Chapter 20 – Back Away From the Pouch
June 14
Who knew that my life would be controlled by a malovent Mighty Mouse pouch? I mean, maybe it wasn’t the most exciting life. It was, perhaps, a bit mundane and predictable. But it was MY life, and I was happy to explore the edges of new ideas and contemplate travel and dream about where I might find new friends and anticipate the future. And, as I have come to realize, I should not have taken it for granted, because I now find myself at the mercy of this … um … slightly icky thing that only a urologist could love.
Let’s face it, it really is all about the pouch. And until I have control of the pink pooh-bah and all that is involved with its care and feeding, my life will be a train wreck with safety checks at regular 2-hour intervals.
I can hardly wait.
Just shoot me now!
Tomorrow, I go for an appointment to have the last Foley catheter and bag removed. I will then begin catheterizing, maintaining the system, and in general starting to take charge of this appliance. And the doctor doesn’t see me for another 3 months. Smart man … Who wants to hear the gory soppy details? He will check in when it is all up and running.
Meanwhile, those of us manning the trenches will slog through the sloppy mess until some form of stasis is achieved.
Oh joy … More laundry.
Right now, it feels a bit like a war of attrition where the last one standing wins.
But, as I have come to realize, the war is not really played by any rules that are familiar and predictable, so until the pouch and I are able to co-exist with some sort of harmony, my time will be taken up with tape and dressings and sodden nighties and loads and loads of laundry. I will learn to have a back-up timer for the nighttime wake up calls. And I won’t plan to get much sleep until we reach some agreement as to who is in charge … me or the pouch.
I just need to back away if it gets too riled up.
Touchy … really touchy!!!
#20 COMMENTARY
This was a really messy, damp period in my recovery.
The new pouch inside my abdomen has a valve to control access to the outside. In its previous life, this valve lay at the start of the intestine and acted as a control to prevent food from going backward within the digestive system. That valve was cut out of my intestine and has now become a stoma … an opening through the body wall. It is sewn to the inside wall of my abdominal cavity and located to the right of my belly button, right where the stoma nurse had marked her big black X, back in April.
During this time, I learned how to use a catheter, inserted into the stoma, to drain the pouch of urine at regular intervals. Imagine if you will, standing in front of a toilet with a fifteen-inch orange catheter poking into your tummy just to the right of you belly button. The catheter acts as a drain for the urine, and allows me to pee through my tummy. Believe me, at first this is beyond weird, and freaky.
The catheter has to be handled with clean hands …
WAS. WASH, WASH,
The tip is coated with a water-soluble lubricant …
SQUISH. SQUISH. SQUISH.
Then while facing the toilet … excuse me, the wrong way …
I have to poke this long rubber hose thingy into my super sore tummy …
OUCH. OUCH. OUCH.
Then I stand there while the urine drains out …
DRIBBLE. DRIBBLE. DRIBBLE.
After which, the catheter needs to be washed again …
WASH. WASH. WASH.
and stored in a clean dry place …
PAPER TOWEL. PAPER TOWEL. PAPER TOWEL.
I then have to cover the stoma with a bandage to protect it and absorb leaking urine.
RIP & TEAR & TAPE.
In addition, twice a day it necessary to flush the pouch with a saline solution to clear it of mucus. Your intestines are designed to draw fluid out through the walls … thus drawing nutrition from what passes through. The mucus that is formed on the walls of the intestine is part of that process. However, in using a piece of gut to form the pouch, it is necessary to prevent any mucus from forming; otherwise, it would draw urine through the wall and into the abdominal cavity. Bad juju indeed.
So, morning and evening, after draining the pouch of urine … with the catheter still inserted into the pouch … I use a syringe to push saline into the system to flush it and kill the mucus. Then I either pull it back out with the syringe, or if that doesn’t work, I wait for the saline to drain out.
DRIBBLE. DRIBBLE. DRIBBLE.
I do this twice … two syringe-fills twice a day.
DRIBBLE. DRIBBLE. DRIBBLE.
Talk about time consuming!
During this time, the whole shebang … the pouch, the valve, my intestines, and my abdomen … the entire system was sore and tender from the surgery. I was uncomfortable with the whole process, and afraid that I would harm the plumbing or cause a new infection or somehow screw the pooch. There was a bizarre strangeness to the whole thing … Everything was reminiscent of being in the hospital … all that hand washing and cleaning up and rinsing off … all the time! I spent a lot of time with my toilet and sink.
And, to add insult to injury, I still felt the urge to pee in the old familiar … normal way … which was so not ever happening again.
Damn!
It became obvious that, when asked how I was doing, the question more correctly should have been, how was the pouch doing. It really was the main focus of my days … and nights as well. Washable bed pads and bed sheets and nighties … I went through them like potato chips, one right after the other… so that I was doing laundry every day to keep up with the demand.
The goal during this time was to stretch the pouch so that it would hold more urine. The process would take time and patience, but doing so would mean that I would be able to go longer between catheterizations. The normalization of the system would come when I could go 4-5 hours during the day, and 5-6 hours at night. As if that would ever happen!
So, I started out going every 2 hours, and tried to stretch it to 3, with limited success. But the bigger issue was to get the thing to stay dry in between. As time went by, the spurting and seeping and general dampness became more controllable. I could go 3 hours during the day and 3-4 hours at night without any leaking … well, most of the time. I had found that a large waterproof bandage with a reusable adhesive could be used when going out in public. That made a huge difference in my life at this time. It meant that I could go to the store, or go out for lunch with friends, without having to worry about my clothes becoming mired in urine.
Mind you, because I didn’t have much news that wasn’t connected to my plumbing my conversation was rather limited, but it was nice to get out of the house and hear what the rest of the world was up to.
So, it is fair to say that, indeed, I was being controlled by the Flying Mighty Mouse Pouch.
The quest to make it all seem normal was daunting. But I am here to tell you that a year later I am up to 4 hours during the day and 5-6 hours at night …. with only the occasional spasm and leakage to keep me honest and let me know that I am not totally in charge. Just proving, anything is possible!
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