I have Ulcerative Colitis/IBD.
While my official diagnosis came in January, I had been developing symptoms of what I will call my first flare since August of 2016. I had been a pack-a-day smoker for approximately 15 years, and after being smoke-free for 2-2.5 years, my UC decided to make its grand entrance. While I have never previously experienced anything like I am now, from my early twenties I had always had bouts of what I thought was IBS. I simply took a probiotic and watched what I ate and it would alleviate whatever minor symptoms I had. Little did I know at the time that there was more to it.
My disease has progressed from mild proctitis to severe extensive UC (left-sided). I am currently tapering from 40mg of prednisone after a 4 day hospital stay that truly humbled me. I still have the bruises from from the pin cushion I became while admitted.
I went to the Hospital of the University of Penn for my little mini-vacay because they are honestly one of, if not the, best hospitals in this area. They ran every test under the sun while I was there and at the very least we now know exactly what was happening to me for about 2 months.
Canasa had been working pretty well from the beginning of February through to the middle of April (Easter to be exact). At this time I went through an 11 day tour of Dante’s Inferno, but I really didn’t quite yet understand what was happening to me. After ending up at the doctor’s office crying, my GI (who was super responsive to my calls for help) placed me on Lialda (x3) in addition to the Canasa which almost immediately subdued my torture. For about 3 weeks.
Almost to the day, a month later in May, I saw the same pattern emerge and I decided not to wait quite as long. It was a total of 6 days where I actually tried to prevent myself from needing to go to the hospital, but ultimately after not being able to eat for 4 of those days and the immense amount of pain and feeling of physical weakness, I decided I had to do something. A little inner voice told me to call the IBD specialist’s office that I had made an appointment with in April for July and see if they had any cancellations.
Thanks to whatever stars aligned, I was able to get into the specialist’s office early. I was weak and terrified and had lost 4lbs in 4 days. If you know me, I keep organized and detailed notes regarding, well, anything. But, in this situation, it was regarding my symptoms and diet.
Within about 30 minutes of my new patient/emergency appointment, I was admitted to the hospital. Thank god for supportive loved ones, because I don’t know how I could have managed otherwise. They did so many blood and stool tests, scans, and consultations that at the very least I now feel a little more prepared for this disease.
I will say that the hospital stay was pleasant and that the team of doctors and doctors-to-be are really great. And, the nurses/other staff are awesome, too (I wouldn’t forget them in this). I felt safe, at least. But, the most disheartening thing from all of this was the conversation that I had with the in-house dietitian who I had asked to speak with.
After explaining how I had been at my prime health prior to diagnosis – quit smoking, took a break from alcohol, riding a hybrid bike, attending the gym 4+ times a week, following a fabulous dietitian-guided diet, and feeling amazing – I asked the HUP dietitian to tell me what I could do or stop doing to help my body stop trying to kill me from the inside. She said: “No matter what you do or don’t do, if the disease wants to progress or worsen, that’s exactly what it will do.”
So, I’m at war with my own body and might lose. In the end, this is making me appreciate good days so much more than I ever have. It’s making treat people even more kindly because we never know what someone is battling in their personal lives. And, just because someone looks like they have it all together, doesn’t mean they aren’t 100% faking it. There will be days that I will fake it so hard that it hurts more just to not be defeated by this disease. I refuse to let it completely destroy the good in my life. Even though it might try its darnedest, so will I.