My Story in Extremes

Five years ago today, on February 21, 2012, I was diagnosed with IBD.

Thinking back on my five years living with IBD, I realize that there have been many ups and downs, with struggling and succeeding, falling backwards and moving forward. I was 16 years old and in perfect health, up until about two months before my diagnosis, when I started experiencing severe symptoms. It was all so sudden and impactful. I went from being perfectly healthy to being extremely sick; from having no symptoms to having every symptom on the IBD list. On the five year anniversary of my diagnosis, I thought what better way to look back and reflect than to highlight some of the extremes in my story:

Bleeding, bleeding, all the time; not a drop to draw

One of my first symptoms was heavy bleeding. My hemoglobin level had dropped to a mere six (normal range is 12-15). I can remember running to the bathroom at least 30 times a day, and I was losing a lot of blood each time. On the other extreme, when it came to drawing blood and starting IVs, there was no blood to be found.

Icy hot 

Every time I broke out with a fever I would sweat so much, causing me to strip off all my layers in an attempt to relieve the heat. Next I would take Tylenol to help break the fever, moving me to the opposite extreme of shivering with chills.

Couch to 5K

While I was losing all that blood, vomiting any food I was able to get past my mouth sores, and sweating with high fevers, I had no energy to even sit up. Yet when those cramps would hit, I found myself able to jump up and run to the bathroom so quickly. Yet another extreme! I was tapping into energy from the hidden wellsprings.

Feather Weight

One of my struggles with IBD has been maintaining a healthy weight. I lost a heaping amount weight being sick; dropping to my lowest weight of 82 lbs. Prednisone was a quick fix, giving me an excessive appetite where there previously was none, and helping me to gain my lost weight back. But it was extreme; I gained those extra pounds and a nice round moon face.

Yes, my IBD has had me fighting a battle from one extreme to the next. And five years ago, as I was laying in my hospital bed freshly diagnosed, I couldn’t see any light on the horizon. Yet, here I am, five years later having experienced:

10 medications

9 Emergency Room visits

4 hospitalizations

4 sonograms

4 MRIs

4 colonoscopies

3 blood transfusions

3 EKGs

2 CT scans

2 X-rays

2 ambulance transports

1 echocardiogram

1 spinal tap

1 holter monitor (to monitor my tachycardia)

70+ injections

100s of doctors’ visits

100s of blood tests

100s of IVs

and…

1,000s of pills…

And I can say that the very same illness that has weakened my body so much, has also taken me to the opposite extreme and has made me an extremely strong person in all areas of my life. It has given me many coping skills which have helped me tremendously through other big challenges. And I’m now happy to be healthy and energetic and able to live my life to its fullest, with a newfound appreciation for the basics I used to take for granted.

Though IBD affects each individual differently, its impact is significant on those who live with it. And until a cure is found, I will always live with the fear that I might have to experience more extremely challenging things with respect to my health. As I remember how quickly my health was deteriorating five years ago, and I was weakening close to death, my fear of that happening again has given me the clarity to appreciate life. For it is only when you lose something that you learn to appreciate.

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