Let’s talk about prostate problems and catheters

This is going to be substantially different than my only other Medium post. Sorry. Life events have redirected me. Stop reading now if you’re not interested.

I’ve been researching this topic intensively for about 5 weeks now, and I find the personal stories are by far the most useful, so I thought I’d share mine. I’ll come back and update this when there’s more to report. I’ll try to keep it factual and report only from my personal experience. This post has been written and updated over time, so I apologize if the verb tenses jump around. It’s because I have added paragraphs to what I originally wrote.

  1. It all began…

in the middle of the night. I’d had BPH (or “an enlarged prostate”) for years, but it seemed under control with medicine from my GP (Terazosin, trade name “Hytrin”). I was accustomed to getting up a few times in the night to pee. Everything seemed normal this trip, except when I was done, I suddenly felt terrible, then started shivering uncontrollably. I had thought I felt a urinary tract infection coming on the night before, but this was altogether different.

I ended up getting an appointment with a doctor in my system (Kaiser Permanente) early the next morning, who prescribed an antibiotic and warned me if I had pain in my lower back or sides to head for the ER. A couple more days of strangely undirectional but incredibly profound misery took me there. I was having AUR.

2. Acute Urinary Retention

I couldn’t pee out what I was drinking in, and my urinary tract and kidneys were very unhappy. A kidney function test was performed (result: bad), a urologist was summoned (it was the wee hours of the morning) and several people took turns trying to (very painfully) insert a transurethral catheter into my penis. They weren’t successful. The urologist arrived, gave it one more agonizing try, then had me prepped for surgery to give me a suprapubic catheter, one that went into my bladder from the front of my abdomen, just below the waist.

3. The Suprapubic Catheter

Speaking of personal stories, I found this account of living with a suprapubic catheter cheering and useful: http://www.streetsie.com/supra-pubic-catheters/

I found it viscerally very unpleasant to have the catheter, but at the same time the profound malaise, dread, and feeling of approaching death I’d been feeling for days was suddenly lifted. The relief was incredible. My wife and I slept, exhausted.

It took some time to not be basically revolted at my own body with a rubber tube sticking out of a raw hole below my belly. There was pain (sometimes severe) from the incision (sometimes called a “stoma”), and the pain came and went for reasons that were unclear at the time, but turned out to be mostly related to the angle of the catheter entering the incision.

I was out sick from work for a week including the time between the doctor visit and the ER where I had the catheter put in, but I was back at work the following week. I missed 5 days.

Tip #1: Yes you have tubes on you, but once you get over that, note the exact position of the tubes is now critical to your pain and comfort. Eventually I realized that the pain was worse when the catheter was being pressed to one side or another to enter the incision at an angle, and I began, every time I changed undies, twisting a piece of gauze into a rope, then wrapping it around the catheter in a sort of nest to keep it pointing straight out of the incision, which increased my comfort enormously.

Pretend that’s a catheter. I found this “nest” style bandage wrapping, which holds the catheter so that it doesn’t lean over so much, to reduce my pain substantially.

You may want to use your phone camera to take photos of the position of your tape and catheter-holder stickers if you find you have a pretty successful configuration.

Tip #2: You can cut the rubber hose on the leg bag to length, but be careful not to cut too much. You can also scavenge parts (tubes, barrel-connectors, and straps) from your old leg bags if you need to, but wash the tubes and connectors thoroughly, and put them through the vinegar-rinse cleaning cycle described in your post-surgery notes, or at the URL below. You may want to keep some spare parts at work once you have a small collection.

It took a little more than two weeks for my penis to recover from the trauma of three determined professionals trying to get a catheter up it when there was not a large enough path. There was blood on the dressing or underwear from my urethra for much of that, which I found horrifying, but it decreased over time.

The pain from the catheter and incision kept me from walking properly. I annoyed everyone by walking so slowly everywhere, but at least I was still mobile.

Dealing with the leg bag and night bag was overwhelming at first. I printed out pages from this web site and posted them on my bathroom wall to be able to remember each step: http://my.clevelandclinic.org/health/articles/care-of-the-urine-drainage-bag-and-leg-bag. I annotated it with additional notes if I thought of any improvements. In time, this has become second nature and I no longer refer to the notes during my morning and evening ritual.

I also found that I personally prefer to have my leg bag rotated somewhat towards the outside rather than having the valve stick straight forward. My pants seem to fit a bit better, and I’m less bothered by the valve sticking straight forward for some reason.

Tip #3: Supplies you will want or need.

