A 14 year Journey with Crohn’s Disease
By: Samantha Rylee Smith
As I sit on the street outside of my apartment, I’m not quite sure how to fit 14 years of experience with Crohn’s in 1,000 words, but I’ll try. Without further a due here is a condensed version of my Crohn’s, how it’s affected my life, and how I live with it.
I was first diagnosed with Crohn’s disease in 2004 at the age of eight. Simply defined, Crohn’s disease is an autoimmune disorder that can affect any part of your digestive tract. Symptoms include, but are not limited to; bleeding ulcers, weight loss, abdominal pain, IBD, abscess, and fistulas. This means treatment is required for oral medications, injections, biologics, and/or surgery. In order to reach remission, you will have to go through some trial and error to find what works for you. Physically, this description is accurate, but it fails to mention the psychological aspect of living with this disease. This disease will affect how you see the world and how you live in it.
My medical history is long. I remember having medical folders that were as thick as dictionaries. Some of these medications/procedures include; Pentasa, Imuran, Prednisone, vitamin supplements, iron and B12 injections, Humara, Remicade, and currently, Cimzia. I’ve also had setons put in, and three major surgeries where I had my appendix, ileum, and roughly three feet of intestine removed, as well as having a colostomy put in during my last surgery in March 2017. My first two interactions with Crohn’s were similar, in that, it was affecting my small intestine and my abdominal pain was the same.
The third time was very different. It was in my intestine and my anal canal and brought with it abscesses and fistulas I hadn’t experienced before. Also, unlike before, I had no pain to indie ate to me that there was even anything going on. So know that your Crohn’s can take many forms and no two cases are the same. Recovery after my last surgery had me on the break of suicide, it was so painful. At times we can get depressed and feel like no matter what we do the pain will never end but know that you will get through it and you can lead a happy and fulfilled life. Never let Crohn’s or colitis defeat you. In times of doubt, it is impervious to have a solid support system, even if that system is a single person. In my case, my parents have been my saving grace. These people are the blessings in my life that are there for me no matter how ugly I feel about myself.
Speaking of feeling ugly, my surgeries have left me with a bag and scars that are hard not to notice. They do make me feel insecure at times, but they’re battle scars I try to wear with pride. This doesn’t make going to the beach very enjoyable though. All I can say is if someone has stared at your ostomy bag longer than you like, wiggle it at them and have a laugh. A good sense of humor will make it easier to move on from those situations. It can be stressful to be viewed as the kid with a bag but I find that meditation helps to melt those feelings away. Who cares what society thinks, you were born to stand out.
Growing up a Crohnie, my path to maturity has been different than my peers. Most young people in middle school, high school, and even college are worried about who’s dating who, what cool new thing Kaley was wearing, or who was going to the party on Saturday. I was worried about making it to the bathroom before the bus left or hoping I wouldn’t get penalized for not turning my work in on time because I was sick when it was due. Sadly having Crohn’s or colitis means you are going to miss class.
My best recommendation is to get a 504 plan before school starts so you don’t get stressed or feel like a burden to your teachers. Post Ursula, (my ostomy bag) sitting in a college class was like torture. I was more focused on her not making noise than the actual lesson. It can be embarrassing so if it’s a social encounter you’d rather miss, online classes, are a great alternative. Another quick tip for college goers, asking the dorm advisor for a handy capped room is a great idea. One you’ll have the largest single and two you be able to have solidarity when you aren’t feeling well.
As a now young adult, Crohn’s affects me in other ways, mainly in how successful my future will be and how I navigate the possibility of relationships. When it comes to success, what every Crohn’s patient needs to understand is, different people have different definitions as to what success means. For some, a successful day includes getting a work out in before heading off to their ten-hour job, get little Susie to soccer practice on time, and still managing to have the family sit down to dinner together.
For us, a successful day isn’t measured by how much we get done. For us, a successful day is one without pain. Reaching remission is a great success, so don’t let how your peers are doing make you feel less accomplished. Having patients in life is a virtue and makes you a better person.
Another subject that takes patients is love. Finding a relationship can be hard for a chronically ill person. Life can get lonely for us in many ways. Finding someone who can understand us is hard when we haven’t figured ourselves out. My advice is to learn to live happily with yourself first, you have your whole life to fall in love. Personally, it hasn’t happened to me but living with Crohn’s has made me independent in that way, which is more than I can say for some people.
Looking to the future, I know it won’t be without its complications. Luckily, having the knowledge I’ve gained over the past 14 years will help me get through the rough patches. Who knows where we will be in five years. All I know for certain is I will never let Crohn’s turn me into a victim. I will fight for the life I want and I hope you will too.