I’m writing this post in word on November 24, 2013. I don’t dare post it publicly for fear of
jinxing it and….because it is still too embarrassing. Not as much so as it was 530 days ago—not by
a long shot but still, I’ll feel more comfortable going public with this part
of the story when it is in the past. I
need to go public because 530, well, maybe 520 days ago, I combed the internet
looking for stories like this. The ones
where a 39 year old gets colon cancer and a colostomy and lived to tell about
it….meaning the cancer went away and so did the colostomy. I wasn’t suicidal, but I sure as hell did not
want to live and I needed to hear from someone that it was going to be ok. There weren't too many stories like mine, but there were a few and now it is time to fisnish telling mine.
On June 11, 2012 I had a colon resection to remove a T4
tumor from my colon (and uterus, ovaries, etc) Prior to surgery I was told they
would try to keep one of my ovaries so I wouldn’t enter total menopause and
that I would not need a colostomy (whatever that was). I woke up and the first thing I asked my
husband (still completely doped up and in unbelievable pain at the same time) was“were
they able to save my ovary?”. I’ll never
forget the look on his face. So
incredibly guilt ridden that he didn’t have good news for me. I was sad, I was afraid of menopause; what it
would mean for my body, hormones, sex life, etc. But, it wasn’t the end of the world. I was surprised he was so sensitive about how
he conveyed the bad news. Until I
realized that the guilty face wasn’t so much about what they took as it was
about what they added. They were unable
to avoid the colostomy. Warning: This is where it gets pretty gross and
somewhat graphic. As I pulled down my
blanket and pulled up my hospital gown I saw a clear plastic “bag”secured wiht a strong adhesive to the
left side of my belly button. Through the
clear plastic I could see what I later would realize was a new “rectum”
sticking out of my belly. It was about 2
inches in diameter and protruded out of my belly by at least an inch. It was horrific. Looking at it made me sick to my
stomach. I hated the sight of it and I
hated myself with it sticking out of me.
I instantly considered myself a complete freak.
Here I was recovering from cancer surgery and I still didn’t even know what stage I had or if I’d live or die, but that was only slightly more
awful to me than what was going on with my colostomy. Doctors would come in and say “oh, you’ve got
great bowel sounds” and when it actually started working, nurses would come and
empty this bag hanging off my belly into a plastic cup. It was absolutely repulsive. I felt so humiliated, even though no one ever
made me feel ashamed about it, but it was such a new and humbling experience
for someone to go through.
After I got
released, Ostomy nurses came to visit me
a few times a week for about 3 weeks.
They helped me change my bag and
taught me to do it on my own. In time
the opening did shrink a bit and I found some supplies that made the experience
slightly less terrible. For one thing, I
ordered bags that were not see through so I didn’t feel so ashamed getting
undressed in front of Wes and I could let Garrison come into the bathroom with
me without giving her nightmares or having all sorts of embarrassing
questions. I told her it was a bandage
for a “bad boo boo” I had, and in a way
I guess it was true. I also switched
from “drainable” bags to one piece, closed pouches. If you are one of my friends reading this—you
don’t know or really need to know what I’m talking about but if you are like I
was 520 days ago, looking for something to make you hate your new life as an
“ostomate” less, I will tell you that the drainables were hell. The main reason I changed was the um, consistency
made it sort of impossible to drain it (drainables are basically a bag that you
either clip closed or use this Velcro type closure and when it is full, you
open it up and empty it into the toilet) it sort of sounds like an easy enough
endeavor but in reality it sucked. It
always splashed up and as I mentioned above, if it is too thick, well, it is
just a real pain in the ass. The first time I went out in public was the day of the Derecho where
most of DC had no power and everyone in the metro area was at Tysons Corner
charging their phones and trying to eat.
It was 105 degrees outside and I had been to the ER just two days before for
severe dehydration and we had an 8 week old so we had no choice. While we were at lunch, I went into the bathroom
at Slades and emptied the bag into the toilet.
The smell and noise were a pretty instant give away, but I was so sick I
didn’t care. There was a line waiting
for a stall when I got out and the woman who was next walked in the stall
turned right around and left, making some disgusted comment. I washed
my hands and went back to my table. This
was my new reality. I was a freak who
ruined bathrooms.
So, I switched to closed pouches. That way you could at least just take the bag
off and put it in another plastic bag and throw it away. Throughout the year and a half I had my
colostomy I tried lots of different products but usually used the one piece
(except when I was doing chemo or radiation and would have bad diarrhea and
then I used two piece closed pouches since that was easier on my skin). One piece bags (well, all bags, really) work
by using a heavy duty adhesive to keep the bag in place around the stoma (the
new rectum is called a stoma). A one
piece bag should be changed about every 24 hours. More often than that and it can irritate your
skin, less frequently and you run the risk of the adhesive breaking down and
getting a leak. Two piece bags (and the
drainable bags) are designed to be changed every 3-5 days. They are much stronger and therefore much
harder on the skin if you change them too frequently. With a two piece, the bag actually adheres
either through another adhesive or with a clip system to the main
appliance.