  • Additional leg bags and night bags for weekly changes until your next appointment. I got these from my urologist. I don’t know about longer-term subscription-style arrangements, but there must be some because many people are on catheters permanently.
  • Extra medical/surgical/wound tape. I often used this tape to add on top of catheter holders, or to hold tubes in more comfortable positions. For example: The catheter holder holds the night bag tube (which is stiffer than the leg bag’s), but if I move around in bed, the rotation of the tube at the catheter holder can tug uncomfortably on the catheter. So, for sleeping, in addition to the catheter holder, I also tape the tube to my leg (just above my knee) so that the orientation doesn’t change. Note, wiping your skin with alcohol and letting it dry will help with tape adhesion by removing skin oils.
Simple strip of tape across tube and leg
  • Alcohol wipes. These are very convenient instead of needing to open an alcohol bottle and prepare a cotton pad, you can just tear one open, pull out a tiny wipe, and clean a wound or hose fitting. Now that I am comfortable with the procedure of emptying my leg bag or switching from leg bag to night bag, whenever I see a bare tube connector in the process, I whip out an alcohol wipe and give it a clean before sticking it anywhere else.
  • I had good luck protecting my underwear from too much blood and gunk with Depends “Shields”, available at most drug stores. They have an adhesive backing that sticks to your underwear and are very absorbent.
  • Baby wipes or “Adult washcloths”: Sometimes you will see something gross (clotted blood, mucus, pus, etc.) that you need to wipe away, preferably with a damp cloth, but you don’t want it on a washcloth. Get the ones with the most ranting about sensitive skin and low or no scent.
  • Scissors. For cutting rubber tubes to length, surgical tape, or pubic hair if there are any tufts causing problems.
  • Silicone funnel(s): Part of the bag-changing drill is filling the bags with vinegar or bleach solution. I don’t know how other people do it, but we happened to have a silicone funnel the perfect size to fit snugly on the standard tubing barrel connector, which has made my life much easier.
Silicone funnel which stretches to fit snugly over night bag (and day bag) connector
  • Extremely gentle soap: Everything around your penis will still need cleaning, preferably twice a day, and if you use a soap that stings sensitive or wounded skin (for instance, I was in the habit of cleaning down there with Head and Shoulders (dandruff shampoo) for a bit of extra jock itch protection) you will very much regret it. I went full-hippie and got some Dr. Bronners, but I’m sure there are many gentle soaps that can be used.
  • Clorox surface-cleaning wipes: I use these on the bathroom counter, after every bag change, and on the toilet seat and handle wherever I might touch them.
  • I used some clamps from the hardware store to rig up a resting place for the bags’ connectors when I was changing and cleaning them. This keeps the connector from thrashing around on the rubber hose and touching things that haven’t been sanitized.

Tip #4a: Things that went wrong. There is good advice on line that you should put your night bag inside or over a bucket, in case it leaks during the night. This happened to me twice, both times from accidentally not closing the valve when I took it down from where it was hanging to dry.

Tip #4b: In addition, once while sitting in the living room I noticed my leg getting wet near my leg bag. One of the tubing barrel connectors had come loose. I fixed it in the bathroom and washed those jeans before wearing them again.

I spent about three weeks with the suprapubic catheter.

4. The transurethral catheter. Eventually my next urologist appointment arrived. I called twice to verify I could expect to drive myself home without difficulty, and the staff reassured me I could. The stated purpose of this visit was a cystoscopy to investigate the blockage that had caused my Acute Urinary Retention in the first place. This took place in the urologist’s department in a special room almost like an operating room. There are some accounts online that the sensation of having a camera (and in this case, a polished steel wire as well) being put into your urethra are “strange” or “uncomfortable” but I found it really awful and painful. I make no apologies; it was bad. If I had known, I would have asked my doctor if we could do it under anaesthesia or sedation. Anyway, too late by then. In addition to the prostate blockage, the doctor also found a membrane of urethral-wall tissue partially blocking my urethra, which he immediately cleared away with the wire.

At the end, he put a transurethral catheter into my penis, and removed the suprapubic catheter. A dressing was put over the opening, but no stitches, and he assured me it would heal very quickly, which a week later seems to be true.

The transurethral catheter has been another matter. I find it worse than the suprapubic in every way, and the sensation of it at the tip of my penis is extraordinarily unpleasant. I had to go through the process of coming to terms with my new tubing all over again, and hated touching myself near the cathether, which of course I have to do to clean properly. I was certainly not able to drive myself home, but over the following day and the weekend, I slowly became more accustomed to it.

I currently have to take very small, slow steps when walking due to the pain from the transurethral catheter. The slightly closer position of the urethtra compared to the suprapubic stoma means that I now cut some extra length from my leg bag tube. I was off work two days for the cystoscopy and a recovery day, plus a weekend.

All told I spent about two weeks with this model of transurethral catheter.

5. TURP surgery

Note, although most of the paperwork for the surgery said TURP, and so did my doctor, I did see some hints that it might have been the so-called ‘laser surgery’. I have to admit I’m not 100% sure which they did to me. I was unconscious at the time. I apologize if my experiences don’t match yours.

Finally the day of surgery arrived. I went in with my wife, registered, waited, went back, changed into a gown, got hooked up for the IV. They let my wife come back for this part. We waited a bit more, then they took me into the OR. I’m fat, so I had to move myself from the wheeled bed to the operating table. No big deal for me.

They gave me the anesthesia and I thought happy thoughts for a while.

Coming out of anesthesia was not as bad as I remembered from when I was 18 and had surgery on my jaw.

I woke up, they kept an eye on my vitals, and before I knew it, they were sending me home. I still had the transurethral catheter, but this was a slightly different model.

