Hi Glenn, thanks for sharing this info. I am going to make an appointment with
my urologist (haven't been in yrs because I have been ok) and have a look
inside for cancer and concerns about having an indwelling for 34 yrs now. Did
the DRs at Hopkins say it was safe to keep using indwelling? how long can one
go with using it? would a supra pubic be any better for us after all these yrs?
Thanks again.
Best,
Shirley Bell
www.ShirleyBellDesigns.com
----- Original Message -----
From: gah17...@aol.com
To: ladyno...@aol.com ; quad-list@eskimo.com
Sent: Wednesday, June 02, 2010 2:44 PM
Subject: Re: [QUAD-L] My Dilemma
In a message dated 5/17/2010 6:31:56 P.M. Central Daylight Time,
ladyno...@aol.com writes:
I am a C-4 quad with an indwelling Foley catheter. I have had an indwelling
catheter for 44 years. In the 1960s it was the only way to go. I am a male,
and my urethra has eroded severely. My urologist says that my urethra is
eroding, and suggests I have a procedure called a urostomy. . I would do a
lot of research before I make any decisions. Five years ago I went to a
urologist, he was smart and cocky and told me that he knew that he would find
tumors and bladder cancer. People just don't live 47 years with out big
problems. Well, needless to say after he examined me one of the areas biopsied
came back "low malignancy potential" and he informed me that I had cancer. We
were scared, but God intervened and I feel my life was saved. He wanted me to
have a urostomy and my bladder was to be removed. The next day I got very ill,
he wanted to speed things along, but I felt that my symptoms were that of AD.
He said there was no way and I immediately started to see red flags. I called
for a second opinion, the urologist said there was no hurry and that I should
go to John Hopkins urology department. That is exactly what I did. After
meeting with the number two man in the department, he recommended viewing the
biopsy slides and we were to return in three weeks. I returned and the first
thing he said is "I have good news, you do not have cancer". He saw no reason
for me to not use the catheter. He performed a procedure called Urodynamic,
which measures the amount of urine your bladder can hold. Mine is holding less
than an ounce of urine.. Mine holds about the same. So now he wants to remove
my bladder, and make me a new one using part of my small intestine. During this
procedure, both ureters are relocated, a new bladder is made, and urine as
directed from the body through a stoma in the abdomen, which connects to a bag
that adheres to the skin. I am going to the hospital on Tuesday to have an MRI,
to make sure that it's safe for me to have this procedure because I also have
Crohn's disease and disturbing my small intestine, may cause my Crohn's to
flareup (which is a very terrible thing).
. One Big issue is UTI's and with this procedure name may be more
prevalent.
My dilemma is this: I have to choose between having this very invasive
surgery, and all of that may come after it including infection from many
sources, including the new bladder, ureter relocation, the stoma, and skin
irritation from the adhesive for the bag, and not to mention the Crohn's flareup
Or.
I can wear incontinent briefs. I also had problems getting wet when I went
to the hospital. Since I has gone to using 2 ditropan 5mg each day morning and
evening, and started to take two tablets in the morning, two midday and two at
night a day or two before a cath change and for two or three days after the
change. Today I am dry 90% of the time. Which I don't have anyone to change
them, because there's just me and my 80 year old mother, living together. .
sometime life sucks! She won't be able to change them throughout the day. I
have an aide comes in the morning and gives me a bed bath and get me in my
wheelchair. The rest of the day, there's just me and my mom here until bedtime
(around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag
is usually not emptied from morning to night. . I usually have someone around
to empty my bag, but you may want to look into a leg bag emptying system if
possible. My mom cannot handle me to change briefs, and if they're left on, I
would have all types of sores. . at the least I would try the double ditropan
if the doctor OKs it.
Does anyone on this list have a urostomy? If so, how is it working for you?
I would love to hear what others have to say regarding my dilemma.
Glenn Henry
