There I was in January 2008 having just received the news that I had Crohn’s Disease. I didn’t know what to think. I hadn’t noticed that I had a disease, I was just living my life. What did this mean? What shape would my life take? Would anything change? The reality of Crohn’s still wouldn’t settle in for a few more years. I had made up my mind that I would live like I always had. I hadn’t done to bad thus far right?
In my typical way I researched the hell out of it and tracked everything. Things that I would have forgotten go logged and tracked and I noticed more about my body in those few months afterwards. Back then although there was information online – it’s not like it is today. We have grown so much in these past few years.
I found communities, and information galore. I was overwhelmed and obsessed. Up until then I don’t think I really believed that I had Crohn’s disease. I read the symptom list and I didn’t see myself in it. Crohn’s typically is known as a bathroom disease and I wasn’t going too much! Sure I had some diarrhoea here and there, but I didn’t perceive it as anything abnormal. In truth I was more likely to be birthing out a log for 30 minutes with the feeling I wasn’t done, or false urges. Which I wasn’t seeing even mentioned in the symptom lists. In large, Crohn’s symptoms have displayed gradually since then, and always in different ways. No two flares are ever the same for me and in my opinion are graduating in the way they affect my life.
Through my tracking logs Dr. K eventually made recommendation to try medication. I still wonder if it was the Crohn’s that came first or the medication that caused the Crohn’s? In truth I think getting a diagnosis that actually waked me to the fact that I was completely ignoring the small ways my body was telling me I wasn’t ok.
In that first year I went through Imuran, Prednisone, and Entocort. None of which I could tolerate in the least. The nausea was just too great and my tolerance of it way to low. Meanwhile my iron levels just kept getting lower and I earned the term “moderate to severe” Crohn’s. I started going to iron infusion as an outpatient at the hospital. It seemed that my life was spinning downwards in this slow fashion and there wasn’t anything I could do about it. I was trying to make changes, and largely felt that my life started to off the rails the day they gave me the diagnosis. Up until then I had felt fine right? At least that’s what I had thought. Coming to grips with the diagnoses was not easy that first year. I kept wishing I would wake up and this would be some bad dream – and that’s to say I knew I had gotten a better deal than others. Talk about mixed emotions. I was furious on the one hand and truly grateful in the other – I was stuck in the middle, on this snail paced ride unable to react.
Enter my year on Methotrexate… As my symptoms and blood work showed little improvement and my tolerance to previous medication wasn’t helping Dr. K put me on Methotrexate. One of my mother’s friends, a neighbour of ours was a nurse and she for the next year of my life let me come over to her house so she could inject me with B12 and Methotrexate. She even tried to teach my mother how to administrate it. I was getting it by injection once a week. My mother took one look at her friend jabbing my thigh with that needle and almost fainted! She just looked at me all pale-faced and said “You are on your own on this”. I just want to say metrotrexate for me is the reason I can never give myself an injection by needle (syringe – not pen style). I developed the most pavlovian response to needles where I become extremely nauseated when I see needles.
The next year of my life was this: I didn’t go out, I lost touch with almost everyone… this was the course of my life, I would get the injections on Friday evenings right after work (back in 2008 I had the fortunate circumstances to land a wonderful administrative desk job). I would be in bed sick beyond all belief Saturday and Sunday, and have recover enough to stick a smile on my face and pretend I was grand for Monday through Friday, and then repeat. Finally at the ending of the year I couldn’t live like that anymore because it wasn’t living at all.
It was then that Dr. K suggested Remicade. Although telling me about the medication he seemed quite concerned with the financial ramifications that came along with it. If I hadn’t had the coverage I’m not sure what would have done. My coverage as I had found out by then covered 80% of my prescription drug up until I had spent $3000 out-of-pocket to where it switched to 100% coverage. I can’t remember the last year I actually spent less than $3000! So off to Remicade I went.
I loved Remicade! This was the first medication that I literally had no side effects from. It seemed like an easy trade-off, once a month head into the infusion clinic (there are three in Ottawa) sit for 3-4 hours being hooked up to the IV. I was very fortunate to have a chosen a smaller clinic. There were three chairs, and one nurse, Pam. They even tried to book me with the same people if they could. We became a small little family. We didn’t all have Crohn’s. We had a myriad of different conditions but we enjoyed the time together. Then in the fall of 2011 the worst symptom (in my mind) gradually took up residence. Fatigue!
Up Next: What do you mean you can’t put pants on?
Lesson Learned:
- Take the time to listen to your body. In today’s faced pace lifestyle valuing the lost art of listening and slowing down is not encouraged. Push harder, be more determined.
- Health Insurance is so unbelievably valuable. My first career had no health coverage benefits at all, I couldn’t imagine what I would do if I was still at that job.
- You are not alone!
Fearless in Sickness 