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Crohn’s disease dragged my body to a point where it barely functioned

I did not expect this to be my life; a 22-year-old female nursing student, chronically ill and fitted with a permanent ileostomy.

Today, I am healthier than I have been in a long time. But even so, this summer break alone has seen me in hospital twice to have abscesses removed, an outpatient flexible sigmoidoscopy​, which is an exam to evaluate the lower part of the large intestine, and an MRI. The days are dwindling until the first semester starts and all I can do is hope that my health holds out.

Before the diagnosis of Crohn’s at age 19, I had so many things I wanted to achieve. I wanted to travel everywhere, have an important career, run marathons, and conquer the world. I felt as though high school was the last thing holding me back from the big wide world. The pay checks I got from a part-time pharmacy job were saved for my first big adventure. I got about 12 months of freedom before my healthy body started to falter.

There is currently no cure for any form of Inflammatory Bowel Disease (IBD). Treatment includes medications that control symptoms and surgical interventions when the medications aren’t effective. To maintain my health there were two surgeries to remove my colon plus a further surgery to correct a prolapsing stoma, daily medications, a fortnightly injection, regular GP visits, specialist appointments, procedures and blood tests.

Although IBD is thought of as being confined to ulceration of the bowel, it manifests in many other ways, such as fatigue, brain fog, nausea, tender swollen lumps on the skin, red eyes, sore joints, abscesses, pain and side effects from medications and surgeries. This is what no one sees while I am at work, while studying, out in public and in my own home.

At its worst, Crohn’s dragged my body to a point where it hardly functioned. I couldn’t see the future I had planned for myself anymore, only a dark haze that took too much energy to think about.

I had a peripherally inserted central catheter (PICC) line that fed me through a vein. It hurt even to be in bed, the layer of fat that is supposed to cushion the body was used up long ago and my skeleton jutted through opaque skin. I could hardly move or the vomiting would start. Mum would help me shower. The usual curly mane of hair on my head would come out in clumps when I ran my hands through it. My view was either hospital walls or bedroom walls. There was no movement, no eating, no life. My world had become stagnant. The healthy body that I had taken for granted was gone.

I didn’t want to be a burden. I didn’t want to be the ‘sick girl’ that everyone pitied. But very quickly I became that. I became a hollow shell of who I had been, physically and figuratively. I didn’t have my soft body anymore; it wasn’t my face looking back at me in the mirror. All I could see were knobbly knees, gaunt cheeks, sunken eyes, ribs, vertebrae, hip bones. An alien in place of me.

After the second surgery, the burden of Crohn’s on my body began to lift. When I said that I felt “a little better today”, it was actually true for the first time in a long time. That was not the end of complications, but it was the start of a different life. The things I had taken for granted for the first 19 years of my life were now a privilege.

My expectations of life have been simplified. It is not that I can’t achieve the things that younger me wanted; it is that I realised happiness is simpler than that. Happiness is being close to my family, having a career that is fulfilling, having a body that allows me to move, eat, enjoy life and have independence. Not everyone gets the opportunity to live life the way they would like and the freedom to plan for their future.

I am happy when I make a good coffee in the morning, when my cat chooses to sleep on my bed at night and when I can pick up my niece to give her a cuddle. I get joy through food, through making a posy of flowers for Mum, through knowing I am lucky enough to have a home to live in. Perspective is a privilege.

Did you eat today? Did you get to go to your job today? Do you have people you love close to you? Were you able to shower yourself? Are you pain-free?

Then today is a good day.

Read original story by Danielle Barber here.

Posted on: January 23 2020

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