My First Stoma-versary

A Reflection on Halloween 2019: My Colectomy

During the month of October 2019, my ulcerative colitis flare had taken a quick downward spiral and I had been housebound all month. I was in the bathroom as much as 20 times per day and wearing an adult diaper daily (which usually proved to be a wise decision at least once per day). It was earlier in the month I had told my gastroenterologist, Dr. Sakuraba, that I was done with medicine and ready for surgery. (I had already proven invincible to Remicade, Entyvio, Humira, a trial drug (Neihulizumab), and Xeljanz.)

Mid-month I met with my colorectal surgeon, Dr. Umanskiy to discuss plans for my Halloween surgery. My hope had been to end up with a j-pouch (ileal pouch-anal anastomosis), which involves removal of the colon, a temporary ileostomy (ileum of small intestine brought to the surface for waste to exit body), and eventually being reconnected internally, with a portion of your small intestine having been recreated as a substitute for the rectum. Dr. Umanskiy made no promises. It would all depend on how surgery went and what condition my insides were in. Had I been well, it probably all would have seemed scary, but when you’ve been in such bad shape, you’ve wished you would die to feel better, surgery isn’t so worrisome, it’s your only hope. 

After my last-ever Gatorade-Miralax colon prep and a miserable night of not sleeping, it was go-time. My cousin Lindsey, a nurse practitioner who worked at the University of Chicago at the time, picked up my mom (they’re neighbors) and they headed to Valparaiso to pick me up. (Lindsey later told me that the look on my dad’s face that morning as he waved goodbye to Mom and her from the backdoor, was of sheer worry. Awwwwww.)

It was still pitch black out and it was icy cold and pouring rain as I left my condo with my backpack filled with everything I thought I’d need for a comfortable hospital stay. Yeah, just like vacation, I overpacked. But at least when you go for a planned hospital stay you have the opportunity to overpack! (Pro-tip: if nothing else, take your own pillow.) Usually the one-hour or less drive from my place to the University of Chicago Medical Center goes quickly… that morning it was the longest drive of my life. I recall trying to pass out with the hopes that I’d wake up and we’d be there, but then I couldn’t get comfortable, so I just mostly stared out the window into the dark, cold, wet morning.

Finally someone came to take us to pre-op. This is where things start to get fuzzy. This is when I knew it was safe to quit acting so damned strong. I just couldn’t get up, I couldn’t think about moving. Mom told the young lady that we were going to need a wheelchair. Of course Mom then had to direct the staff member that I was the one that needed a wheelchair because evidently if you can’t see a person’s challenges on the outside, they don’t exist. (Ninety-nine percent of the time, when my mom attends medical appointment with me, those who don’t know us assume that she is the patient.) Somehow I made it into the wheelchair, and off we went. The pre-op area smelled of plastic - the kind they make light-use garment bags out of. Turns out it’s because every patient gets a commemorative University of Chicago Med garment bag to store their stuff, which is well worth the cost of admission. 

My sister Anne, the veterinarian, was to meet us there. She lives northwest of Chicago in West Dundee. I remember being absolutely miserable and I feel like we waited forever and I kept asking where Annie was. It probably took her longer because she had to go past/through Chicago to get to us. And it may have already been snowing by then. I recall later learning that it was a very snowy Halloween that day. Anyhow, being a veterinarian, Annie has often joked over the years that if I was a dog, she would’ve humanely euthanized me long ago (yeah, our family has sick humor). I had mentioned that to my surgeon, so I’m sure he was looking forward to meeting her. 

Finally someone came to take us to pre-op. This is where things start to get fuzzy. This is when I knew it was safe to quit acting so damned strong. I just couldn’t get up, I couldn’t think about moving. Mom told the girl that I was going to need a wheelchair. Somehow I made it into the wheelchair, and off we went. The pre-op area smelled of plastic - the kind they make light-use garment bags out of. Turns out it’s because every patient gets a commemorative University of Chicago Med garment bag to store their stuff, which is well worth the cost of admission. 

I remember that once I was in my hospital gown they insisted that I pee in a cup for a pregnancy test. I couldn’t make it to the nearby restroom under my own power, so back into the wheelchair I went. I hadn’t had liquids in many many hours, and peeing proved impossible. Eventually, since they are not allowed to take one’s word for it, they tested via a blood sample, which takes a bit longer. I do remember several people of the surgical team coming in and out to introduce themselves and gather information. I particularly remember Dr. Skowron, a really cool female medical student of some level, perhaps a fellow, who I’d end up seeing almost daily during my stay (and she was on the team for my May 2020 surgery too). I vaguely remember bidding adieu to my mom and sister and being wheeled out of pre-op, through some cold hallways, and into the operating room. 

