I made it!

[Clayton]

Steve,
I still have problems with my suprapubic, although its getting a little better in some ways. My nurse said they start to really mellow out after about two years, so people like us never see any real relief because we don’t have it that long.

I keep mine secured to my hip with a Statlock, then I tape it a couple of inches from the stoma so that the catheter is pointing down. Any other direction and the tip tends to push against the bladder wall. Also, if you have urine in the tube and it starts sloshing back and forth, that can change the pressure inside your bladder, which can give you spasms that you usually feel in your penis and not the bladder itself.

Cleaning is another issue. If yours weeps, like most of them do, then keeping the area clean really helps. I have to keep the hair in the area cut so that nothing sticks to it and starts pulling.

Yep, my surgery date is coming up. I’m anxious in a good way and bad. It’ll be nice to have this finally behind me, but surgeries are always stressful. It will be nice to have to get up in the night to pee. Never thought I’d think that.

Clayton

[Steve]

Clayton,

Thanks for the quick response. Yes, weird feeling in penis and sore in stoma area. Looked into the operation you are having. Seems it’s a good direction for you to go. My stricture is in the membranous area. Doc has to cut up into the prostate to re-attach the urethra. Will be using the bladder valve only after the operation. Doc says no problem.

Hope to here how Greg is doing.

Stay in touch,
Steve

[Clayton]

Steve,
It was a difficult decision to make, whether to try and salvage my entire urethra or reroute to the perinium. Ultimately I decided the way that I did because I’m nearly out of fight after endless tests, two surgeries and weeks of radiation for a cancer that’s entirely unrelated to the stricture. I just want to get on with my life, and the urethrostomy seems like a relatively simple way to get there.

It’s certainly not for everyone though. You can’t naturally impregnate anyone, although on the other hand you can’t accidentally impregnate anyone either. You also have to pee sitting down, which a lot of men do at home anyway, but you’re left without the option. One benefit is the fact that catheters are easily placed from the perinium, since there’s no bends or turns in the urethra from there.

Have they done a cystoscopy through the suprapubic on you, or just the urethrogram?

Clayton

[wentzel]

Steve

I am doing well. I am a few says away from my VCUG. I go back this thursday and have my catheter removed and tested for leaks. I am hopeful all goes well. I have done everything as suggested and not strained or tried to do anything that would possibly damage the graft. It has been incredibly boring, but if all goes well completely worth it.

Clayton is spot on about the suprapubic. I have only had mine since may (short yet very long time in many ways). I had discomfort early on (spasms that felt like urine was going to shoot out my penis uncontrollably). It was especially bad when they upsized it. The ER docs put a small one (14mm I think) and on the first change my urologist’s nurse decided I needed a larger one (15 or 16). I had discomfort for 2 days after with no meds. Oddly enough when I had the Uretroplasty they changed it back to 14 and it has been like it isn’t even there. The traditional catheter however is another story. It does not hurt as much as it is annoying. I was instructed to keep it taped up to my stomach and that pulls sometimes depending on how I twist. Wisely folks here advised me to keep it lubed up with antibiotic ointment and that helps with night erections and general movement.

I have some really nice hollister 9814 leg bags that have some very nice straps that work well for me. If this was going to be a longer issue, I would look into the belt that ken shows here. I get them on amazon for around $10. The cleveland clinic has a nice little page about care of bags that I follow:
https://my.clevelandclinic.org/health/articles/care-of-the-urine-drainage-bag-and-leg-bag
The only different thing I do is I also rinse my tubes etc with alcohol and leave a little in the bag overnight. I have had some issues with MRSA UTI’s and had a couple trips to the ER before surgery. I use paper tape and probably go a little crazy with it. I also get some split bandages to cover the stoma. Without sounding like a wimp (like anyone reading here is???) my skin a sensitive and the paper tape is about all I can use without breaking out.

The other issue I have is none of the paper tape holds up to a shower. I need to keep the regular catheter up and on my belly, so I wrap a piece of parachute cord around the end and my waist. It looks really odd, but it works.

I am so looking forward to walking out the door without having to think about backup supplies, tube etc. I also can’t wait to roll over in bed again!

My problem all started over my poor drinking habits (way too much soda) and lack of going to the doctor. I have since cleaned my act up and drink mostly water. I don’t drink much alcohol, but promise that I am going to raise just one small Mexican coke to you, Clayton and myself to improve and get our lives back!

greg

[wentzel]

I also wanted to mention that my graft site is doing well too. I developed a couple sore places where my teeth are rubbing a little on the scar tissue. I’ve starting using a mouth rinse for canker sores and mouth lesions and it is helping. The pain is nothing like I was imagining. Overall I don’t think I ever went over a 4 or 5 out 10 in the pain scale for anything. The worst was in the hospital and they had good meds that I asked for as needed. Mostly has been a 1 or 2 and now is more dull and mostly when I set in a car or a chair. Tylenol has helped.

