Wouldn’t Change A Thing

I Have UC

How can I explain the intense pain? How can I put into words the heroic actions of everyday people that have been brought to my attention due to this disease? How can I express the emotional and spiritual healing being sick with Ulcerative Colitis has brought me? I cannot hope to accurately describe just how much this disease has changed me, but my story is one of hope and finding joy in the little things.

My Story

Lately I have been having more bad days than good. I have taken solace in quietly reading most of the day, snuggled up in my bed, the cold sheets easing the hot pain in my feet due to arthritis. My days of quiet rest are a stark change from what they were a year ago. Instead of allowing my body to rest and try to recover from the war this disease is waging on me, I was busily attending the high school of my dreams, ignoring the stabbing pain in my gut that hadn’t gone away in two years. Not only was my academic life bustling, but I was volunteering teaching Sunday School at my parish and helping with my local animal shelter. All the while, I was hoping that the many different medicines being tried on me would work and that they just needed time.
Soon however, it became clear this wasn’t going away. My symptoms worsened and resisted every medicine attempted. It became clear that the only option left was surgery to remove my colon. As I wait for the date of my surgery to approach, I realize the blessings this disease has brought me. So many people have stepped forward, showing their compassion and kindness, to assist me in my recovery.
The most dramatic and unconditional love and support has come from my family and friends. My mother never fails to gently hold my hand when I am scared or in pain. My sister stands up for me against people who insist on smoking near me, although I go into a Prednisone withdrawal induced asthma attack every time I get a whiff of tobacco. My father dutifully shuttles my mom and I to and from many a hospital trip. My grandparents call frequently to check in on us and provide much needed emotional and financial support as necessary. Both of my aunts have been indispensable; supporting my mother during this difficult road and providing encouraging words to me when I am feeling low.
This disease has also brought to my attention the great love my friends have for me. My two best friends are always ready to listen to my ranting about the insurance companies that sometimes refuse to pay for my treatments. They have stuck beside me when no one else has, visiting me in the hospital or bringing me balloons and teddy bears unannounced. These two incredible people have showed me the ability of a person to step outside of themselves and comfort another.
Perhaps most surprising is the love shown to me by complete strangers. This love shown by a volunteer taxi driver who picked my family and I up from a train station at 5 AM. He was not only cheerful and helpful, but he asked about how I was feeling and wished us luck for the doctor’s appointment I was traveling to. I was given a beautiful Irish coin by this incredible man which I continue to cherish.
Another run in with a stranger left me feeling encouraged and inspired. My mother and I were taking the bus to one of my Remicade infusions and I was looking rather pale and worn down. An elderly woman noticed I was headed to the hospital and asked if I was sick. When I replied in the affirmative, she said “Oh sweetie God Bless you, I hope you feel better soon.” This simple act of kindness really gave me the strength to make it through the day.
I have also noticed the good this disease has evoked from me. Ulcerative Colitis is certainly an embarrassing disease that forces you to accept the fact that sometimes, you just have to use the bathroom. As a normally shy and passive individual, I have been forced to assert myself and insist that, even if it is “employees only,” I need to use the restroom. I know that this new found strength to defend myself will help in my future and stand up for those in the future who may not be able to stand up for themselves.
This disease has also made me realize at a young age what is truly important in life. Having to drop out of my dream high school to be home schooled was an incredibly painful and difficult decision. However, it has brought me closer to my family and given me academic and social opportunities that would not have been available if I had stayed in conventional school. I have also had to forgo “normal” teen activities such as partying and staying out all night simply because I cannot afford to do so with such a drastic health concern. To many teenagers, this would be devastating, but to me it is unimportant because I realize the joy that comes from the little things. Now, spending time with my family, buying a new book, or holding my cat bring me a lasting happiness that I am relatively sure partying could never compete with. Learning these things have already made me much happier even though I am still sick.
Although my illness has brought me intense pain, humiliation, and many tears, I believe that it is making me a better, more compassionate person. The pain I feel may help me later on in life when I can honestly relate to those who are suffering. The difficult choices the disease has forced me to make have shaped my life for the better. I have also seen first-hand the incredible love that people close to me, and even complete strangers, are so apt to share. So although the journey has been rough and painful, I certainly wouldn’t change a thing.

The Colitis Medications I’ve Tried:

I have tried it all, forgive me if I miss some but these are the medicines I have been on:

Asacol Trial (had to withdraw due to increase of symptoms)
Remicade (allergic reaction)

4 thoughts on “Wouldn’t Change A Thing”

  1. Hi Joy,

    I feel your pain but you definitely have the right attitude. You will get thru this. I’ve been diagnosed with UC since Oct 2009 and I’m now in my 4th flare up since being diagnosed. This time, it doesn’t seem like my body is responding to the prednisone anymore. I’ve decided to slowly come off of it and see if a natural alternative will help. I just finished reading the book from David Dahlman “Why doesn’t my doctors know this?” – and have gotten the supplements that he suggested. So I’m hoping that it will help me, we’ll see. So far the diarrhea hasn’t stopped but I’m still hopeful, I haven’t had to get up thru the night as much, maybe once. That’s a big improvement from 5 times.

    Hang in there girl…!!


  2. Joy, I wish much good luck in your fight against this illness and your attitude is definitely admirable. You will need to hold on to that perception and attitude with both hands and never let it go because it’s the biggest weapon in your arsenal at the moment. With that being said, I would strongly, strongly suggest that you and your parents sit down with your doctors and insist that you find feasible alternatives to the Prednisone as quickly as you possibly can.

    Many blessings to you and much strength in the journey that lies ahead of you.

  3. Joy, your story and mine are strikingly similar, up to a point (I had to have surgery and fortunately you haven’t had to yet – I hope you can avoid this). I wish I had had your attitude and positivity when I was at my worst. Instead, I was extremely angry – and remained that way until a few months ago. I acted positive around my friends, strangers, nurses and doctors (until I felt they weren’t listening to me and then I threw absolute fits!) – but by myself I was devastated. I hope you hang on to that attitude. It will help you immensely if you have to go through the trauma of surgery and then recovery.
    Much love and hugs,

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