I’m sure time didn’t pass so quickly for my family, but the next thing I know, I was in and out of consciousness in post-op. I was in pain; my whole abdomen hurt. A nurse kept putting some sort of a remote button in my hand and telling me to use it. But I was in and out of consciousness and it didn’t click that the magic button was to self-administer pain meds. Mom and Annie were there, and Lindsey was for a little bit at some point too. I feel like we were there for a long time, but I wasn’t totally with it, so maybe not. I remember hearing that we were waiting for a room to be ready for me. 

I remember that once we were at my room, being moved from the post-op bed I was in to the bed in my room was traumatic. I couldn’t sit up (it didn’t register then, but when they slice through your abdominal muscles, moving isn’t easy… especially that soon after surgery). Since I could not sit up or move my abdomen, I couldn’t help in any way. And I don’t like not being in control. I don’t remember much else about that night, but mom stayed the night in my room and stayed the next day too. Mom went home with Lindsey after work the following day.

Now, a year later, the individual days of inpatient care are a blur, but I’ll piece together a few interesting tidbits:

• The surgery was done laparoscopically with DaVinci robotics, so there were a few small slits in my belly where tools had been inserted. I was cut open from my belly button on down a few inches so they could get my colon out of me once it was all disconnected. They stapled that shut, but left gaps in it that had to be packed daily for a few months with packing strip material to help it heal from the inside out. 
• I learned that my colon was perhaps the worst my surgeon ever saw. As he removed my sick guts from my body, the tissue was disintegrating in his hands. The fragility of the tissue slowed things down, adding more time to the surgery. I believe I was under for five or six hours.
• When I first looked at my belly, I saw two ostomy bags and likely freaked out a little. The one on my right I expected, it was my ileostomy where the ileum of my small intestine now exited my body for waste removal (which at some point soon I would learn was permanent and that I wasn’t a candidate for the j-pouch procedure). This is where my GI tract now ended. (I had been marked for surgery two weeks earlier. They don’t just bore a hole in you anywhere, a stoma nurse worked with me and had me sit, stand, bend, and tell her how my favorite jeans fit, to determine the best place for the ileostomy to exit the body.) 
• The ostomy bag on my left was connected to a mucous fistula. My anus and rectum were remaining inside me for the time being, but the tissue was so ill and inflamed, the surgeon made the decision to bring the top of my rectum out of the surface of my belly so that any “ick” could either exit out my bottom or out my belly, an emergency exit of sorts. Turns out we didn’t need a bag on there, it didn’t produce much, but it did produce enough to require changing bandages daily for the next six months.
• Ostomy nurses are amazing specialized nurses and I saw someone from the ostomy team daily to help me learn how to manage my new system. The first day or two when they would come for a bag change, I was afraid to even look at my stoma. The nurses were so understanding and helpful with both the mental part of it, and teaching me how to care for it once I was ready to accept it, so that I was set up to be as successful as possible once discharged.
• I totally forgot until just now, but I had to be topped off with a few units of blood because I was so low due to blood loss just from the flare itself. During one of the transfusions, something went awry and I ended up with a purple arm that remained purple for weeks… maybe months.
• A cool thing about going to a teaching hospital is that there are always opportunities to get involved in research and I never say no. One day during my stay, a clinical research coordinator by the name of Jorie came to visit me. I agreed to her study, and that’s why I’ve been wearing a Fitbit ever since. It’s a study of inflammatory bowel disease patients that looks at bio-feedback stats from the Fitbit and compares them to your health as reported in another app and according to regular lab results. 

Following my hospital stay, Lindsey took me home to the farm to begin my road to recovery, which is another whole blog post that I may or may not write someday. Sleepless nights, leaky ostomy bags, and other fun. In retrospect, adapting to the ostomy life hasn’t been easy, but I’d say I’ve been rocking the hell out of it! And now, nearly six months after my follow-up proctectomy, I’m feeling better than I have in YEARS! Happy one year stoma-versary to me! 

And thus, Halloween will forevermore be associated with the day I was gutted like a Halloween jack-o-lantern.