July 2015: The time had come. I had organized for 6 weeks medical leave from work, possibly longer if needed. My mother had flown in from Canada to be with me during my hospital stay, and to help me during the recovery phase. I packed my little bag, devoid of any valuables or nice clothes. Just a few items I would need at the hospital. I said goodbye to my dogs and my cat. I took one long look back as I walked out the door, the kitchen counter covered in pill vials, which I left behind. What was going to happen to me?
We got to the hospital later that afternoon, after a 4-hour journey. I took a small bite of my husband’s lemon pound cake and a sip of his coffee, knowing I wouldn’t eat or drink for many days to come. I waited anxiously in the lobby of the hospital for what seemed like ages before they called my name. I got an ID bracelet, and was shown to my room on the 3rd floor, Medical Surgical Unit. Some patients were walking the halls with their thin, frail frames, pushing their IV poles along, many sporting nasogastric tubes, hanging from their sunken anemic faces.
I looked around my space, thinking of how lucky I was to have been given a private room where my mom could sleep beside me in the recliner. I put my belongings away and reluctantly changed into the hospital gown, and sat down on the bed. The radiology department quickly turned up, pushing a wheelchair, and told me I would be going down to fluoroscopy to have a peripherally inserted central catheter placed (PICC line). I obliged.
Once in fluoroscopy, the inner part of my upper arm was surgically prepared and drapes were placed over my entire body. I could see my heart beating on the screen above my head. “We are going to numb the area”, said one of the techs. They injected lidocaine and began digging with a very large needle attached to a much longer catheter. They had a lot of trouble because of how thin and wasted my arm was, telling me it was like putting a catheter in a small child. After a few failed attempts, they produced a specialist, who said he was going to place it. I watched on the screen as the catheter moved under the clavicle, landing in the superior vena cava. “We’re in!”
Once back in my room, the floor nurse came in – who might I add was rather delish – and told me he would be placing the NG tube. “Shit” I thought, “I’m going to gag and puke all over this guy!” Oh well… First attempt tore the tender tissue inside my nasal passage, and caused a pretty nice nosebleed. The other nostril was tried and success! It was in! I spent the next hour gagging and vomiting mucous from around the tube. Then that familiar raw feeling started in the back of my throat. Ouch! How was I going to stand it?!
As the night went on, my nurse brought more and more IV bags, and started my TPN. She fondly called it my “tree of life”. And now I was set up to wait for the big day. My mom got bedding for the recliner, and we found the TV channels which would provide entertainment for the days to come. My new addiction to HGTV’s Property Brothers was about to commence! I would also learn that watching cooking programs was comforting, for it gave me something to look forward to.
The days went on, and we got into a routine. First medical student showed up at 4:30 am sharp to evaluate. 5 am the blood lab. 5:30-6 am the team of surgeons who would be operating would come by to evaluate and give updates. By 8 am the floor was bustling with nurses and breakfast would come to the few patients who got fed. We occupied ourselves with TV shows, social media, and little walks around the halls. My TPN was going well. I felt like my body was happy for the nutrients, although I could feel myself losing more weight. I was now less than 110 lbs. Strangely, I was not hungry or thirsty. My mouth wasn’t dry, even though I hadn’t drank a drop for days. But my nose and throat was so sore from the tube, I needed morphine to get to sleep at night. Although, I couldn’t argue that I didn’t need it. They had already drained 3 litres of green slime from my intestine in the days before surgery…
Finally, it was the day before surgery. My surgeon came in the wee hours of the morning, but I felt more awake than ever. He told me my albumin level hadn’t budged and he wasn’t sure if I should have more time on TPN. I was devastated and panicked. I couldn’t bear the thought of another week with this NG tube awaiting surgery. That afternoon I called the floor doctor in to ask him what the hell was going on… Was I having surgery tomorrow or not?! He went running to the colorectal department to check on the status of my procedure. He reassured me – it is a GO. I gave him a delighted high-five, which I’m sure struck him as strange. I signed the consent forms, and hunkered down for the night.
It was the BIG DAY. My husband was on his way over. I was told the surgical unit will come for me at 10:30 am. Those few hours were long. Scary. My hands and feet were sweating. I was thinking – what if I don’t make it through anesthesia? What if this surgery doesn’t go well? Will I have an ileostomy bag when I wake? What if I’m still sick after all this? These thoughts would reel through my brain until I kissed my mom and husband goodbye, and was wheeled off into the holding area.