[Clayton]

Greg,
I’m glad to hear everything is still going good. Getting close to losing the catheter must be exciting.

How has walking and sitting been since the surgery?

Oh, and I’ve read other people mention that it’s handy right after a catheter removal to have a portable urinal for any possible long car trips home from the hospital. Our bladders are not used to stretching anymore, and really frequent trips to the bathroom are pretty common for several days. Something to keep in mind.

Clayton

[wentzel]

Clayton

thanks for the suggestion. I have a 2.5 hour ride home and would not have thought of that. I will definitely hit up amazon for something to be prepared.

Walking is pretty good. I am normally a fast walker and that has for the moment changed. My wife used to always remind me to slow down. These days it is the other way around. I am sure in time that will change. Not really much pain, just soreness that keeps me moving a little slower. It seems to get better all the time. I am 2+ weeks into recovery and there is a definite positive difference in how I feel.

Sitting is still a little bit of a challenge. On soft things I can tolerate longer than on hard chairs. I have really avoided that as much as I can to make sure I don’t damage anything. The last couple days I have been avoiding laying until I go to bed. I can do the couches and my office chair fairly well. I’ve gone out in the car a few times, but have not driven myself yet. Not driving has been tough. I drive around 40-50K miles per year for work and being stuck here and relying on someone else to drive is weird.

I am planning on going back to work after Labor Day. I do training and technical work, that I mostly stand so it should not be a problem. I plan on easing back into it. The surgeon did caution me on crouching and bending down. I would guess that sort of maneuver is out of the question for a while. I hear that 6 months is a good time frame to be cautious. I can live with that. MY incision seems to be healing but is definitely still tender.

I hope you are getting ready for your surgery. Sounds like you have a good frame of mind. I know that my surgeon described your procedure and said it was very successful. Moving on with our lives will be great. It has been a long summer for me and I imagine that you are anxious to get your life back. Please let us all know how it goes.

greg

[Steve]

Greg and Clayton,
Thank you so much for the info and advice. Yesterday I had a super public tube change. The size is a 16 which I have had since the start (May 22). Every change takes a day or two to get used to. Over the past 3 years I have mainly been using intermittent caths, but also have had many penile catheters for over a month. They have been more annoying than painful.

Greg it sound like you are doing quite well. I am sure your VCUG will do well. I am sure you will feel great without caths and pain. Please report how that goes.

Clayton, I know you are next on line for surgery (August 28th?). I will follow on September 12th. I will keep my Ipad with me in the hospital and try to report as Greg has. As you, I am looking forward to getting on with my life. Will be monitoring every day for any reports you can manage during your hospital stay.

My stricture came 6 years after prostate cancer and high dose radiation. One day I woke up and could not pee. By the afternoon I was back peeing strong. Went to see Doc and he suggested he do a look see. One week later, still peeing, went to out patient surgery. After surgery Doc told me I was a little closed and that was normal due to radiation treatment. He stretched me a little. Sent me to hyperbaric since I was now bleeding. A month later I stopped again. Pushed hard and peed. Saw many small black dots in toilet. Took samples to Docs office. He was on vacation. Nurses sent samples to Lab. Turned out to be Uric Acid Bladder Stones. Doc said they were due to diet. A month later I stopped peeing. Doc went inside and said all looked well. He put in a cath. After that I rarely peed on my own. Doc back on vacation. He left a cath in me for a month. When nurse went to remove cath I yelled with pain. Another Doc came in and much to my dismay he yanked the cath out. Blood all over. Put in new cath. I went to a new doc. He immediately did cat scan. Showed large sediment stone. Doc removed stone as large as my thumb. Peed for a while. The stream got smaller and smaller till finally I had to use self caths. Turned out prior Doc was part of group of Docs that had sold their business. The Doc was loaded and was more interested in travel rather then patients. Living with penile caths, sentiment had formed at the bottom of my bladder due to lack of complete drainage. Formed large stone. When they removed cath I would start to pee, then the stone moved and blocked me. Telling all this so that other people will learn from my experience.

Now I pray that that this operation and yours will cure our problems for good!

Keep in touch,
Steve

[Clayton]

Steve,
My first suprapubic was a 14F, but they went to a 16F a few days later because the smaller one got clogged up. They probably should’ve used the bigger one from the beginning.

Sounds like you’ve been through hell like the rest of us. It’s odd how we all ended up here differently, but now our experiences are so similar. I’ll update my progress on here after the surgery. My surgeon said mine is much simpler to perform than a urethroplasty, but the after effects are similar in a lot of ways. Just a shorter duration of catheters afterward, and probably less swelling because of the short surgery time.

