I’ve been slowly recovering at home for the past 3 weeks, after an 18-day hospital stay following my surgery. On the day of discharge, I initially thought that recovery would be a gradual, day-by-day improving path. The reality is that it has been quite challenging, with more setbacks than I anticipated.
Not having a stomach means that I need to have a feeding tube for a few months, until I’m able to sustain myself enough through oral intake. Currently, the feeds run 12 hours through the night, and provide me with 70% of my caloric intake. As for meals that I’m able to eat, they are quarter portion sizes, and it takes me about 1-2 hours to eat them. Without a stomach, I cannot tell when I’m hungry, nor can I tell when I’m full. Initially, there was a lot of trial and error, eating until I became nauseated, or until I start hiccupping. After 3 weeks of trying, I now have a better sense of what my limit is, and now know to stop eating before uncomfortable symptoms develop.
2. Uncontrolled pain
During the first week home, I struggled in determining how much hydromorphone I needed to take in order to feel comfortable. With my extensive incisions in my chest and abdomen, I needed pain meds to be able to move around. At first, the pain was manageable, but I then developed a new type of pain over my ribs, which pushed me to gradually increase the amount of hydromorphone I was taking. After a week and a half, the pain got so bad that it felt like I was being stabbed in the ribs with every breath that I took. I eventually went to the ER, and after a series of investigations determined that I had a pleural effusion, which is fluid that had accumulated in my chest and preventing me from properly breath. The thoracic surgery team took out 800 ml of fluid (normally there is only supposed to be 10 to 20 ml), which significantly helped with the pain. Unfortunately, it had taken me an increasingly large amount of hydromorphone before that happened. When I left the hospital, I was taking 2-4 mg of hydromorphone a day. By the time I visited the ER, I had increased my consumption to 18 mg a day. For reference, when someone breaks their arm and visit the ER, they are given 1-2 mg of hydromorphone. With the amount of taking, it wasn’t long before I suffered its side-effects.
3. Opioid withdrawal
One particular annoying side-effect of opioids such as hydromorphone is constipation. Despite numerous laxatives, I ended up not having a bowel movement for 4 days, and was started to feel too bloated to eat anything. In a desperate (and foolish) attempt to keep my nutrition on tract, I decided to abruptly cut-down my hydromorphone down to almost nothing. This was a big mistake. I went into full blown withdrawal, with chills, nausea, vomiting, and became generally uncomfortable with muscle aches. After a few days of suffering, most of these symptoms went away, and I was able to eat again.
Now that these events have passed, I’m now able to resume my recovery. I’m still waking up every 2 hours at night because of stiffness and discomfort from sleeping at a 45 degree angle, and I can’t wait for the day when I can have a full night’s sleep without relying on any painkillers. While my full recovery will take several months, I need to be strong enough in 2 week’s time in order to start my second set of chemotherapy.
I’d like to mention that my family has been instrumental in helping me keep my sanity over the past month. I know that there are patients who manage to recover alone at home, and I have nothing but the utmost respect for them. For everyone else, I do not recommend going about the recovery alone for the sake of your physical and mental health.