There I was, staring down the hall of the surgery floor. To one side, a large window revealed a group of surgeons in gowns under bright lights, performing an operation. On the opposite wall was a rack filled with suture material. I couldn’t help but marvel at the variety! Then I met my anesthetic team and answered some questions. A member of the surgical team came over and held my hand, telling me I would be okay. She asked me to identify myself and then describe the procedure I was to have in my own words. Then I was rolled in. I was asked to move onto the surgery table from the bed. At the end of the room, there was a surgeon already scrubbed in, organizing the open surgical pack. There must have been 200 instruments. My jaw dropped… and then I felt woozy. One of the nurses had injected my port with midazolam. Then a mask descended over my face. She instructed me, “Take deep breaths.” Suddenly the lights went out…
I was slowly coming into consciousness. I opened my eyes a bit, and saw a nurse hovering around me. And then… PAIN, NAUSEA, MORE PAIN… HOLY HELL, my kidneys felt like they were on fire, and that fire was spreading throughout my abdomen! I patted my abdomen to see if I had a bag and felt a mound of something… I have one. Oh well… “GIVE ME SOMETHING FOR THE PAIN!” The nurse refused, telling me I had had enough medication. When I got up to my room, my mom rushed over, exclaiming “No bag! No bag!” I couldn’t even react… I looked at my nurse and said “I am in so much pain, please help me!” The nurse looked at what had been given and quickly determined I could have a lot more… Bless her soul, she took off running and came back with 2 mg Dilaudid, which she promptly injected into my port. Suddenly it was as though my abdomen was compartmentalized, and each unit had pain switch… off, off, off, then I felt nothing, then I slept. I must have slept for 10 hours straight, only waking every 4 hours to be asked “Would you like your pain medication”. Yes. Of course I did.
The next day I felt like I could process information. The surgeon came in and told me I had about a foot of intestine removed from the jejunum (the middle part of the small intestine) and two fistulas taken down. I was in the OR about 5 hours, and in recovery for 2 hours. He told me there was no visible disease in the terminal ileum, contrary to all prior imaging. He said it was not at all what they were expecting. No wonder no one could ever get a biopsy! It wasn’t reachable by endoscope! It made a lot of sense. Histopathology was pending, which would confirm if it was truly Crohn’s or something else. He told me he thought it went very well and I would make an excellent recovery. Once he was gone I focused on my body. I was so bloated and pale. I inspected my incisions. I had two keyhole incisions, one below my left rib, and one above the left side of my pelvis, and then a longer incision around my belly button. I sat up with some difficulty. My abdomen felt hot and fluid-filled inside. I had a urinary catheter in place, and my reservoir was half filled with dark urine. My nasogastric tube was still in, but I no longer cared. Within a few hours the nurse got me up to take my first few steps. I walked a little way, and returned to my bed for more pain medication. I was told I must take 10 breaths on the incentive spirometer every hour I was awake, and needed to walk the halls 5 times per day starting the next day.
Two days post-op, I had my urinary catheter and my NG tube pulled. I couldn’t have been happier to get rid of these tubes!!! I felt a bit stronger, and tried hard to do all the walking that was expected of me. They still had me on TPN but promised some clear liquids later in the day. I was stoked to receive some repulsive broth and jello! Hurrah! I was swallowing something other than my own saliva for a change!
The following day they brought me a tray full of food… Um… That didn’t seem right. I reluctantly located some gruel pretending to be oatmeal and had a few bites. I was really scared to over eat with my intestine healing. The thought of anything solid passing through that freshly anastomosed segment made me cringe! The next day, I attempted solid food. The day after that I ate a little too much at once and it did hurt as my compromised bowel stretched a bit…
One week post-op I was released. My mom and I checked into a local hotel on the doctor’s advice. I didn’t want to go all the way home in case I had a problem. We rested and walked around the resort, and talked a lot. Then my husband took us back home. I saw my dogs and my cat. And my kitchen counter with the pill vials. Pills I wasn’t going to take again for a long long time, hopefully. I put them in the drawer.
I haven’t vomited since before my surgery. Not once. I haven’t felt that crippling, searing abdominal pain either. I have been able to enjoy food. I could probably eat anything now, but I am still careful. I have gained 30 lbs… 15 too many – haha! Though, I can’t complain.
I am alive.