What is a panproctocolectomy? |
It’s a
Monday morning in April, 2014 and I’m finally home after spending Easter and
both my mother’s and my birthday in the hospital. I have convinced myself that being at home I
can rest, work with my computer in my lap, take care of my body and heal. The resident that discharged me gave
instructions to soak the stitches in my bottom several times a day and call or
come back in with fever or anything unusual.
The nurses loaded me up with those huge maternity pads for the drainage
I continued to have.
My body betrayed me yet again. Fluid poured
from my ostomy and my bottom. I couldn’t
sit down anywhere on anything no matter how many pillows or cushions I tried, I
could only lay on my side. My heart rate
stayed high. Eating a few bites of
anything just made me feel sick and made more fluid pour. My belly was glued together everywhere and
my bottom, oh, nothing compared to way it felt.
After having had two children, I thought I had an idea of what to expect
but with all the fluid I had developed and the drain they had put in and sewn
to my cheek, I had an enormous amount of swelling.
By the time
the weekend rolled around again, I was so weak I was getting up to creep to the
bathroom and back to the couch and that’s all.
I had gone through well over a hundred pads soaking up fluid from my
bottom. I was so lightheaded.
Sunday night
things got worse when I started bleeding heavily from my bottom. I knew something was wrong and called the
number for the surgeon. After an hour, I
still hadn’t received a callback and by now I soaked four of those big pads
with blood. It’s midnight; my husband is
in bed having to get up very early for work the next morning. I
called again and this time the resident on duty called back immediately. Sadly, he didn’t give me any good advice even
though I made sure to tell him all the circumstances, how much fluid, blood,
etc. He insisted that it had been far
too long since my surgery for anything to be wrong and I should just put some
pressure on those stitches. At the last
minute he added that if I wanted to go in to a local urgent care, not come back
to that hospital, and have someone look at it to make me feel better he wouldn’t
discourage me. He made me feel as if I
was just freaking out and would only be going in for reassurance. It was almost 1:00 am; I’d be getting my
husband up and possibly keeping him from working yet again. I put
an ice pack on my bottom and tried to rest.
The next
morning, Monday, as soon as my surgeon’s office was open I had a message
waiting. When I spoke to her PA, she
said that kind of bleeding was significant and I most definitely needed to be
seen. What a relief that was! Then to my dismay she said I had an
appointment scheduled on Wednesday morning and I should be sure to keep it. Between ice, very light pressure and pads, I’ve
now gotten the blood to slow but I am still having all this fluid mixed with
blood. There is absolutely no way I can
see what is going on but I can tell the area is swollen so grossly because
nothing feels normal to me. I don’t know
what to do but try to manage until Wednesday morning and figure out how to get
to the office.
My cousin
goes to the appointment with me. I’m
near tears with pain by the time I get on the table and laying on my side
again. My surgeon takes a look and
casually says, “Well, your stitches have come open, we’ll have to pack the
wound.” She motions for my cousin to
take a look and asks if she can help me.
I see the horror on my cousins face as she starts shaking her head and
saying, “UN-huh, no way, not me.” I
still have no idea and think my husband will be able to help me. My surgeon is still casual. She is pulling out some 4x4 squares and those
long q-tip looking things and telling us that twice a day this wound needs to
be packed with an open gauze square but it will heal. I have a lot of swelling but it will go down,
she says. Everything will be okay, it
just needs a little time.
I left the
office with a two small boxes of 4x4 gauze squares, some of the long doctor
swabs and a bag of gloves, none of it sterile, and an appointment to come back
in a month. When we left, my cousin told
me just exactly what this wound looked like, how long, deep and wide it was and
how much swelling I had. It looked I had
four cheeks instead of two. We went to a
medical supply store and tried to find something I could sit on for the ride
home. When my husband got home that
afternoon, my cousin explained it all to him while we all remained a bit
shocked. He tried changing the packing
that night, which ended up being a nightmare for us both. I couldn’t lie on my belly, only my side,
because of the ostomy and surgical pain.
There was no
way the two of us could manage this alone.
Neither of us knew what to do. I understand wanting to make patients feel reassured, that nothing is wrong and not have them panic, but the resident, PA and surgeon all made me feel dismissed, not reassured in their effect to assure me everything was okay. By making me feel dismissed, they took away the power I had to advocate for myself. Has this happened to you?
One of my surgical wounds, not a long incision but I manage to bruise, blister and scab. |
I was in a similar situation, where my wounds would not heal. I knew going in that even the slightest movement would rip them open, and so as planned, they opened and I had to go back again to see the doctor. It wasn't until I began taking better care of myself and focusing on the positive that everything changed for the better.
ReplyDeleteHaving to live with a stoma can be quite challenging
ReplyDelete