Power Moves

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.

Stay tuned.

Life Right Now

All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another. -Anatole France

A whole lot of change will be happening soon. I will discuss more when I can.

Decisions

Recently I heard someone say, “The hardest decisions are usually the ones that turn out the best for you,” and I truly believe that now. Here I am, at twenty-six, making the most difficult and life-changing decision I will ever make. How do you decide at such a young age to change your body in a way that will affect what you eat, what you wear, or who you date for the next fifty-some years?

Some people take much less time to make this decision and I laud them for that. But others go their whole life living in pain and uncertainty just because they think having an ostomy is the end of the world. Somehow, people with Crohn’s deal with shitting themselves, going to the bathroom thirty times a day, losing weight, losing their hair, and every other damn thing this disease does to them, but they are afraid to live with an ostomy. The consensus from everyone I have talked to who has had a colectomy or proctocolectomy is, “I wish I would have done it sooner.” The reality is, you can either make the adjustment and deal with it, or put off living the rest of your life for a cure that may or may not come someday.

I look forward to the day when my arms and legs are no longer bruised, when my stretch marks fade, when my hair grows back, when I don’t have dark circles under my eyes, when I don’t wake up with a nightstand of pills next to me, and when my body feels like it's mine again. But even more importantly, I look forward to the little things like watching my nephew grow up, traveling to visit my best friends scattered throughout the world, and living the life I imagined for myself before the word “Crohn’s” was a part of my vocabulary.

There's a lot to process right now.