After receiving the results of my MRI and colonoscopy, I realized my disease has progressed to the point where not even the most powerful therapies nor my diverting ileostomy have been beneficial. The next step is to have a proctocolectomy done.
I don’t know exactly what it is I am giving up with this decision and that is the frightening part. I’ve had my experience with the whole ostomy part but there is no way to predict how exactly this adjustment will play out when I begin to function normally again. I anticipate it will be very hard at times. What I do know is without taking this step to have my colon and rectum removed, I wouldn’t even get the chance to face such difficulties. For me, this decision comes down to one thing; That I have dreamed and planned much bigger things for my life than what these last two years has been.
Right now since being off steroids completely I can see a huge difference in my symptoms. I am still feeling much better than pre-Remicade, but I struggle and most of my activities are planned around my disease. I have adjusted incredibly to living this extremely challenging life where I have little control. This is scary because sometimes it has me believing that things really aren’t that bad. I think, “Well, at least I’m out of the house today” and that perspective is dangerously flawed. Yes, I’m eating, I’m not losing weight, I look healthy. But I have zero freedom.
There’s a lot going on right now. I won’t be receiving Remicade anymore and I am planning surgery as soon as possible, which looks like it will leave me in the hospital at the end of this year. Nothing has been finalized yet but the ball is rolling…
I try to do the best job I can to convey exactly how much this disease has impacted my life, but it is impossible to understand unless you live it. Crohns fucking sucks and after dealing with it for almost nine years, I finally feel like I am getting closer to a place where I can be in control again. An ostomy is not the end of the world for me, it's the exact opposite; it's just the beginning.