In late March of 2002, everything was perfect. I was days away from my 18th birthday, I was training for my 4th season of varsity track and field, and I was on Spring Break in Florida with my best friend.
Everything was perfect…until we decided to go for a training run on the beach, and I suddenly had to use the bathroom with an urgency I hadn’t experienced before. I found the nearest bathroom and went, and as we continued to run, the feeling hit again. I had to go to the bathroom twice during our 30 minute run, and urgently again when we got back. At the time, I figured it was probably the heat and humidity, and the fact that we went from the Chicago weather to Florida weather in March. Just a bug. But the bowel movements and symptoms kept up, and although I had no idea at the time, nothing would ever be the same.
I was back at home, had just graduated high school, and was doing my best to hang out with my friends as much as possible in that last summer before we all departed for college. A few months had gone by since Florida, and my mom noticed I was spending a lot of time in the bathroom and having abdominal pain.
She took me to get checked out, and I was quickly diagnosed with UC after a few preliminary blood tests and a colonoscopy. There’s never really a good time to get diagnosed, but I think this is one of the least preferred, one foot out of the door of childhood and into my first taste of college and everything that comes with. A lot of changes were happening already, and I didn’t want to think about a life-changing illness. I was put on Asacol as my first therapy, and tried to think about it as little as possible. After all, when you get sick, you just have to take medicine for a little while until you get better, right?
I went off to college at Marquette University at the end of the summer. At the time, symptoms weren’t horrible. I could sort of manage them – at least enough that I could try to live a normal college life, which included joining the crew team (a fun change from my cross country and track running days) and, of course, making new friends, going to parties, going on road trips, and all that fun stuff.
I was focusing on the whole college experience during this time – academics, sports, and socially – but my disease kept reminding me that it wasn’t going away. It progressively got worse and worse during college, to the point where I had to quit the crew team and I couldn’t run at all, eventually to the point where I was hardly eating, barely had any energy, and spent many weekend nights alone in my apartment, watching movies and sticking near the bathroom, while my peers went out to parties, met boys, and reminded me to “give them a call when I was feeling better”. They didn’t understand – and I didn’t fully either, yet – that there wasn’t necessarily a “better” with UC – I was going to be sick forever.
College was an extremely lonely time for me. People often think of diseases as just a biological, cellular thing happening in your body, but with any significant illness, it takes over your life. It affects you on every level. It affects you in ways you don’t even know to expect. It took me a while to realize this, and obviously it is a big learning process, nothing that someone can tell you at the moment of diagnosis and expect you to internalize. I was so envious of my peers, and also angry. They got to go out on weekends (and let’s face it, weeknights too). They didn’t have to explain to professors about colonoscopies. They could eat without pain. They could control their bowel movements. How could they go about their normal, carefree lives? How could they not understand that not everyone has that freedom through health? How come I couldn’t find a single person who would give up their Friday night activities to sit and watch movies with me when I couldn’t do much else?
During this time, I had also switched doctors from my mom’s doctor in Illinois to a local doctor in a Milwaukee suburb, so that I could have someone closer. Like I said, I was constantly learning about my disease, and there was still a lot to learn. There are also a lot of medications approved now that weren’t available to me at the time. That doctor kept me on the same three treatments, basically – Asacol, Prednisone, and enemas. Yep, just what every college kid with a roommate wants to do, an enema. I could barely handle the walk from Walgreens back to my apartment with a shopping bag full of butt medicine – talk about a walk of shame!
But I kept getting sicker and sicker – I had periods of tolerability mixed with periods of flaring. I remember, during this time, celebrating Thanksgiving of my junior year, sitting at the table with our extended family and literally holding back tears because I could not eat. The thought of eating, the sight of food, instantly brought a mix of pain and anger. The exhaustion didn’t help. The lack of understanding from extended family didn’t help. I also remember going to the doctor’s office one day because I just could not handle much more, showing up without an appointment, and I was so exhausted that I could not even stay awake in the waiting room. That’s what this disease really is. It takes over your whole life, and although it’s not terminal, it’s still life changing in every way.
There was a point when I was well into my college years where it occurred to me that I had forgotten what “normal” felt like. I forgot what it was like to eat and not have pain, what a normal bowel movement looks like, and I figured that this was just the way my life was going to be from now on. But one day, I just got sick of having to deal. I was having some really bad days mixed in with the usual, and I pretty much went to work, came home and crashed.
I was also hearing about new meds which were being approved for IBD. I had a doctor’s appointment and brought up these new options, mentioned that I was tired of just handling things, that maybe there was hope that I could be completely symptom-free. I remember his reaction as if it was yesterday “You don’t need to try anything different. The meds you’re on are what you respond to. Any GI you go to is going to tell you the same thing”. And that was it. I was done. Not only was he not open to trying anything different, his words indicated that he either didn’t actually know what I responded to, or didn’t care. I found a new doctor, and just in time.
I remember my first appointment at my current hospital (oh heyyyy, Froedtert!) It was one of those days when I was just out. Out of strength, out of trying. I had made a vow to myself that I was never going to use Colitis as an excuse for anything – not to get out of work, not to avoid plans, nothing. Even though I had bad days, I wanted to prove to myself and my job that I wasn’t going to let it stop me from getting the job done…but this was the day. This was the day that it had gotten so bad that I was about to go home from work early because of IBD – and the hospital could squeeze me in for the last appointment of the day. The last appointment before the doctor hopped a plane to fly out for the 4th of July weekend. I was so grateful.
