And so, after being sick for over a year and being really sick for over six months, I finally agreed to have surgery. What you read above is exactly the decision I was given. I could either be on a feeding tube for three months while I waited to see if the Stelara worked or I could have surgery and feel better immediately. Neither choice was appealing, but Crohn’s Disease is a jerk like that. Like most other chronic illnesses, it often forces difficult decisions. After a while, you give up being frustrated about whether or not it’s fair, and you just forge ahead since making a decision is the only control you have left.
What really made the choice for me was my doctor’s observation that I was probably already too far gone. You see, when I was 18, in a last-ditch effort to save me from surgery, my doctors gave me a new drug called Remicade. I had one treatment, but I was already too far gone, so I needed to have surgery a few days later anyway. My intestines had been in such bad shape that I was beyond the help of any drug. However, when doctors tried to give me Remicade again a few years later, I had a very bad reaction. It turned out that the one dose I’d been given when I was 18 had been enough for me to develop antibodies and I would never be able to have Remicade again.
My guess was that this time, things would be the same. With Crohn’s Disease, when you get to the point that you can’t eat or drink, it usually means that your insides are so infected that they are closed shut. Anti-inflammatories can help this to a certain point, but after a while, patients build up scar tissue that will also close up the bowels. No medicine on earth can help you at that point. You just have to get the infected tissue removed. Since Stelara was literally the last drug I hadn’t rejected, I couldn’t risk history repeating and becoming immune to it.
And that’s how I ended up finally agreeing to life with an ostomy. It was a brutal decision that took a long time to make and, almost a year later, I’m still coping with it. Keep reading to learn more.