  A muscle strain that used to take a week to heal now takes a couple of months.  It seems I don't work out anymore, I am just in a constant state of rehabilitation of some body part.  :-)

      Thanks for the kind thoughts, Bayliner.

  • Posted

    Your post will help more men than you could possibly fathom.  Pay attention to your own words:  "My Dr. used the analogy of a burn victim.  It takes several weeks for a new dermis to cover a burn wound." 

    Several weeks, my friend.  Several weeks.

    Don't be in such a hurry, and may God speed your convalescence.

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