Needless to say, as time went on, I learned to accept my new
reality, but I still usually hated it. I
was happy to not be chained to the toilet when chemo or radiation made me shit
my brains out, and there was a (very small) part of me who appreciated not ever
needing to take time out of my day to um, got #2... much less in public—even though I basicallywent #2 in public all the time with the colostomy. It was a
little funny when I could joke to people who knew my situation that I was
“shitting my pants right now”. But often
the bag didn’t work the way it should, or should I say my bowels didn’t work
the way they should, which should be no surprise since they were the reason I
was in this mess to begin with.
Basically I had big issues with leaks.
I won’t go into the detail but there were times that I would be in a
meeting and I could tell the bag had just come off and I could instantly smell
shit. It was awful. I had to change the bag much more frequently
than was preferable and my skin was a mess from it. My confidence was at rock bottom and I was
constantly trying to figure out bathroom logistics at every off site meeting or
social situation I was in. You’d be
amazed how many bathrooms have no paper towels for example, going green really
screws with an ostomate with a leaking bag.
Ideally, you’d have access to a sink to change your bag, but most
bathrooms only have stalls and very little space to work with all the products
I needed to lay out. I’d be lying if I
said I hadn’t changed many a bag in my car, praying someone doesn’t walk up to
my window and think I’m some freaky pervert with my pants unzipped and a big
bag of poop. Anyone who knows me in real life has undoubtedly seen the enormous purse I haul around so I can accomodate my countless supplies including bags, scissors (to cut the bags to the right size) paste (to help the bags adhere better), diposable "diaper bags" (so I could put my bag in them and try to contain the odor when I threw them out), paper towels and baby wipes.
I dreamt of the day I could get it reversed. I’d been promised
I could do it after chemo. Then I was
told I’d need 5 weeks of radiation—ok, a slight delay. Then I couldn’t do it until my PET scan and
that couldn’t be done until 8 weeks after radiation. Finally I saw my surgeon in April hoping to get on the
schedule. She recommended I wait for a
second PET scan. I lost it. It was almost a year since I had gotten it
and now she wanted me to wait at least another three months, “in case it (the cancer) came
back”. I don’t know if I was more upset
about waiting longer or the notion that it would come back. I hated her.
I felt like she lied to me about needing it in the first place and now
she was making me keep it. Then I just
said fuck it. I figured I’d enjoy my
summer with my kids since the last summer had pretty royally sucked. I’d get another scan and get it reversed in
the fall. I got a colonoscopy in July
and she actually told me that was all she needed and to call her in the fall to
get on the schedule. So in October I
called her and went in for my consult.
She asked me if I had named my stoma—I had read on various blogs about
people doing this—seemed ridiculous to me.
Why would I name something I hated, like it’s a pet or a baby or
something? Hell no. I just want it gone. “Yeah”, she said, “I’ve got some news that’s
not going to make you happy. You’re
going to need two surgeries”. No. No fucking way. She did it to me again.
Apparently the colostomy needed to be turned into a loop
ileostomy before it could be totally reversed.
Apparently it is not unheard of to do it this way—but it was a huge
f-ing surprise to me. I knew ileostomies
were a lot more “watery” than colostomies so I expected it to be easier to deal
with than my colostomy and the plan is 8 weeks after surgery I can get it
totally reversed….I’m planning on January 9, which is where I come up with 46
more days….I had no idea this would be so long and I’m pooped—again, no pun
intended. So I’ll fill you in on the
joys of an ileostomy next time. Of
course, I will probably post all of this at once, so it will be like catching
up on Netflix ; )
November 25, 2013
First Day Back at Work
I went back to work today.
Technically I worked a few hours on Friday but I did it from home so it
really doesn’t count. As of this writing
I have not yet gone into the details of my ileostomy—maybe I’ll write a
“pre-quel” post to this or maybe I’ll just let this post do the describing for
me. Basically I shit my pants today and
had to go commando while breaking our “no jeans” rule at work today (thank
goodness I had a spare pair of jeans in my car….) So yeah, that sucked. Long story short, my bag leaked and I got
shit all over myself. I just don’t have
good luck with either ostomy—leaky bags are the story of my life. If they weren’t I might not have hated this
situation as much as I do—but I can’t go through life like this. My skin is peeling off where the stool has
burned it from the leaks. It sucks. It is the worst kind of burning, itching,
pain I have ever experienced. But the anxiety
about needing to go anywhere and how I will navigate the bag issues trumps it
100%. I am taking Garrison to
Philadelphia tomorrow to see Beauty and the Beast…..I really hope nothing
tragic happens. We are taking the train
so that should help in case I need to use the restroom en route—but I really
can’t imagine trying to change my bag in a train bathroom. I think I might just try to OD on
immodium. Not sure.
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