May 18 2017

World IBD Day

I started having IBD symptoms when I was 11. I spent my formidable years in and out of pain. Suffering symptoms that made no sense, I thought I was insane. I thought I was making myself sick. Doctors could never find anything wrong with me and tests never showed anything conclusive.
I got diagnosed in 2007, at the age of 17. I would like to say life got easier, that learning that something was wrong with me–which wasn’t mental–helped. It didn’t.
With a diagnosis came pills–lots of them. With the pills came depression and more doctors. With the doctors came financial obligations that packed a host of other problems. So it goes.
If you have ever researched Crohn’s or Ulcerative Colitis, you’ll read about the typical symptoms: diarrhea, fatigue, abdominal pain, cramping, fevers, and nausea. However, in honor of World IBD day tomorrow, (May 19th) I wanted to offer more than just that cursory sentence, so I have included a few pictures from my life. This in no way explains this disease, but maybe you’ll get a better look at how it can effect someone.
80 pounds 
This picture represents the unhealthiest point in my life. I was 80 pounds and barely holding it together. I lived off of crackers and Gatorade. I could never keep food down, had lower abdominal pain constantly, and was hospitalized with an abscess. I ended up staying seven days and required a feeding tube.

Not too long after that hospitalization I required surgery. I ended up having a temporary Ostomy and partial colon resection. Months later I went through a second and consequent third surgery for the re-anastomosis (attachment) surgery.
Scars
Barium
Flairs happen, and when they do you get scanned. Scoped. Poked. Prodded. Tested. Needled. Pumped full of chemicals and injected with dye. Barium– hope you never have to taste this. If you do, I am sorry. Truly. Call me on that day and I will sit with you. Honest.
IV TreatmetnNow for me, this next picture represents so much more than just treatment. I am currently on Remicade, a low-dose chemotherapy drug. I have been on it since June of 2014.
Pregnancy can do one of two things: bring about remission or pull you from it. When I got pregnant with Joseph, I was pulled from remission. I was faced with a choice: Joe or treatment. You don’t need me to explain to you what those days were like; I think you can figure it out.
I get these infusions every eight weeks and will continue to do so for the rest of my life, or until I build up an immunity. There isn’t much in the way of what comes next if the drug stops working, so I remain hopeful that they continue to work. Yes, that does mean I will be on low-dose chemo for life. That means needles, blood tests, TB tests, cancer screenings, fecal screenings, and constant health surveys and appointments. For life.

The things not pictured: sleepless nights, ER visits, hospital gowns, bowel obstructions at 30+ weeks pregnant, pharmacy wait times, falling asleep on the bathroom floor, waking up in cold water after finding 30 glorious minutes of sleep in the bathtub, aching joints, blood, the Fitbit step count after a day of using the bathroom, the tears, the inflamed insides, the stress, the anxiety, the anger, the isolation, the feeling of turning your best friend into a care giver.
Also not pictured, my strength. My determination to beat this disease. My hope that a future with a cure exists.

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Posted May 18, 2017 by in category "Crohn's Disease

1 COMMENTS :

  1. By Nikki (Post author) on

    Your Fitbit after a bathroom day 🤣🤣🤣
    I’ve had that moment!? You don’t know whether to laugh or cry.
    Love you!!!

    Reply

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