I never had any choice between my conduit and internal replacements
for natural-bladder loss due to cancer, simply because I did not know
there was anything else.
When my urologist told me my bladder would have to go, he made a
brief comment to the effect that there was an alternative replacement
procedure but that it took much more intestine…and that was all he
His office personnel were poorly informed about certain matters.
When I asked about a support group, I got a blank stare like I was
speaking a foreign language. "Maybe the Cancer Society can help you." "Where is the blood bank located?" (the urologist wanted me to have a unit of my own blood on hand and I surely could not have been the first patient required to do so.) The staff did not know the blood bank had moved some months earlier so they gave me the wrong address.
I had an old Lippincott’s in which I was able to find some good
information on my pending ileal conduit, and it included an address for
the United Ostomy Assn. Oddly enough, the address was still current
even after the 15 years since the 4th Edition Lippincott’s had been
published. My experiences with most service organizations before &
since indicates such places move around or change names like the IRS was after them, or they expire and no longer exist.
Within a couple of days I had a ‘phone call from a local UOA member
who really "made my day." The only other surgical removal of a natural
body part I ever had was over 50 years earlier for an appendectomy…with cancer never a factor at that time. The man from
UOA greatly relieved most of my apprehensions and even was able to come visit me the 4th day after the surgery.
During his visit, he presented me with a UOA booklet on the
subject and it was then that I learned there was such a thing as an "ET" Nurse who was supposed to first check me out to help determine the best place to put the stoma. Nothing like that happened with me or maybe I might not have had the major problems the next two weeks trying to find the right kind of urostomy pouch to wear.
Between a boondoggle in the late ordering of my at-home supplies
package and UPS holding up delivery for 2 or 3 days, and with the wrong pouch my ET nurse insisted I wear, I ran out of initial supplies that Sunday and literally had to use duct tape to hold the pouch on. I
called the ET nurse the next morning at the hospital and, to her credit,
she did help me out. She had her husband drive her first to the Cancer
Society offices where she picked up at random whatever free things they had that I might need. She then had her husband drive the 25 miles out of town to my home where, in spite of my pointing out why the 2-piece pouch with its very stiff wafer was failing, she insisted on applying another one just like it.
Over the next few days, the type she wanted me to wear failed
sometimes within minutes of application because the stiff wafer would
not bend where & when I did. Towards the end of that same week, I
called her again, whereupon she told me her responsibility to me ended upon my discharge from the hospital.
Happily, among the random supplies she brought from the ACS was a
box of the very pouch I needed. It was just a one piece which would not do for doctor-office visits but in all other respects it was great! It
was an older version so had a belt-ring attachment which I was able to
cut off. As soon as I could, I ordered same from the supplier and was
happy to see the newer version which did not contain the belt ring.
For the next few weeks it was a matter of learning how to work
around the pouch so that the seal would not be broken. Jockey Briefs
were out because they were too constrictive so boxers have since been used. But even with a "comfort" liner, the pouch would get stuck to that area where my leg ends and abdomen begins. So since then, I cut a 3" diameter hole in the underwear through which I stick the pouch so it does not touch my skin.
So, as with so many good things, the pouch maker decided to
"improve" the model and that was a disaster. Urine seeped through the part containing the adhesive. Happily at the time, I was providing
respite care for a male hospice patient who’d gone through similar
experiences before stumbling across the Pouch That Works. Now, this man was a sales executive with a major worldwide electronics corporation and his wife gave on-the-job training teaching brain surgeons how to properly implant electronic devices into the brains of such as would have Parkinson’s, etc. These were certainly not Mr. & Mrs. Average Patient by any means, yet they had the same ET nurse problems in a very major cancer center that I did in my local general hospital.
I immediately began using the Pouch That Works in September, 2000.
I make my own shave lotion, and at that time, it was from home-crushed cloves, cinnamon, and black peppercorns mixed with 190 proof neutral grain spirits. In mid-December, after making a batch I still had some spirits left over so beefed up some egg nog with it. In one day I went through 6 pouches because the alcohol attacked the adhesive from the stoma. What with not all the adhesive being affected, pouch removal became more & more of a trial and for the last one, there was no way I could use the alcohol-based skin prep because its stinging was so great. Also, the fluid coming from the stoma could not be controlled long enough for the skin prep to dry.
I left that last pouch on for 10 days, during which time the places
where I’d torn off skin when removing the other pouches had healed. At any rate, I’ve not used skin prep since nor drunk any neutral grain
The only time now that I have any problems are when I fail to hook
up to the bedside drainage container before falling asleep, or when I
let the pouch get too full and stand up the wrong way when going to
empty it. With care, I can go up to about 2 hrs./100 miles between
emptyings. While I do carry a warbag in the car for emergencies, only
once in the last 10 months did I need it. I have severe arthritis in
both knees so often have trouble standing up from a sitting position.
This occurred in a restaurant as I was leaving so all I needed was
Depends diaper to protect the car upholstery until I got home…which is
where I was going, anyway.
From March through December of the year 2,000 I had only two brief
periods of trouble due to incorrect pouches. Anything else then and
since came from my own failings and could have been easily avoided.
The point being made here is that my problems were external, could
easily be seen and just as easily corrected. It was not until June,
2001, that I learned of such things as neobladders and Koch, Indiana,
Miami and numerous other pouches…all internal and all presenting major issues needing to be resolved for effectiveness. There’s no way I could tolerate the long-term inconveniences of such things and I am eternally grateful to the urologist for not wanting any of them for me. In the UOA booklet mentioned above, a comment was made that the ileal conduit could be more or less quickly adjusted to and more easily maintained so that it soon would become just a relatively minor nuisance…and that most certainly has become the case with me.
Emotionally, it did take a few months for me to finally accept the
fact that this is the way I will be for the rest of my life, but that is
a problem also with the internal versions. A urine-filled pouch hanging
from my side certainly is no Mona Lisa hanging in the Louvre, but, for
me, it is the very least of all the evils of bladder cancer.