It sounds stupid to someone who hasn’t been there, but that appointment and doctor changed my life, and the whole course of my disease. We reviewed my disease and medication history. I expressed my frustrations with my symptoms and my treatment. I asked about some of the new treatment options that I had heard were out there. I remember him saying two things that day…the first was, “We’re going to keep trying different treatments until we find whatever works for you” and the second was, “You’re only 24 and you deserve to live your life like any 24 year old wants to“… And I cried. I cried because it felt like someone cared, enough to go through whatever effort was needed to find the right treatment for me, and also because it was the first time ever that anyone, let alone a medical professional, had looked at me as a whole person, not just a colon disease…a person with ambitions and emotions and relationships…all of which were affected by IBD. I cried because I had been carrying around the weight and stress of IBD alone, and after half a decade, I could put that into someone else’s care.
I went home and took the best nap of my life. Then my boyfriend and I went out to a sushi dinner to celebrate. Yep, we celebrated finding a better doctor. That’s the life of a chronically ill patient.
Sure enough, this doctor had me try some different medications. They worked slightly better, but I still wasn’t totally under control. Eventually, it came down to an infusion drug called Remicade. I had heard good things about Remicade from Crohn’s patients, but it was newly approved for UC. If this didn’t work, he told me, it would be time for surgery. I teared up again. He told me not to cry, that it was OK and I didn’t have to be scared of Remicade. I wasn’t scared of Remicade, I was scared of it not working, that this would be the end of options for me, that this was my last chance. Please work, I prayed. Please, please, please.
I got friends at Camp Oasis!
I remember starting my first infusion, and asking the nurses how long it would take before I knew if it worked or not. Before I had to seriously think about going under the knife. They told me it could be up to a few weeks…but 2 or 3 days later, I woke up and just felt different. I felt an energy that I forgot I could even have. I had a focus in my head that I didn’t even realize I had lost. I slept better, I didn’t wake up with a bathroom sprint. I could stop worrying about the choice between the pain of eating and the pain of going hungry. I realized I wasn’t constantly seeking out the nearest bathroom, just in case. And after a bit of adjusting the dosage, Remicade worked its magic, and for the last 6 or so years, I have been as normal and healthy as can be. I mean, I can eat salad! I can run! I can do anything! I can be me again.
Throughout this time, since probably the last few years of very active symptoms, I have also learned to talk about my disease. Crohn’s and Colitis are, by their nature, extremely embarrassing, which creates a whole new level of challenge for patients on top of the pain and physical disease. It’s a barrier to patients becoming accepting of their own disease, and a barrier to talking about it, spreading awareness, and finding support.
In the beginning, I told people that I had Colitis, and the basics of what they needed to know (I might need to sprint to the bathroom! I can’t eat ice cream!) but slowly started telling some people more intimate details – my fears, my emotional pains, my loneliness, how much I missed running, how sometimes I forgot who I was. All the things I felt like I had to overcome to just get a taste of a normal college and young adult life. I expected them to respond with pity, to feel sorry for me, or to think it was disgusting.
IBD Can’t Stop Me!
But many people surprised me. They told me they thought I was strong. They told me I was an inspiration. They said things like “I don’t know if I could handle as much as you do.” and I started to see IBD in a new light. I began to focus on those points when I shared my story, and my confidence when talking about IBD grew.
My personal acceptance and coming to terms with my disease also improved. And better confidence allowed me to tell my story in a more and more positive (yet still realistic) way. That’s a message I constantly want to get to other people – a lot of being open is how you present yourself. If you tell people with shame, they will feel bad for you. If you tell them in an embarrassed way, they will think there is something to be embarrassed about. But if you tell them with strength, “Look how much I have handled. Look how strong I am” they will be inspired by you.
Now, I often think of things in terms of “before Colitis” and “after Colitis”. Sometimes, I think the people that knew me before I was diagnosed think of me differently than those I’ve met after – I am wholly a better person in the after, happier with myself, more confident in my priorities and passions in life. I am me again, but a better me. A me that has grown in ways I didn’t expect, because of a disease that is harder than I expected.
This is my new normal, and it’s not the picture perfect running-along-the-beach scene from before. Now, it’s running-along-the-beach-with-purpose-and-perspective. It’s a better appreciation, an intimate relationship with my own identity, knowing who I am, how strong I can be. The “before” people, I think, sometimes think of me as a girl that used to run a lot, that has turned around and done some notable things despite getting sick. The “after” people, I think and hope, can see that I’ve done some things because of getting sick, and that’s exactly how I want people to perceive me and my personal experience with UC. It’s also a perspective and motivation I wish I could bottle up and share with the whole world.
Back to my story, soon after starting Remicade, I enrolled in grad school and earned my MBA, found a job I absolutely love, and have gotten back to my true love of running – participating in things like the CCFA Team Challenge Half Marathon program and even a half Ironman triathlon! Through the Great Bowel Movement, I work to help everyday patients spread awareness of Crohn’s and Colitis in a conversational, relateable way.
I wear my “Ask Me About My Colitis” with pride, and here’s the thing. I want to tell you what Colitis is and the the seriousness of the disease and the way it affects nearly every aspect of a patient’s life, about the pain and exhaustion and embarrassment and how my painful experience is still nothing compared to so many of my friends and peers, but I also want to tell you that I see a lot of the goodness and success that I experience now is because of my journey with Colitis. I believe I am blessed with the skills to do well in my career and life, but because of UC, I have the drive and motivation to go after what I want, and the wisdom and perspective to appreciate it all.
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