I Can't Hold Back
In this post I will attempt to walk a line. I don't like being negative about things in general as I don't think that complaining about something makes it better. However, this blog must give an honest account of my journey if it is to be of any use. With that said, this has been the most frustrating part of this journey so far. It's time to talk about the aftermath of the surgery and beginning the road to recovery. So I'll start with lots of talk about...urinary incontinence. Sounds fun, right?
As I stated in the last post, I had my first experience with urinary incontinence shortly after my catheter was removed. Thankfully I brought “undergarments” to help deal with it to that and they have become a large part of my life afterwards. There are two main reasons for this. The main one is that the prostate is actually involved in the control of urine flow. Men have 2 different valves that can control urine. Prostate surgery removes one entirely and the remaining one usually isn't used as much so it will take time to build it up. The other is nerve damage. While modern surgeries such as mine minimize nerve damage, some can still occur. This means the brain will need to re-learn how to recognize the signals.
This matches my experience. Post surgery I really can't tell how much urine I have or when I'm actually finished. These are sensations I simply took for granted for over 50 years...and they are just gone. I can feel some pressure, but it doesn't feel quite the same. And other times, I feel no pressure at all, but I just start releasing. It's been about 4 weeks since the surgery and 3 weeks since the catheter was removed and here's what I've learned so far.
Physical activity and body position make a big difference. I have the most control issues when I'm standing and actively moving. If I'm sitting or lying down, I have little to no problems. However, I have learned that if I have been sitting for a while that the first thing I should do when I get up is go to a toilet. I still forget sometimes, but the more I do this, the less accidental leaking will occur. It doesn't matter if I feel like I need to urinate or not, it will likely happen anyway so I can't really trust my instincts on this at this time. Interesting enough this has made my overnight/sleeping experience different, however the easiest to handle. Different because I get up every 1-4 hours (usually 1-2) throughout the night and make a bathroom trip. Fortunately, most of the time I have been able to get back to sleep so by morning I'm reasonably rested. However, by morning my briefs are not significantly wet. But once I start doing things, that changes ... a lot. This has caused me to adapt my morning routine. I get up, shower, shave, etc. then put the briefs I wore overnight back on as they are still quite dry. Then I go downstairs to do my usual morning tasks (attend to cats, check the pool, get ready to settle in to work). After these activities, I've usually leaked quite a bit and then I do my first change of the day. On an average work day I'm at home working on a laptop so getting up every hour or two is normal and I try to remember to go to the bathroom right away. Then by evening my activity level picks up and I start leaking regularly and I'll need to change briefs several times in a much shorter time window. Then I'll do one last change before bed. And the cycle continues.
As of today, a good day for me is 4-5 briefs. A bad one is 6-7. Of course those terms are in terms of urinary control. The “bad” days could be good otherwise because I'm actually doing things. I'm not one who usually sits around all day so it's a bit of a trade off. Be more active while wetting myself more or lay around and stay drier.
I have also been getting out and doing more normal life things. I went out to dinner with friends last week. This week I did my first in-person customer visit since the surgery. Both of these involved a brief change. I have a cloth tote bag that I take with me that has supplies such as extra briefs, a small plastic bag in case there is no place to properly dispose of soiled briefs, as well as diaper rash creme and wet wipes. So far that is working. I may have to adjust things as I learn more. But I want to show that it is possible to do normal life things even a few weeks from surgery. It's not exactly the same at this point. But it is possible. I have been able to do my weekly shopping and errands and just this past week was able to mow the lawn. I won't say everything is normal, but being able to do normal things is very good.
One of the goals of this blog is giving tips to men going through this. One tip about the underwear (adult diapers). The size charts are based on waist size. This put me right on the upper end of a small-medium. So I started with those and, initially, I thought they fit well. I learned after about a week that although they fit well at the waist (which is elastic), they were cutting into my upper thighs too much and further irritating an area already irritated from leaking urine and sweat. So I tried the next size up (large) and found that those fit better. So the tip here is don't be afraid to try out a couple of sizes before you start buying in bulk (which you will likely need to do).
Another tip is something I've mentioned earlier here and in the previous post...diaper rash. I can only speak for me but I would imagine that some amount of it is going to be inevitable. The good news is that there are really good products out there as I suggested in the last post. Get a few tubes of it and keep them in any bathrooms you typically use at home as well as have one for travel. This situation is uncomfortable enough so do what you can to help lessen the discomfort. At this point, I'm usually applying a creme 2-3 times a day so it's not a bad idea to stock up at least early on post-surgery.
Another diaper rash tip. Find some time during the day when you can sit without any pants or undergarments on at all and just let your groin air dry. It's not the worst idea to have a towel underneath you and some kind of tissue or toilet paper handy to handle any leaks that may occur, but I have found that at doing this at least once a day really helps keep the rash under control. Thankfully, it's just me and my wife at home so it's not difficult to do. But even if that's not the case, find some time and a place where you can do it.
I will say the biggest struggle is mental. I get frustrated and discouraged on a regular basis. I rationally know it's not my fault but it's still something that normal adults just do and likely take for granted. I know I did. And now that I don't have that, it can really bother me. I just have to remind myself that this is temporary. I've seen various statistic with a range of only 2%-8% of men have long term problems. This should get better in a few months. I'm grateful for those around me, especially my wife, who have been supportive. My wife in particular as she has seen the frustration first hand that I typically don't share with others. I am doing kegel exercises every day since the catheter was removed to try and rework those muscles and, hopefully, regain control. But this will take time...and that is both encouraging and frustrating. I look forward to the day when I don't spend much of my waking hours concerned about urine.
There is more to cover with respect to recovery, but I'll tackle those in another post. But I thought it was important to cover this topic in its own post as it is the biggest challenge near-term after surgery.
Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.