A brief life story of mine is......at about 24 years old I had started
having abdominal pains, usually after I ate. All colonoscopies turned
out ok at first, and they just called it 'Colitis.' Digestive problems
(and colon cancer!! Yikes!) run in my family, so I had enough marbles
up there to keep an eye on things. The pains didn't go away through
the years, and I kept thinking I was just constipated, and I also had hemorrhoids.
(Internal AND external--boy, you haven't lived till you've had external
hemorrhoids BURNED off--totally awake!!) It felt like he took a
lit cigarette to them and put it out on them!! Owww!! ps...hemorrhoids
run in our family and constipation.....and blah blah blah.....
Anyway...to make a long story short, my symptoms grew worse and
worse, and it turned out to be Ulcerative Colitis. I lived for 18 years
with severe bleeding and mucus, and blowing up after I even just drank
a little water. It finally got SO bad, that I was hugging the couch for
3 days with a fever of 103, and my saying...."Oh, I think it's just constipation..."
and a country doctor was trying to treat me, and in the process of not
prescribing the right medications....almost killed me. My husband saw that
my fever wasn't leaving, and I was kind of fading away, so he made a bed
in the back of our cargo van, picked me up, put me on it, and made a 3 hour
trip to Little Rock Arkansas, (in the U.S. where we live) and got me to
an emergency room. I was fortunate to have a team of great gastroenterologists
there. After finding out what was wrong with me--they said that they couldn't
believe that I was still alive when I came in. My WHOLE colon was ulcerated
all 6 feet, and had swollen shut, and any food that I had tried to eat had backed
up clear to my esophagus!! At first they couldn't run a scope as it was
too
dangerous to do so for fear of perforating my colon. So after about 3 days
of high doses of Prednisone (is that a WILD drug, or WHAT!!) but boy it
sure did finally help the inflammation, I was able to undergo a ton of x-rays
with barium. All of the staff would laugh as they saw me coming down the halls
every 4 hours to take x-rays of the barium going through my digestive system,
because they would all say that "You're GLOWING now!!" A little humor
went a long way at that time.....Long story short, I was in there 13 days, and
$13,000.-- later.......I was out. But even after all of that, I was never really
able
to control the U.C. and my gastro doc there kept saying......Terri, you'd
better
have that (colon) taken out......it's going to turn to cancer, and maybe soon!
Well.......you talked about being stubborn.......well, I was too!! I felt
that I'd
rather die with cancer, than 'wear a bag!'' as I put it. Well, a
little miracle happened.
My husband and I were married for 10 years, and I had tried to get pregnant,
but never could. Well one day, I felt nauseated and told my husband, and he
looked at me and said, "Honey--I think your PREGNANT!!" Well, no way--
I thought.......but sure enough.......I WAS!! Moving along about
5 years later,
I always had the thought now that wouldn't it be awful for me to get cancer
and due to my selfishness, leave my little boy with no mother? But, I'd
put it out
of my mind. Until......friends of ours from our church meeting, (a couple...)the
guy
had to have a temporary colostomy--due to his colon--up and bursting!!
He
lived with it for about 3 or 4 weeks, and I mentioned how the doctors keep telling
me to get one, and my friends said, "Terri--it's no big deal!!
Just GET it..." So,
I finally made up my mind to do it, as my rotten old colon just couldn't get
better,
and the Prednisone was probably going to kill me first!! (Know what I mean??)
So, I went on the internet, and was looking up colostomy information--like
you--I wanted to learn all about it before I jumped into it. (I knew that it
would only take one call to my doctor, who would set it up!!), and I saw
this thing called a BCIR keep being mentioned. So, I looked into what
THAT was, and I got a video from the hospital in Florida who performs
the surgery (The Palms hospital) and talked to many people on message
boards who had the surgery. Most people had gone from a colostomy
or illiostomy to the BCIR, and all told me they LOVED the BCIR now.
After much thought and prayer.....I decided to go for it!! I had it done
in St. Louis, Missouri....which is about an 8 hour drive north for me.
I
drove myself there, as it gave me much time to contemplate what I was about
to go through, and I think it was easier for my husband to come up the
night before my surgery in the present situation were in. The day before
my surgery I ate about 3 cans of whole kernel corn right out of the can
that I had brought!! I LOVE it, and knew that I couldn't have it for a
while, or maybe not at all anymore!! By the way--I couldn't believe that
my insurance agreed to this surgery--it cost $80,000.-- Wow!! But,
God
blessed me, and I turned out to be a perfect candidate!! Thank God!!
Well Casey....it's been 3 years ago that I had it, and I'm so GLAD
that I
did. I haven't had any trouble with it, except for a few scary times when
for about 3 or 4 days at a time I have trouble intubating, and I can't get
my tube in. I'm always afraid that I'm making a kink in my valve. But, after
a few days, it seems like I have no trouble at all. I won't say that things
are EASIER with the BCIR--not at all. I usually don't eat out, unless
I know that I'll be going home shortly, so I can intubate there, instead of
in a public restroom (Yuk!!) and it's always fun coming out of one of their
stalls--hoping and praying that nobody's in there with you, and you come
walking out with this gross looking tube which you nonchalantly go to
the sink with, and wash out..........(how embarrassing!!) And I just started
a job working in the office of a veterinary clinic, so I don't eat all day--I
just choose that, I'm sure I can eat and poop in the hour I have for lunch,
but I'd rather not in case it doesn't all come out.......
and it's really hard sometimes--especially when people bring back lunches
to eat there!!! Then I go home and eat like a horse!!
But, we've been going
through a hard time financially at home, and between that and my not eating
at work, I've been losing weight....I've dropped about 20 pounds myself in
the last few months. (I'm 5'1" and am down to about 128.) I'm 45
by the
way.......
But, I wanted to let you know something that might encourage
you!!
When I first had the surgery, I had it at a place that specialized in BCIR's.
The nurses were top notch about it, and I kept remembering that they
would say that at first 'your intestines aren't quite sure how to adjust to
the 'new plumbing' as they had been used to having a colon to do a lot of
the work, but they will start really breaking down a lot more food as time
goes by. I always thought....."yea......right...." as this didn't
make any sense
in my mind.........but guess what!! IT'S TRUE!! As time went
on....I
noticed that I was able to digest more and more things. So now, basically,
I can eat most anything--even kernel corn--but I make sure that I chew it
really good, as they get stuck in my tube-holes if I don't!! (You probably
know all about it!!) A few other things I chew up really good that do
not
break down during digestion are mushrooms and olives, which I
LOVE!!
So, I just chew them more. And nuts I need to chew. And if I eat any citrus
things like an orange, I chew it up, and just pull the pulp out of my mouth.
Otherwise it's like having weeds go through your tube, right?? We've
learned by experience, eh??!! So, in conclusion, no--I wouldn't say it's
easier, but I have my life back (although HUNGRY a lot of the time!! ha
ha!)
but no more pain, bleeding, mucus and bloating, and most importantly--
no chance of colon cancer!!) Casey--I must say that the worst part
of
coming out of the surgery was the weirdness from going to 'normal'
plumbing to having to stick a tube 6 inches into my abdomen. You know how
your valve bled at first?? Well, I would faint every time, and had to
have a
nurse with me to help me learn to do it!! What a weenie I was!!
ha ha!!
