Dear intestines, it’s not you, it’s me–wait a second… of course it’s you.
The ‘S’ word
The Remicade worked for a couple months. The bleeding stopped. The cramping dissipated. The urgency faded.
But after those couple months, the symptoms returned.
The doctors told me to get Remicade early.
It didn’t work.
- Weird, right? Something works so well for months, and, poof! Just like that, its effectiveness flies out the window. I was told that Remicade was a miracle drug. It seemed to help patients when all else failed. But for some of them, it suddenly stopped working months, even years after they started. I, unfortunately, was one of them. Heck, it just goes along with what seems to be one of the paradigms surrounding ulcerative colitis and other IBDs: no matter what you do, what you eat, what you take and when you take it, the disease is going to do whatever the (bleep) it wants.
With Remicade being on the top tier of drugs to treat inflammation, it was time to restructure my plan with the gastroenterologist. This is when the “S” word was brought up: surgery.
You see, ulcerative colitis is a disease that is treated medically to begin with, but when medicinal options run dry, surgery essentially as a cure. It is either done in one to three stages, by removing the colon and creating what is called a “J-pouch” to act as the replacement reservoir for stool. Patients are known to live a pretty much normal life following the procedure(s), just with a couple more trips to the bathroom each day—the normal is about six times a day.
- Ugh. Six times a day? Doesn’t sound very pleasant does it? Well, it certainly sounds better than the alternative. Those of you who know what I’m talking about can relate.
I learned all of this on a visit to a surgeon within the same medical group—the same that operated on my brother, who has Crohn’s disease. He got several feet cut out of his small intestine, used an ileostomy bag for about six weeks before his insides healed and his “plumbing,” as the surgeon phrased it, was plugged back together. My operation would be similar in terms of carrying a bag around for x-amount of weeks between surgery phases.
(This video is not of me, just a similar procedure–and feel free to stop around 2:20!)
Speaking to the surgeon was very informational but, most of all, eye-opening. It helped me understand what may possibly come next and, if that was the next step, how and when I would go about it.
But surgery scared me. I didn’t want it. The thought of having an ileostomy frightened me and it sent chills up my spine just picturing it.
Not only that, but I had college.
- Would I need to miss a semester?
I had work.
- Will I be able to keep my job?
I had a girlfriend.
- Would she be disgusted by me?
I wanted to keep up with the Remicade and try to assuage my symptoms medically—or try to, anyway.
I was put on an additional medicine, an anti-spasmodic, to alleviate the urges to go and make daily life a little less hectic.
But it didn’t get much better.
And then it got a heck of a lot worse.
The ‘B’ word
Near the end of fall, late November, was my four-year anniversary with my girlfriend.
- How about we finally give her a made-up name. How does Ellie sound?
Let me tell you about her.
We originally met at McDonald’s, our first job, during orientation. We always seemed to have break together, and those short conversations turned into texts, texting turned into coming over to help her with homework, and helping her with homework turned into my first kiss and first serious relationship. It marked the beginning of the happiest, fullest, most lively and passionate time of my life.
Throughout our relationship, Ellie was always there for me, always there with me; she understood and was patient with me; she didn’t judge and never made me feel uncomfortable or awkward because of my disease, including the long periods of time I would hunker down in the bathroom. She brought me the most happiness anyone had ever before and I wanted nothing more to spend the rest of my life with her. With college winding down, she would tease at her desire for me to propose. There was no doubt in my mind that I wanted to be with her and only her as long as I lived.
But then things took for a turn toward disaster.
One day, I got a call explaining how she started to question things, how she liked hanging out with another guy and how she was losing grasp of the love she once felt for me.
I was crushed. Confused. Perplexed. Scared. Hopeless.
A few days later, I was in the emergency room with strong stomach pains. It was there that she said she no longer wanted to be with me—through texts, that is—and brought up the dreaded “B” word: breakup.
- Four years… Poof.
It’s safe to say my stress levels went through the roof. Stress and colitis? Yeah, they don’t mix very well.
My previous symptoms were exacerbated and I started developing new symptoms. My body began to ache and cramp not only in my stomach, but my bones and muscles. My knees and ankles felt like they were deteriorating, and I started walking around with a limp. My entire self, body and mind, felt like it was deteriorating. I was the weakest, physically and emotionally, I had ever been.
I was put on prednisone, and that didn’t even help. Instead, I woke up with a swollen face, barely being able to mutter a coherent sentence, being afraid what would happen next and struggling to find an answer.
- Sometimes it isn’t the answer in life you need to find. It’s simply the how: the “how in the world am I supposed to get through this, and how can I make it the best situation possible?” In life, you make a lot of decisions; but, no matter how hard you try and forge your own path or figure things out on your own, some pretty terrible things will happen. You can’t avoid it. But you can try to handle it the best you can and try to extract whatever good you can out of it so you can come out of suffering, pain, discomfort, confusion, hopelessness or heartbreak stronger, smarter, more mature, appreciative, willing, accepting and ready to take on other unforeseen challenges in the future. Because it’s going to happen, whether you like it or not, whether you plan it or not and even whether you deserve it or not. Because sometimes, life—to put it simply—sucks. But stand firm: no matter how lost you may find yourself, no matter how worthless you may feel and no matter how much pain you may be enduring, there is always hope. Hope for a future. Hope for a future better than you could ever imagine. Because it’s going to come… whether you like it or not.