I am a 20 year-old female student-athlete attending Miami University. Playing Division 1 soccer at Miami, has been for three years. (Though this may be my last, thanks to this dang disease). Currently a Junior.
-diarrhea (lots and lots)
-bloody stools (basically every stool)
-urgency (not able to hold/make it to bathroom in time)
-wake up numerous times throughout the night in order to go to bathroom
It was pretty crazy how I was diagnosed with UC, and a story I have to explain numerous times because people (and myself) do not understand how this all of a sudden came about. Ever since I was 5 years old, sports were my passion- specifically soccer. By the time I hit high school, I was a Varsity athlete for both soccer and basketball. I was a normal, healthy high school student with nothing but high hopes for my future. During my junior year of high school, I had verbally committed to Miami University for a scholarship to play soccer. I was extremely excited, because it seemed as though all of my hard work had finally paid off. Then my senior year rolled around and it was a year that would completely change my life.
I had started having symptoms the summer going into my senior year, so this would have been summer of ’09. During soccer tournaments throughout the summer, I found myself running to the bathroom numerous times. Every time I went, the product was always diarrhea. I told my parents but we all did not think much of it. My parents assured me that it was probably “runners diarrhea” and it was due to the fact that I was so active. So I continued throughout my senior soccer season, where the symptoms only increased. As fall rolled around, so did my stomach cramping and pain. After winning a state championship (still the coolest experience of my life), my parents decided to take me to our family doctor and see if anything could be figured out.
At first our family doctor diagnosed me with IBS, which he gave me these blue pills that did not work in the slightest. With zero relief, my parents next move was to take me to see a G.I doc. The G.I doctor thought it could be Celiac’s Disease. I had an endoscopy, which they found that I tested positive for Celiac’s. Though at the time I had no clue what that meant, I transitioned to a gluten-free diet. My family and I were relieved, because it seemed as though we had found a solution and I would heal up good as new. We were wrong. After being on a gluten-free diet, my symptoms still remained and I felt more sick then ever. It was January around this time, I remember because I was in the middle of my basketball season. One day I kept having the chills and then I would spike a fever, my stomach hurt extremely bad. It was almost as if someone was taking a knife and stabbing me in the stomach, and then the pain would spread throughout my entire body. My parents took me to the hospital, where I was given some good-feeling drugs but the doctors still couldn’t figure out what was wrong. After staying the night, I went back home and started up my basketball practices again.
I still was feeling awful and right when February rolled around, my life would never be the same. On a Monday morning before school, I just felt off. I told my mom and she thought that maybe if I ate something, I would feel better. As soon as I took a bite of yogurt, I knew something wasn’t right. I started walking to the bathroom and BAM, it was like I was hit with an unforeseen force..I started projectile vomiting and going from the other end, at the same time. It was crazy how I could not make myself stop, I was so shocked by what was going on. After the spewing was finished, I went straight to bed- where I stayed for a week. It was not a fun experience. I couldn’t eat anything, because I would spew it back up as soon as I was done. If I was not throwing up, I was headed to the bathroom in order to go from the other end. It was disturbing really, I just kept seeing myself becoming skinner and skinner with every trip to the bathroom. My parents and I thought it w as just the flu or a bug, but after a week of this torture, I had had enough. I was off to the hospital again.
During this one week period, I had lost 17 pounds. I was exhausted, tired, and extremely scared. I had no clue what was going on with me. I stayed in the hospital for a week, attached to an IV when I should have been finishing out my senior basketball season. I was in the hospital for a week when they finally diagnosed me with UC (I was 18). I had no clue what was going on, or what UC even was. I had never heard of it before. They started me off on Prednisone (ohhh how I hate that drug), so I was a puffy-mess for my senior prom. I know I needed to gain back the weight, but I felt like I had gained it all back in my face. They prescribed me Asacol and Pentasa, both of which had zero effect. The doctor kept resorting back to the steroids, which I was not a fan of.
The summer before my freshman year of college, my parents thought a natural-route would help the healing process. They had been doing research and wanted to try and heal me without the medications. I was worse then ever, pretty much pooping myself every time I could not reach a bathroom. It was horrible and I was absolutely miserable. I found a new G.I doctor near my school and have been seeing him ever since. Though I was resistant, the new doc put me back on Prednisone (in order to control the flare). He then transitioned me over to 6-MP. I started Mercaptopurine my freshman year, and at first was extremely excited. This drug seemed to be working and I was seeing better results. Of course, my body would not let me stay happy for long.
Spring season of my freshman year I tore my ACL during my first game back. I was rehabbing from surgery and my stomach issues were still there, but not as bad. I went through my sophomore year dealing with the diarrhea and pain as my new “norm.” I just figured this was how my life was going to be. This past summer (summer 2012), my parents once again thought a natural path would help heal me. Though I still believe that I can be cured naturally, this summer was a disappointment. I had gone on a program designed by a chiropractor who studied holistic healing (please don’t think I am crazy) and tried this for 3 months. I eliminated a bunch of food from my diet, and it was very strict. Though this program seemed like the answer, and has helped many people (according to the book), my body once again did not respond. (Throughout this experimenting with the holistic-diet, I was still taking the 6-MP). Which brings us to the present. I am currently taking 75 mg of Mer captopurine and just finished my 2nd treatment of Remicade. I had heard good things about Remicade, but even after my 2nd treatment- I feel zero relief.
To sum it up, I am absolutely miserable. I have cramping and burning almost all of the time. I was not even able to go on our team White-Water rafting trip this year, for fear that I would have no access to a bathroom which would cause numerous accidents. It was a bummer.
Every time I use the bathroom, it is usually blood. I am scared and at a loss. I hate the fact that I am on prescribed medications, and always have. If there was anyway that I could heal this naturally- I would do it in a heartbeat. I am scared of the side-effects that both 6-MP & Remicade (especially combined) present. I feel as though there is no escape from this. I also am finding it extremely hard to keep up with the demanding life of being a student-athlete, especially since I am seeing blood in my stool every time I go. I am thinking about “retiring” from soccer (I don’t want to use the term quitting, I will feel like a failure). I always told myself I would never allow this disease to define who I am, but it is getting extremely hard to play the sport I love and manage every day life with this disease.
I know this was an extremely long post, and I really appreciate it if someone is still reading this. My dad had told me about this website and after debating, I knew I wanted to share my story. With this story, I hope that maybe someone else can find comfort in knowing that they aren’t alone. I also hope that maybe there is someone who can help or even give a small bit of advice. I am losing hope. I have tried staying positive throughout this entire journey, but it is starting to take a toll on me. If you have any advice, please please please feel free to write a reply. It would mean so very much to me. Thank you for reading. I hope that everyone with this disease will be able to find relief in some way. God bless.
Where I’d like to be in 1 year:
Free from this disease and all of the stress/worry it brings to me and my loving family.
Asacol & Pentasa = didn’t work
Prednisone = love the relief, hate the side-effects it has on my body
Mercaptopurine (6-MP) = Effective for the first couple of months, but then did very little for relief *even after bumping up the dosage. Hate reading about the side-effects. Still currently taking this.
Remicade = Still up for debate, haven’t seen any relief yet. Crossing my fingers though. Once again, nervous about the side-effects.
written by Sarah
submitted in the colitis venting area