I’ve started this blog post at least 3 times. There seems to
be so much to share that it’s overwhelming to me. I’ve decided that I’m going
to post just the snippets – since I’m still very tired from everything.
Unfortunately, I have not bounced back like I have in previous surgeries. This
has been a rough recovery.
At first all went very well. On July 1st I had
the surgery. I got my bag, they cut out a bunch of tumor to send to various
labs and the surgeon didn’t see any evidence of tumor growth when he went in to
create the ileostomy. Unfortunately, I ended up with an ileostomy (I was hoping
for a colostomy). When I spoke with the surgeon following the surgery, he said
that he thought it would be a long shot to put on a colostomy bag. I had too
much scar tissue in my stomach and they just couldn’t make it happen with all
of that tissue.
Another unfortunate event was that my fistula was larger
than they expected and ended up going into my bladder. Therefore, I woke up to
find out that it’s a strong likelihood that I’ll be incontinent on the urine
front for the rest of my life. They could fix it with another bag, but I’m just
not willing to add yet another bag to my life at this time. This discovery was
very hard for me to take and has made recovery harder for me.
I was able to leave the hospital on July 3rd
thinking that all was well. Unfortunately, on July 4th, I was in
excruciating pain and ended up going to UC Davis Med Center. They didn’t know
what was wrong with me and tried various pain meds. After determining that it
wasn’t anything serious, they sent me home (about 2 am). On July 5th,
all went well, but on July 6th, I woke up in terrible pain in my
back once again and so back we went to UC Davis Med Center. This time they
decided to admit me to the hospital to see if they could do further work on me
to determine the cause of my pain.
After 2 days at the hospital, they still didn’t know what
was wrong. They thought it was an infection that couldn’t be treated with oral
antibiotics and they wanted to keep me at the hospital for 20 days to give me
IV antibiotics. Fortunately, my Stanford doctor stepped in and spoke to UC
Davis and convinced them to discharge me.
On Thursday, July 9, I went back down to Stanford to meet
with my surgeon Dr. Shelton to see how things were going and to remove the
staples in my stomach. I was having some kidney problems and so they ordered a
Mag 3 test for me. On our way home, we got a call that the Mag 3 test was set
for the following day – so we decided to stay down close to Stanford. This
ended up being a good move, because at 4 am the following morning, I woke up in
extreme pain once again and for the third time in a week, Pat and I headed to a
hospital – but this time, it was Stanford. There are many stories from my
hospitalization but I was finally released after several days.
The next 3 weeks were tough. I’ve never had such a difficult
time recovering from a surgery. I’ve lost a significant amount of weight due to
multiple factors, including the fact that my new configuration doesn’t enable
my body to absorb as many nutrients from the food that I eat. In addition, I
did not know that it is not only not advisable, but actually dangerous to go
“cold turkey” off of OxyContin. I felt like my pain was under control and so I
just decided that Monday morning to stop taking any more Oxy. This was a very
big mistake. I ended up becoming extremely depressed and tired and just wanted
to sleep and cry. By Tuesday morning, my girlfriend Kirsten who was staying
with me, was having trouble understanding me. Also – I knew that something
didn’t feel right that morning, so I texted my oncologist’s nurse practitioner
to tell her that something was off. When she called to talk to me, she was having
so much trouble talking to me that she ended up talking to Kirsten. Needless to
say, she instructed Kirsten to make sure that I started taking Oxy again (at a
low dose) and told her that I needed to stay on Oxy until they could taper it
down for me. Once the drug was reintroduced into my system, I began to feel
much better. What a scary situation. Over the past 7 ½ years I’ve gone on and
off of countless pain meds with no problem whatsoever. But – this was my first
time on OxyContin. I’ve learned that this drug is unlike any other I’ve ever
been on.
So – I am now tapering off of Oxy, my wounds are starting to
heal and I am slowly getting used to my bag. I’m also starting to learn what it
feels like when I think I need to urinate. Between that and using the bathroom
very regularly, I have avoided the downsides of urinary incontinence.
Rather than continue to work on this post and continue to
add to it day after day – I think I’m just going to stop there so that you’re
up to speed with the latest.
But – I would be remiss if I didn’t end this post by being
grateful for my amazing support network. I had a continuous parade of friends
come to visit me at the hospital and at my home. I had so many people cook for
me or bring me food. My sister and my mom both flew in to hold my hand and get
me through some of my roughest days. And – most importantly, my dear husband
Pat, who changes my wound every day and changes my bag every few days without
complaint – only with love in his eyes. I don’t know how I got so lucky to have
snagged this guy – but I feel like I won the lottery on the husband front.
A huge thank you to all of you who have been there for me,
either in person, by phone, by email or just by sending me your prayers. I am
so very very grateful. I feel like I am now really beginning to heal.
