Around spring of 2016 things started to change. At first It was first extra pains and cramps, more toilet runs. I was living a stressful life at the time, with a new job and a growing blended family (my youngest of 6 was born in 2014), so I attributed it initially to just the stress. But the pain wouldn’t come down. I started taking some over-the-counter pain meds. The pains would sometimes subside, it looked like the typical up-and-down pattern of a new flare up, so I tried to reduce some stress (as if that is possible), and soldier on. My colonoscopy that winter came out clean, with just a slight inflammation, so I allowed myself not to worry too much. I knew things were getting worse, but I also knew the long term pattern is for it to subside. I upgraded from over-the-counter to stronger meds like Tramadol and Codeine. I consulted with my gastroenterologist and In December 2016 I signed up to a new study which would give me access to new medication for Ulcerative Colitis. For that study I had to undergo more colonoscopies, each one with multiple biopsies and also the use of special ‘abnormal cell detection’ markers that tell if there are any microscopic cells that are not growing right during the colonoscopy itself. The colonoscopy just showed a flare-up, as I suspected, and nothing else. In March 2017 I went on a trip with my kids to visit my family in Israel. We had a great time, but I only was managing because of the pain meds I was regularly taking, which my family did not know the full extent of. Going to the toilet was getting more and more painful. I lost most of my appetite and was starting to lose significant weight, which I didn’t mind so much to begin with - I was nearly 95kg in late 2016, but down to 85 by the spring.
After we returned, the pains started having more significant effects on my work. I decided that the only reasonable solution is to take some time off work, reduce stress, and deal with the flare-up until it subsides and withdraws into remission. I went on what I thought would be temporary disability in May 2017. I didn’t realize then that I would never returned to work.
Two weeks after going on disability I had a day where the pains felt bad enough that I went to the emergency department at our local hospital. As I suspected they just released me with a new course of steroids to control the flare up and nothing more. The next day I felt the pain was getting different, it didn’t feel like just a flare-up anymore, it felt life a start of a fissure almost - an internal cut. I showed up again to the emergency department, and this time was more insistant that they take a more careful look at me.
This time I was admitted to the hospital. I was put on higher doses of steroids, and was scheduled a CT and an MRI for later that week. The pains were better managed by IV opiods, and I settled to find out what was really going on. Both the CT and the following MRI came out
Clean. I met again with my gastroenterologist and it was agreed that the flare up probably has some fissure component to it. I would still be able to stay on the study with the special medication. The gastroenterologist just asked if I mind doing one more colonoscopy, ‘for the study records’ I said I didn't mind and it was scheduled for the next day. This was my fourth colonoscopy with biopsies taken I had in the previous 12 months. All previous biopsies from all the previous colonoscopies came out clean for abnormal cell growth.
The next day I had a pair of doctors waiting for me by my bed after I came back from one of my multiple steroid induced walks around the hospital. They seemed somber. They were particular about my privacy, closing my blinds and looking over to see if there was someone else listening. They asked if I wanted to wait for my wife for some news. I knew at that point what they were going to say, but I didn’t want to hear it. I told them I rather they just tell me, so they did. The last biopsy came out positive for cancerous cells. It was significant, more than just a few cells, and it was low in my rectum which will mean I will probably lose my colon and rectum to get the cells out.
My cancer story now has begun in earnest...
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