Today is a good day. I am
writing this from the comfort of my bed on this snowy day in NYC. I have one
dog on my side and the other laying his head across my belly, making writing
near impossible but too dang cute to make move. They can always sense when something
is going on with mommy. At this point im not sure if they knew I had a
procedure done this morning or if they see my suitcase packed in the living
room ready for my trip this weekend and think that if they are able to trap me
in bed I wont leave them. Either way, I will happily accept the cuddles. I am
especially spoiled today because River got a “snow day” and is working from
home. As much as I love these days, I
hate them because all I want to do is cuddle and see him, but he’s got loads of
work as usual. The past few weeks have been majorly stressful for him and we are
dying for busy season to end, #accountantprobs
Medically I have
been feeling overall amazing. Several weeks ago I began having some pain and
tenderness as well as a noticeable ulcer on my stoma. Its hard to distinguish
between crohns pain and a stomach pain or blockage at this point because
everything is still pretty new to me. This time around we are obviously not
going to take any chances with the possibility of crohns coming back and
flaring in my remaining small intestine so we decided to schedule an ileoscopy.
This procedure is essentially a colonoscopy, but considering I no longer have a
colon or a hole down there, they have to go in through my stoma. Yeah, it seems
pretty weird and it took me a while to wrap my head around it. I have no
feeling in my stoma, but it responds when you touch it like a little alien
creature. The thought of sticking something in it gives me goosebumps. Luckily
for me, they knock me out. I always look forward to this part not only because
lets face it, anesthesia is fun and I get a good nap, but I always make a fool
of myself afterwards and I have a husband who finds joy in recording these
moments. Today he asked me what my deepest darkest secret was. Talk about
taking advantage of me at my most vulnerable. My answer was “sometimes I lie
about how much stuff I actually buy online, but at least I look hot in my
clothes”. No joke, I have it on video. These videos of me in the hospital and
during procedures are always nice memories for me to look back on and remember
how things once were.
As for the results
of today, totally normal. NORMAL. When was the last time I was able to say
that? These procedures were always bittersweet for me because I used to pray
that they would find something wrong. How messed up does that seem now? The
worst feeling in the world is when you are in pain and can feel something is
wrong and the tests show otherwise, it was always my worst fear because that
way there is nothing to fix. That being said, my tests always showed there was
something wrong (of course) so I never had to deal with that problem.
Six months. I cannot
believe its possible that it has been that long. I certainly have gotten used
to this lifestyle of being an ostomate, but I have also kind of fallen in love
with it. The list of things I am able to do now that I couldn’t before is
longer than I can say and ranges from large things like not having to wear a
depends (this is the lowest I have ever felt in my life and its very hard to
share) to being able to drive on roadtrips. I am driving to Buffalo tomorrow by
myself and if I didn’t need to stop for gas I would be able to make it the
whole way without stopping. I wouldn’t have dared even attempted this trip solo
before. Granted I have lost some things also. Like the potential to start a
family the way we hoped. I cant even get started on that topic…and mushrooms. I miss them
so much I cant even explain. They are one of the few foods I have had to
officially give up, such a bummer. Something I feel very proudly about is the
fact that I feel no shame or embarrassment about my bag, and why should I?
before the surgery I was paranoid about finding clothes that would cover or
hide my bag, but honestly, who cares? Now I all but walk around and show
strangers on the street. I wish more people were this way, because as proud as
I am of how this bag has saved my life, I know that for some people it has
ruined theres. I think that mentality of the stigmas associated with ostomys
needs to change. Speaking of which, for all my Cleveland friends I have a favor
to ask of you. At the Cleveland film festival on march 18-29 at tower city
there is a documentary called Semicolon; the adventures of ostomy girl. From
what I have read it sounds extremely similar to my life, a young girl who has
battled crohns and ended up with an ostomy. GO SEE IT because I cant and I
really really want to. There is also a documentary called In/Out; my struggles
with IBD that comes out on vimeo March 10. Rebecca is a fellow ostomate who I
am friends with via facebook who had her surgery the same week that I did. Her
situation is a little different in that she is having a takedown surgery and
will be given a J-pouch, something that is sometimes an option with colitis
patients but wasn’t an option for me with crohns. Her story is pretty freaking
inspiring (she ran a ½ marathon for IBD just a few months after surgery) and I
cannot wait to see the documentary. You can also check her out on Facebook or twitter; Rebecca Zamolo, she does all kinds of awesome awareness for IBD
Anyways, this
weekend I get to escape the city and go back to Buffalo. It still feels like
home there and I cant wait to see everyone that we left behind. Of course its
supposed to be like 45 degrees in the city this weekend and like 15 in buffalo…great.
Today was a great
day. And I fully intend to celebrate by watching Shondaland with my husband
tonight.
Hugs, C
No comments:
Post a Comment