The rest of that day was pretty good; I relaxed. The next morning I got up and reluctantly went to have my bowel movement. As had been common, I had a bladder cramp or spasm at the same time, and a surprising amount of blood started coming from my penis, around the catheter. I immediately felt lightheaded like I might pass out, and called for my wife’s help. I kept my head low, and asked her to wet a washcloth with cool water to wipe my face. The feeling passed and I cleaned up the blood and went back to chilling. The color of my leg bag was a little alarming but I tried to relax.

Later in the day I noticed a lot of blood in my underwear and called the urology department, who assured me it was all normal. I cleaned up and changed undies.

Since then I feel like there hasn’t been great improvement. I’m still having pain in my perineum area, I’m still having blood in my urine, especially the night bag for whatever reason, and I’m having even more bladder cramps (sometimes so strong and painful I can’t do anything else for several minutes). UPDATE: Those very strong painful cramps turned out to have been caused by the different-style catheter they put in after the surgery, and went away completely when it was removed.

Doctor’s appointment first thing tomorrow (5 days after surgery) to hopefully remove the catheter and really see where we’re at.

I thought these questions would all be answered after surgery, but no, not really.

Okay the catheter has been removed and I know more things now! Here are my worries from beforehand, addressed point-by-point.

  • I will have had one catheter or another for almost 6 weeks, so I’m worried that my bladder muscle or the sphincter used for controlling urine flow will have weakened, which are both known to cause problems.
  • RESULT: Well, maybe, but I was already having various problems like incomplete emptying, strong urges to pee, and frequent urination, and all of these are now much improved, if still not perfect.
  • I have had BPH for a number of years, and I suspect my bladder is no longer sending the same signals about when it’s full or not, which is known to cause problems.
  • RESULT: I have not noticed serious problems in this area, but there is something odd going on when traffic is bad on the way home from work and I really need to pee. Hopefully I will learn to interpret the signals better over time. UPDATE: Perfectly good now. Same as it ever was in the past.
  • Some men report that the surgery didn’t help!
  • RESULT: For me it definitely helps. Peeing again the normal way after 6 weeks of catheterization and before that years of BPH is weird, but pretty awesome.
  • 1–2 weeks into the recovery period, there is a period of increased bleeding, which sounds frightening.
  • RESULT: Haven’t seen it yet. UPDATE: Well it’s been three weeks. I might have noticed but maybe not? My urethra feels big enough to drive a bus through so maybe I missed it.
  • Some men report incontinence after the surgery, either 1) “Urge” incontinence, where they feel a sudden urge to pee and barely have time to get to a toilet (I already have this occasionally when standing up after a long period of sitting) or 2) “Stress” incontinence where they find themselves peeing when lifting something heavy or otherwise straining.
  • RESULT: I have noticed just a bit of incontinence when I sit down on a hard surface after urinating, but this was also happening for me before the surgery. I will talk to my doctor about it to see if it can be improved.
  • Some men report long-term problems with frequent urination, which would cause problems for me getting to and from work since I have a very long commute.
  • RESULT: Doesn’t seem to be an issue, however I have noticed occasionally it seems like the sensation of needing to pee while driving is different. I am a little gun-shy of taking a long road trip or plane flight until I understand what’s going on, but I would do it if I needed to. My commute is not a problem, however.
  • Many online resources state that you should not drive for a month, which will make getting to work very difficult.
  • RESULT: My doctor said he didn’t see any reason for this, and cleared me to drive immediately. I am using a donut pillow even though he didn’t say anything about it, just because it seems wise and comfortable!
  • Many online resources say you should not strain for 8 weeks, and I’m notoriously bad at holding back if I’m feeling better.
  • RESULT: Too soon to tell.
  • Some men report that even after a year, they still can’t get the hang of peeing the way they used to.
  • RESULT: Not an issue. Everything is the way it used to be.
  • RESULT: My urine “stream” when standing to pee is no longer a stream but a wild and random spray. My doctor advises not to worry, sit to pee for now, and it can be fixed later if it doesn’t fix itself. *UPDATE* A week on it seems to have fixed itself! Fantastic!
  • RESULT: The worst of the bunch. I contracted an aggressive urinary tract infection toward the end of my treatment, possibly in the hospital. I spent yesterday in the ER with ice packs in my armpits for my sky-high fever and receiving exotic intravenous antibiotics. For the next 10 days I am on a course of Cefadroxil capsules, which is as bad as antibiotics usually are. Probiotic capsules do seem to help with the diarrhea. UPDATE: I was running a medium fever (100.5–101.9) and the lymph node on the right side of my neck was hilariously swollen. Out of the blue the ER doctor called, said their culture results had come back, and they were changing my antibiotic to Cipro to hit the other bacteria they found. Great, start the 10-day clock over again. The good news is the neck swelling went down immediately and I started feeling better. The bad news is I then proceeded to get a COLD with sneezing and coughing. Almost 3 weeks since surgery and I’m finally just about back to normal.

So, that last item has kind of taken the shine off the overall success of the surgery, but I’m still generally pleased. When I’m done with the antibiotics, look out world!

FWIW I was off work another week for the surgery, recovery, ER visit, and recovery from that.

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