I can't believe it's been a week since the completion of my step one J-pouch surgery! I'll share the highlights of this past week below. If you are not into suspense and want to know the answer to Where am I now, I am actually on a deck overlooking the beach, sitting under an umbrella. There have been many ups and down this past week, but overall, I am doing fine and feeling good.
In case you aren't already aware of what step one of two entails, the purpose of this surgery is the following:
1.) Remove my entire colon, appendix (a casualty of any colectomy) and rectum
2.) Construct a j-shaped pouch out of the end of my small intestine
3.) Staple this internal pouch to a small rectal cuff in my anal canal
4.) Create a temporary loop ileostomy
All in a days work, right? My surgery was robot-assisted laparoscopic and took over 6 hours from start to finish.
Once I woke up in recovery, I wanted answers! I asked my recovery nurse if surgery went ok, if they constructed the pouch, how many incisions I had, if I had any large incisions, if there were any surprises during surgery, etc. In hindsight, I doubt this person was even in the OR with me and therefore questionably qualified to provide accurate answers, but nevertheless, I seemed satisfied with whatever she told me, or was just so zonked out from the pain meds that I drifted back to sleep.
I woke up more once I was situated in my hospital room. My nurse asked me what I would like for dinner. What? I can eat? Yes. I was on a low fiber/soft diet. I had zero appetite, but ordered cranberry juice, water, ice, saltines and cottage cheese. While "dinner" was on it's way, she asked me if I would like to go for a walk. I read up on how important walking is so I jumped (metaphorically speaking) at the chance to get a walk in so quickly.
My distance of my first walk was fifteen feet, MAYBE. After the nurse secured my catheter and drain, unhooked my IV stand from the wall, and set up the walker to be the appropriate height for me, I was already exhausted. While standing up, I started to really notice how sore my body felt. As someone who has a high pain tolerance and a pretty positive attitude, I want to make this point super clear - despite whatever pain medication I was on, I was still in pain. Everything hurt, especially my abdomen and shoulders. Breathing, moving, not moving, whatever. It was a strong, constant, aching pain. I have never felt anything close to it before. Since I was up and felt this walk was absolutely necessary, I went ahead and walked (read: slowly shuffled) with my nurse out of the room and across the hall using my walker, only to turn right back around and call it a night.
Back in bed, I lifted my hospital gown and looked at my abdomen. On the right I saw my ileostomy, a 1/2" incision at my hipbone and maybe a 1/4" incision at my lowest rib. In the middle I saw my belly button had surgical glue in it, and I could see a couple of dark stitches on the very top. On the left, there was one 1/2" incision about an inch under my ribs and a drain sticking out of my left side (basically a tube connected to a clear, plastic ball filled with blood.
I sipped cranberry juice and ice water which tasted great and actually ate three saltines and two spoonfuls of cottage cheese. I expected nausea, vomiting, something bad but nothing. Dark liquid began coming out of my stoma but I was assured that everything looked normal.
I fell asleep. Day 1 was over.
I stayed in the hospital for three more days. Two and a half, really! During this time, I slept a lot, my catheter was removed, my drain was removed (they waited for the very last day to take this out), my ileostomy bag was changed twice - once with the rod my surgeon inserted to prop up my loop ileo and once without, so my loop ileo surgical rod was also removed, I started eating more from the low fiber/soft diet (more on this later), I showered with a lot of assistance from my nurse, I was set up with a home WOC nurse who would be visiting me once I was settled back home, I walked more and perhaps most interesting - I learned that during surgery they pulled my colon out through the tiny incision made inside my belly button. Pretty amazing.
But far and away, the best news came on my last day in the hospital. My pathology report came back with no surprises. UC diagnoses was confirmed, no signs of Crohn's disease or cancer. I teared up from relief and happiness. My decade plus struggle with UC was over. Although I didn't think I had Crohn's (or cancer), there's nothing like receiving a pathology report back, post colectomy, that states this news because inflammatory bowel diseases are poorly understood. Misdiagnosis isn't extremely infrequent and is always a possibility. No more UC - thanks surgery! - no Crohn's, and no cancer! Time to celebrate with a little apple juice.
The past several days at home have gone well. I am in awe at how my body is recovering and how good I feel given everything my body underwent a mere week ago. Perhaps it's thanking me for ditching my diseased colon. I've gotten a little more used to having zero abdominal strength and have perfected the motion of literally rolling out of bed. I go for regular walks, I drink a lot of water, I practice a TON of patience with myself, I am honest as it relates to my physical limitations these days. While I'm sure there will be more obstacles in the coming days, weeks and months, I am very fortunate and proud of where I am right now.