It is hard to
believe that is has been a little over a year since I had my ileostomy surgery.
Looking back that was such a hard decision to make and go through. I
remember going to meet with my surgeon and hearing that an ileostomy was
basically my last option surgically next to a transplant which wasn't possible
at that time. With the frequency of the clean outs combined with the large
amount of medications needed, I was basically headed towards the end of a
cliff. Something would eventually have to be done; I couldn't continue to live
how I was currently living at the time. The downfall to having the ileostomy
surgery was my gastroparesis and decreased motility in my intestines due to the
paralysis was that there would be no knowing as to if the surgery would work.
Sitting in that surgical consultation, the room was honestly spinning. I
knew years before that my GP would affect me in greater ways but I never
expected to be hearing news such as this. I had just gone in for another
colectomy. I just wanted to have the remaining eight inches of my colon
removed and have my small intestines connected to my rectum or even
have a J-Pouch created. I was not ready for this. Ostomies were
unattractive, foreign and just scary to me.
Over the next couple
of weeks, I struggled with finding peace about having the surgery. How would I
personally deal with living with an ostomy? How would my life change? How would
I look? How would other people perceive me? It was one of the hardest
times in my life. When making the decision to have my colectomy, I
immediately had a peace about the surgery but I didn't have a peace about this.
Finally, finally, I had a peace about this surgery. I realized that
it wouldn't change who I am. I would still be the same person; I would
just have an ostomy bag attached to my side. Since then, I have actually grown
a bit as a person. Going through that whole experience made me stronger and
less worrisome about others opinions.
Along the way, I
have encountered some negative comments about my ostomy and how I dress which I
suppose is just par for the course. Just like in life, with any disease, you have
to grow "thicker skin" which isn't always easy and can take quite
some time. You just have to look the other way and just things go. When I
was being fitted for my ostomy, they explained that I would live in
athletic wear because it would be the only thing that was comfortable.
They weren't kidding. Jeans, khakis, dress pants are all painful for me
now. Because I am a short person and have much of a waist, so there
isn't a lot of room so when I sit down. My clothing bunches up under my ostomy
and causes pain and can eventually result in havoc in the end. It simply
isn't worth it most times. Athletic pants fit right because I can adjust
them and they are soft. I live in loose t-shirts or sweatshirts because they
are long enough to cover my ostomy (I don't tuck my ostomy into my pants)
and they allow room for bloating which is a multiple times a day occurrence
with my GP. Originally my plan was to tuck my ostomy into my pants or wear a
wrap. I have invested hundreds of dollars into custom wraps tailored to fit me
but they are so uncomfortable for me personally and I find them to
be bulky. They eventually end up irritating my skin from pushing my output
up under the ostomy wafer so I just leave my ostomy bag out under a camisole.
The downfall is that it is more visible but it saves my skin and is ten times
easier not to mention more comfortable. I have received comments that I
need to dress better and more appropriate. Ostomies are offensive. It isn't
true. A lot of comments come from just being uneducated about a topic and
simply not knowing. When I first saw my first ostomy, it scared me. Everyone
copes and deals with things differently in their own ways.
Today I am
completely happy and content with my ileostomy. My original plan was to leave
the ostomy in place for a year to hopefully get a break from the clean outs and
have it reversed in the spring of 2014. However the surgery wasn't
successful and I only had a month break from cleaning out. Do I still want to
reverse my ostomy? NO! It drives me crazy some days and gets in my way but it
truly saved my life by buying me sometime. It actually has some perks.
As for my GP, the
past month of so, I have just been all over the place. I'm being scheduled for
another endoscopy with Botox. My weight has continued to stay at eighty-five
pounds. I have been eating as much as I can but I just can't seem to gain any.
My neurologist mentioned that since the last time she saw me right after our
wedding, I was only down several pounds so she wouldn't fuss at me (my neurologist
is such a cool doctor). I was sitting there thinking oh my gosh, my ostomy bag
was almost full when they weighed me. She would have got me about my weight if
it would have been empty. I truly got away by the skin of my teeth.
I finally called my
surgeon last week after having some bleeding after a colon spasm. During the
past couple of months, the spasms have become more frequent and more painful
not to nauseating. After talking with my surgeon, he explained that I basically
had colitis in my remaining colon. My colon was inflammation and irritation.
How did this happen when I don't even use the organ?! He called in a
prescription for several enemas (Oh what fun this will be considering I
thought this door was closed in my life, no more enemas. I suppose I was
wrong.) that would help relieve the inflammation and irritation. The issue lies
in my pelvic floor muscles. They weren't worth much when I used them due to my
pelvic floor dysfunction. I have hardly used them in over a year and we all know
the story about how muscles become when you don't use them. This should be an
experience to say the least; I'm not looking forward to it. If the enemas don't
do "their job", we're going to go down that road and remove the rest
of my colon. My surgeon explained that normally it was a harder surgery but
since I have already had a colectomy and ileostomy, he could do it robotically
so it wouldn't be as hard. I've been giving it some thought and I am going to
tough it out for as long as I can before undergoing another surgery.
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