I was diagnosed at 16. The age that a young girl starts coming into her own, becoming a woman. One day I noticed some blood in my stool but with no other symptoms, I overlooked it. It was only a week later and a toilet bowl full of blood that prompted me to call my mother in the bathroom with fear and worry of what this could mean.
Time seems to all sort of mesh into one unpleasant clump of history for me after this. That moment of panic turned into one doctors appointment, then another, then my first colonoscopy, a promise of it not being Crohn’s disease (which my aunt suffers from), a diagnosis of Crohn’s disease, a doctor with no bedside manner, a new pediatric gastroenterologist, more and more tests, 23 pills a day, steroids that made me gain 30 pounds in a month, enemas at night, more colonoscopies, two 3 week hospital stays with bowel infections, and finally a real diagnosis of Ulcerative Colitis by the time I was 18.
Finally after this, I fell into remission with the help of a drug called Remicade. I would go into the hospital’s pediatric cancer infusion center once every 6 weeks to get an infusion which would then reduce my immune system down to nothing so that my body would no longer fight my colon. See, Ulcerative Colitis is what they call an autoimmune disease. Imagine that you’ve received a lung transplant and your immune system rejects it because it’s not technically yours. Well, somehow my immune system got its wires crossed and treats my large intestine like a foreigner which causes the inflammation and disease.
I stayed in remission with Remicade for about 5 years when I eventually built up an immunity to it. We switched to Humira (an injection I could do at home every other week) which carried me through another 4 years, one healthy pregnancy and one really, really rough pregnancy. After my second son was born I faced the worst flare of my life. It began just before my pregnancy and steadily got worse throughout. We were very concerned with the development of the baby, I was on high doses of steroids throughout, checking my blood sugar constantly and losing weight steadily. Luckily, by the grace of God Uriah was born perfectly healthy at 38 weeks.
After that, life got difficult with a new baby, a two year old and a colon that was in really rough shape. We switched to another infusion called entyvio and that seemed to do the trick for another year and a half. Fast forward to the winter of 2017 when I caught a nasty stomach bug that pulled me right out of my cushy remission life into the depths of yet another flare. Now we’ve moved on to another injection called Simponi that I inject at home every 4 weeks, prednisone which leaves me with a nice bout of “moon face” and a flare that just won’t let up.
We aren’t sure what comes next, as I’ve exhausted many of my non surgical options. There is an option of removing my large colon all together, but the idea of it really freaks me out for lack of a better term. I have a follow up with my amazing gastroenterologist next Friday and hopefully we can come up with some sort of plan. For now, I am just trying to focus on summer fun with my boys.