When I first wrote about living with ulcerative colitis (UC), I was very optimistic, as I typically am. I had just been released from the hospital and was on a heavy dose of steroids to control my symptoms and inflammation. I was a rookie. I didn’t know what was to come, but I was just so happy to get back to my normal life and be free.
What I didn’t know was that three years later, I still won’t have found freedom from my disease. Three years. Three years of pain, various medications, steroids, colonoscopies, blood labs, tests, trips to Mass General, desperate calls to my doctor.
One of the worst parts about UC, IMO, is the uncertainty of it. No one knows the cause, how your body will react to certain medications, when or why a flare will occur, a cure. Not being able to understand why this is happening makes things more difficult for one reason: on top of all the physical symptoms, it makes me feel guilty. Am I doing something wrong? Should I be taking different vitamins? Spending my money on acupuncture? Should I stop eating gluten? Should I stop drinking alcohol? Should I stop having a life?
I don’t know. No one knows. So, I just keep living, day after day, unsure of when I’m going to be bedridden in the fetal position again.
Despite my struggle with UC, I consider myself truly blessed. I know that God would not put so hard a burden on me that He knew I could not handle. I count the positives in my life, and understand I could have been dealt far greater problems. I am strong, in every sense of the word. My parents instilled that strength and confidence in me, yet they worry about my health more than I do. I accept things as they are. I accept that I have UC, and that I have to wake up and take several pills every day, even though I hate medication. I accept that despite being in my mid-20s I have annual colonoscopies. I accept that I have to get bi-monthly blood labs to be sure my medicine isn’t affecting my liver. I accept that I often have to pretend I am okay because I can’t continuously cancel plans, or miss big-moments. But what I forget sometimes is that this isn’t normal. I forget that other people, besides me, care about me and I need to manage that. UC has become such a part of who I am, that when people ask me if I’m feeling okay, it takes me by surprise to remember that I’m very sick.
Since my rookie year, I’ve learned a few things:
· People react differently to different medications – one person’s side effects may be completely different than yours
· Don’t consider what you read online as fact
· Sometimes you’re going to cry and it’s okay
· People LOVE to complain. Keep counting your blessings rather than joining their pity parties
· Vegetables aren’t always good for you. Eat them sparingly
· Cinnamon is an anti-inflammatory. Add it to your coffee
· Baby wipes are not just for babies
· Tylenol is okay, not ibuprofen
· Invest in a heating pad, it is magical
· Drink more water than you want to
· Going for a short, slow walk can help pain. If you’re too sick for a short walk, go to the ER
The past three years I have been on and off steroids, which is terrible to be on and off of for that long. I consider steroids the devil’s drug. They work immediately, but have terrible side effects. Along with steroids, I started with a Level One medication, an aminosalicylate, which stopped working for me after a year. I moved onto a Level Two medication, an immunosuppressant, which has also now stopped working. I’m moving up and onto the final Level of medications: biologics. This medication is not a pill, it is an infusion, I am out of pill-options.
My goal going into this new medication is to find the freedom that three years ago I thought would come as soon as I was released from the hospital: remission. If I don’t find myself in remission, the last step for me is surgery. I’m not afraid of my UC, nor am I afraid of what it may bring. A friend of mine who had the surgery explained it well, she told me that you lose one year, but get the rest of your life back.
Like everything else around my disease, I’m unsure. I’m unsure about what the future will hold for me, but I do know that it will be nothing less than great. The rest of my life is a blank slate, and I intend to overfill it with love, family, friends, and uber-happy moments. I don’t have much space allotted in my future for sitting on the couch with my heating pad. So, we shall see where this next year takes me, I’m aiming for freedom.