A few months ago, when I started my business, I joined a professional association that offered what I thought was a group insurance plan. I felt like I’d struck gold! A group insurance plan would allow me to qualify for critical illness insurance and/or disability insurance.

Unfortunately, the plans available weren’t group plans, and after months of going through my labyrinthine medical history with an agent, every company we approached rejected my application. The agent was disappointed that he couldn’t sell me anything, but the outcome was no surprise to me.

The facts are that Crohn’s disease — especially the severe version that I have — puts patients in an uncomfortable situation. Left untreated, I would probably be dead within a year. Treated with steroids alone, I’d probably die in 2 or 3 years. These are not abstract concepts to me. I have almost died from Crohn’s before, and I don’t want to be back in that situation again. I know what it is like to be in constant severe pain and have no quality of life. If Remicade fails, and other treatments don’t work for me, I would choose euthanasia over dying directly from Crohn’s. (I’ve also let my family know that I want my body donated to science, specifically for Crohn’s research, if that is possible).

Luckily for me, I’ve been OK on Remicade so far. That said, a study of nearly 500 patients that came out in March 2013 indicated that “the cumulative 10-year probability for developing cancer after infliximab [Remicade] was 9%.” Right. I’ve been on Remicade for 9 years now. I have an approximately 1 in 10 chance of developing cancer at any time. This is lower than the chances that Angelina Jolie had of developing breast or ovarian cancer, but still scary! And who knows where in the body whatever cancer I might be susceptible to might appear? I can’t have any surgery to remove potential cancer hot spots if I don’t know where they could be. Plus, my risk of dying of an infection is also high, and it’s not as if I can withdraw from life to avoid exposure to germs. I just have to ignore these statistics and get on with life.

Anyway, the point here is that Crohn’s leads to the same kind of mixture of acute and chronic stress as a cancer diagnosis. My favourite cancer blogger put it well:

There are a couple of cancer euphemisms that I feel need debunking. . . first,  it’s not a ‘story’ it’s real! Nor is it my ‘journey’. . . I’m not going anywhere.

This is accompanied by a picture of her lying on a couch, feeling unwell.

Not to mention ‘battling’ it’s just my body doing strange things. . . I would describe it like this: “Yes, it’s been a fucking nightmarish experience.” (link)

This describes the acute phase of a severe illness very well. The thing to keep in mind is that these dark days never leave you. They inform everyday decisions even during “remission.”

For instance, one thing I keep wondering is what to do if I can’t take Remicade anymore — what if I become too allergic to it, or it just stops working, even with higher and higher doses at higher frequencies? Chances are that I’ll be put on Humira (adalimumab), a similar TNF-α inhibitor. A lot of people with Crohn’s like Humira because it’s self-administered — there’s no need to go to a clinic. Instead, you inject it yourself every 2 weeks. If I’m as sensitive to Humira as I am to Remicade, though, I’ll need to go to a clinic anyway to get a pre-medication to suppress the allergic response (i.e. Solucortef). And if that happens, I’ll be having 4 days of steroid rollercoaster every 2 weeks instead of every 7 weeks, as I’m doing now. That’s 4 out of every 14 days during which I’ll be unable to work at all. In other words, I’d have to go on disability, a financial nightmare. And I don’t want to even think of what this kind of instability in mood would have on relationships in my private life. As you can imagine, I’m really crossing my fingers that things don’t get worse.

Anyway, in case this post is sounding like too much of a downer, I am getting on with life. In fact, I’m going to take the laundry out of the dryer and go for a walk right now.

This entry was posted in diagnosis, disability, finances, friendship, insurance, mortality, partners, planning ahead, relationships, Remicade, steroids, withdrawal, work. Bookmark the permalink.