Clayton

[wentzel]

Guys

Tomorrow at 2:00 I am going for my VCUG and hopefully catheter removal and being normal (whatever that really means??). I am a little nervous at the removal and also that everything is water tight. I won’t be crushed if it isn’t but I am going to remain hopeful. My doctor tells me it is 90% likely at three weeks it will be fine.

I had an eventful night last night. Apparently the normal catheter (which is silicon rubber) is stretching a little. I was awoken to a feeling of wet around 4:00 am. I found that the plug sealing the catheter in my penis,had worked its way out and was draining on me. I re-inserted it, cleaned myself up, and went back to bed. An hour later it was out again. I put some tape on it and managed to get it to hold. I called my doctor’s office first thing this morning and apparently it is common that the silicon stretches out and there is just enough pressure in the bladder to pop it out. They suggested that I used some heavy tape to secure it. I was a little freaked out and glad that I don’t have long to wait. I have had only one “accident” besides this, and it was my fault. I did not pay enough attention to the suprapubic connection to the leg back and it came loose. Luckily I was home when it happened. I have worried about a bag breaking etc since this all began. I carry a spare bag in my vehicle and in my work bag, just in case.

So next week for Clayton…. I hope you can get some rest and find good peaceful relaxation this weekend, to be in a good frame of mind for the big day.

Steve you’ve a little longer and likewise I hope the time passes peacefully and quickly for you.

I will (as we say here in WV) let Y’all know how it turns out tomorrow!

greg

[wentzel]

Well I am one catheter less this evening. I went for my VCUG today and was unable urinate. It wasn’t like before with the stricture, it was a very different feeling. I was unable to release my sphincter to start any flow. The doctor tells me that it is somewhat common, that some guys need a little time to re-train the bladder and sphincters. They removed my normal foley in my penis (a gigantic relief, that $#@#$ thing was annoying!) and left the suprapubic one. They asked me to put a plug in the catheter and try to urinate normally over the weekend. I thought that they would take out both if I had a successful VCUG, but she told me that either way their practice is to leave the suprapic in and plugged, just in case. Plan is to see how the weekend goes and then if on the off chance that things don’t work, I will have to come back and maybe do a scope. So for now I am drinking water keeping my fingers crossed. Just as an FYI to anyone worrying (I know I was) the catheter removal was quick and while not painless, not nearly as bad as I had imagined.

[Clayton]

Greg,
Sorry to hear that it didn’t work out like you wanted, but I’ve read about other people having the same problem, and one of my doctors told me that they have that happen a lot. Sometimes it’s just your body remembering how things work, and other times it simply comes down to anxiety. We want so badly for everything to work out that we end up causing shy bladder syndrome.

Keeping the catheter plugged and allowing the bladder to naturally fill up can sometimes cause the brain and nerves to remember how everything is supposed to work. Running some water in the sink or shower can help too, creating some nice background noise to help things along.

Clayton

[wentzel]

Clayton

thanks for the kind words. I am trying not to freak out. I did take a pain med just in case before the VCUG. I was overly concerned about the catheter removal. I have read a couple places that it (hydrocodone) can cause issues with urination. I will see how today goes with a plugged catheter. My urologist office said to wait over the weekend and see how it goes. I just need to trust they know what they are doing.

I think going forward I need to work on my fear of pain, it really gets me hyped up. I am an adult 56 year old male and it is ridiculous to get this worked up. I think my lack of experience with the medical system has inflated this to a not manageable level.

Hopefully in the next day or so it will resolve itself.

[wentzel]

Today I was able to urinate briefly a couple times. I do believe it is something related to my internal bladder sphincter. It doesn’t feel like it did with the stricture and there was no pain. It was a fairly forceful stream for a few seconds but slowed quickly. I have been drinking and trying to stay positive. Worst case I call the Doctor on monday and tell them it’s not working and see what they say. I’m trying hard to stay upbeat and not get the rest of my family worked up. I do strongly believe that things happen for a reason and that we can only look backward to see and make sense of that plan.

greg

[Clayton]

Greg,
I think it’ll just take a little time to adjust. It’s great news that it worked, even if it was brief. Nerves are strange things when they’re not used for a while, and the process that takes place when urinating is an extremely complex set of signals between your brain and a number of muscles and chemical receptors. A little off and nothing happens. It just takes time for your brain to figure it out.

After my surgery I couldn’t walk for a few months. During the latter part of that time there was no reason why I physically couldn’t, but the signals that my brain was receiving from my legs didn’t match up to what it expected. I literally had to learn how to walk again, which was incredibly hard and frustrating. Tonight I walked into my house and felt this strange feeling, almost like my mind was excited about something. I suddenly realized that my stability and dexterity was back. My brain finally remembered, which is what my physical therapist said would happen eventually. It was a massive relief.

Try not to get discouraged. Our bodies are amazing machines, trust that yours knows what it’s doing.

Clayton

[Author]

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