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My Worst Crohn’s Flare: When Time Stood Still

Living. All this living going on out here!

Those were my exact thoughts when I walked out of the hospital on December 22nd after being in the hospital for 6 months. I was admitted on July 6th and left on December 22nd, though there were a couple times in there that I was discharged but I ended up back in within a day or two from a complication. In so many ways those six months felt like an eternity and yet at the same time it felt as if time stood still. 

Living requires quality of life: I was not living, I was just alive 

June

I had high hopes of going to see fireworks a few days before the 4th of July but wasn’t able to make it because of my health. I knew a huge crowd and no immediate access to a bathroom was no place for me at the time. I was anxious because I knew cancelling plans would ruin another night for us and I had no energy to fight. 

At this point I was no longer living. I use the word living differently than meaning to be alive. Living to me is something more than breathing air in and out. It is more than just existing. Living requires quality of life. I was not living back then, I was just alive.

No firework show, no anything. I actually couldn’t walk very well because inflammation was so out of control that my ankles were incredibly swollen and walking was extremely painful. Arthritis back then was something new to me. It was one of those things I had read about when researching my disease; I knew it could happen but it always felt like I was reading a fictional story and not real life things that could happen to me. That wasn’t me. I wasn’t that bad. But I was. 

I was that bad.  

I couldn’t walk, I cried just to stand up, and it took me awhile to get going every day. Not that I was going anywhere… the only place I was going those days were to and from the bathroom.  

In

and out

In

and out

My days were spent in my room upstairs laying in bed and I spent my nights in the bathroom worried every time I stood up and saw how much blood I was losing. I’d collapse back into my bed and shiver from the high fevers. The fevers, the pain, the blood loss, the trips to the bathroom, and the medications that were failing me. That was my life. My existence. 

My friend Steve came to visit me one day that summer and we took a walk down my street but I could barely walk.

Me and my friend Steve on a boat in our bathing suits

He helped me around as we talked about how sick I had become. Steve used to be my workout buddy in the past. We were always in the gym and he used to come up to the dance studio to watch me dance. Now I could hardly walk. I was embarrassed but I also knew that out of everyone, if he saw me like this, then he could validate for sure that this wasn’t good. I don’t know why I needed validation, obviously this wasn’t good, but I did. Lack of health insurance kept me delusional I guess. I needed a big validation sandwich in order to agree to go to the hospital without insurance. 

Then came a day I tried to go downstairs to the kitchen but it was so painful I was crying. I was holding onto the railing of the stairs slowly lowering each 

foot to make my way down. This was when I waved my white flag and surrendered to the hospital. 

My world stopped. Time stood still. Yet out there people were living

July 6th

I didn’t go to the hospital thinking that this was the day that would lead to the biggest changes in my life, and I certainly was not thinking I’d be there for 6 months! Truthfully I thought that I’d be back home in just a few hours.

I didn’t even know what to say when I showed up. 

“Uhhh well… I can’t walk.”

and then I disclosed that I have IBD.

Once I saw a doctor I was given something for pain and it worked. My ankles felt better. Cool! I could walk. I thought I was going home but I was wrong. They wanted to run some tests on my legs to make sure I didn’t have a blood clot and during that time the results of my bloodwork came back. My white blood cell count was crazy high and my hemoglobin too low. I was going to be admitted and I needed blood transfusions. 

Everything happened so fast after that. My steroids were switched from oral to IV and the dose increased. I was put on TPN because of how underweight and malnourished I had become. I was given a PCA pump and had some blood transfusions. A colonoscopy 

Laying in my hospital bed in a hospital gown and with an NG tube in after surgeryOn a stretcher in the recovery area of the hospital. I have an NG tube in and a PICC line
Sorry about the quality. Taken on an ancient flip phone

the following day had to be stopped because my colon was in such bag shape that the risk of perforation was high. 

Surgery. I needed surgery. Before I knew it I was talking to a surgeon, meeting an ostomy nurse, getting more blood transfusions so that I’d go into surgery with enough blood, and then I was waking up without a large intestine and with an ostomy. You know how the rest of it went… six months. My world became the hospital. It became the 4 walls of my hospital room and it revolved around being a patient. 

My world stopped. 

Time stood still. 

December 22nd

As I was pushed in a wheelchair out to the car after being discharged I took note of my surroudings. Out here people were living. My friends had all gone back to school to start the fall semester. Their worlds kept going but mine stood right here for 24 weeks. Summer ended, fall came and went, and then it was winter. It was snowing. Last time I was out here it was warm and sunny. Christmas was approaching and people had their gifts and they had their trees up and… life. Life was going on out here. 

Sara

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