Marija

Marathon #36 – 26.2 for Marija

Marija’s Story:

If I see a problem, I don’t sit around complaining about it or telling people how they could do it better—I roll up my sleeves and get to work. It is why I ran for president of the Student Government Association in college, why I fundraise and volunteer for my alma mater, and why I got involved with Team Challenge and the Young Professionals Committee and fundraise for the Crohn’s and Colitis Foundation.

Even though I did not get diagnosed with Crohn’s disease until I was 29 years old, I believe that I had lived with the disease all throughout my 20’s and even possibly college. I speak about my experiences with it because I want others living with Crohn’s or ulcerative colitis to feel less alone. This disease comes with a lot of stigma, which is my greatest motivation for speaking about it so openly.

EARLY SIGNS

In college I ended up in the ER during my first year with bad anal bleeding because the nurses did not know what to do with me. It was after my first semester of college that I was diagnosed with Hashimoto’s after being very sick. As an autoimmune disease, it also gave me severe fatigue, memory problems and brain fog, while making me depressed. It is the reason I did not graduate summa cum laude; but staying in school and fighting taught me a far more valuable lesson.

This fatigue would continue all throughout my 20’s. I saw a doctor for it after I graduated from college and then again in my mid-20’s. I told her about the anal bleeding that I had regularly, the brain fog and memory problems, and that something felt off. I had started to have hip and joint pain as well. She said I was vitamin B12 and D deficient and told me to take those vitamins along with a multivitamin. All signs of Crohn’s disease I now realize in retrospect.

PROGRESSION

During this time, I went home to be with my family because my father had been sick. I took any extra time I had to study for the LSAT when my parents did not need me. I remember sleeping through most days and feeling terrible but attributing it to the fact that I was dealing with a lot. I never thought to bring up the frequency of my bowel moments other than to say that they were bloody because I thought that others must also go to the bathroom ten or more times every day.

I ended up taking the LSAT twice and remember being terrified about what I would do if I had to use the bathroom suddenly during the exam. Both times I took the exam I spent the entirety of my break in the restroom. When something comes on gradually it almost becomes second nature.

In law school I had similar problems. However, I also started to get chronic fevers and aches and pains all over my body (and was diagnosed with another endocrine/autoimmune issue which explained only some of the pain). I did not know what was causing what, but I knew that the severity of the fatigue contributed to making everything worse. I had zero energy for exercise and my mental health was not good. I thought it might be because I was working so hard. I probably went to the ER 4/5 times during my first year of law school because of the pain and fevers. I was mentally and physically exhausted. No one seemed to know what was going on or how to help me. There were nights when I went to sleep terrified that I would not wake up the next day. I saw infectious disease doctors, got tested for Lyme, and was tested for Lupus many, many times. Then, I finally got sent to a GI doctor by my rheumatologist as I have arthritis, which is one of the extraintestinal manifestations of Crohn’s disease. When my Crohn’s disease is under control so is my arthritis. I learned through this experience that around 25% of people with Crohn’s have arthritis.

DIAGNOSIS

The GI doctor asked me about my bowel movements. I tend to not make a big deal out of things, so when she learned that I would wake up in the middle of the night on a regular basis to use the bathroom she insisted that we do a colonoscopy. That procedure ended up changing my life. Right away they knew it was IBD and that it was probably Crohn’s disease. However, I did not get the full confirmation until my assigned GI doctor could have a panel of experts look at everything. Once she did that, it was confirmed that I had Crohn’s in both my small and large intestines and that it was in the moderate to severe category.

During my mid 20’s I had stopped exercising and had gained a lot of weight. As soon as I knew what it was, I had learned about Team Challenge. Right away I knew that I was going to be running a half marathon for the Crohn’s and Colitis Foundation. I was determined to reclaim my body and to give back—it was my silver lining after living in the unknown for a decade. I can’t explain the power that comes with knowledge. I finally felt like I had some control…even though simultaneously the disease made me feel like everything was spinning out of control. The loneliness and the lack of control I felt was exacerbated in great part because I don’t have any family in Massachusetts. I got through it with the help of Team Challenge, phone conversations with my parents, a few friends I trusted, the help of a social worker, one law school professor, and my doctor.

I had to try a few medications, including steroids, some I injected myself, while others were administered through infusions before I found the one that worked. At first, I got an infusion every eight weeks, which turned out not to be strong enough, so I now get an infusion and blood work done every four weeks. In addition to arthritis, I also have eczema on my face and some other side effects which I have learned to manage either on my own or with the help of doctors. People with IBD who go on steroids are at a much higher risk for osteoporosis, so I get bone density x-rays done and make sure that I do strength training at the gym to ensure my bones stay healthy.

REMISSION

I got to remission about a year or so after being diagnosed. I learned the hard way that being in remission does not mean that I can eat as much salad or fruits and veggies; my favorite foods. It does not mean that I don’t bleed sometimes or have occasional hiccups. But my arthritis is better. I honestly don’t remember the last time I felt this good.

In law school we talk about negotiating or drafting in the shadow of litigation, and I feel like I live in the shadow of Crohn’s disease. Because of this, I don’t take life for granted. There are things this disease has taught me for which I am grateful, and I believe it will continue to make me a better person and citizen. I can’t change the fact that I have this disease, so I will be the best version of myself with it. I will continue to follow my dreams, fundraise for the Crohn’s and Colitis Foundation because there are people who really need a cure, and fight like hell. And I dare anyone to try and stop me. The best part, I constantly hear from people living with this disease because I am so open about it…people who don’t openly talk about their struggles, and that has meant the world to me.