So I didn’t think I was going to do this.
But I am.
I am giving you my story because…why not? However, I will try to make a REALLY long story as short as I can.
From the ages of 10 months to 9 years I spent at least a week or more in the hospital every year but I wasn’t properly diagnosed back then. My dehydration, vomiting, and diarrhea were attributed to “nervous stomach”, my diet, or other random things. At one point I was put on a diet of nothing but white rice which earned me the lovely nickname “rice girl” from family members.
(me and my mom in the hospital when I was 5 years old)
When I was 14 years old I started having really (I mean really) bad stomach pains accompanied by diarrhea. Eventually I started to notice blood in my bowel movements and got scared so I told my mom who took me to the doctor. After some testing I was diagnosed with ulcerative colitis.
I was scared. I cried. And then I ignored it. I was a teenage girl who was far too embarrassed to pay attention to blood in her poop. Unfortunately I never took the time to learn much about the disease I had when I was younger, and luckily it stayed pretty mild in my teens. I got through those years being very active with minimal flare-ups. I took dance lessons, I taught dance lessons, I worked two jobs, I went to school, I hit the gym 4 times a week, and I hardly ever had a flare-up or took medication. This doesn’t mean I didn’t have flare-ups or get scared from time to time (because I did), but it was always pretty mild in comparison to my life now and it was usually quickly resolved.
As I grew up and my disease became more active I took more time to research it and learn as much as possible about it, but it still always sat in the back of my mind. I knew what could happen and I educated myself all about it, but it wasn’t going to happen to ME! It wasn’t until I was in my final semesters in college that I started to get very sick. Crohn’s disease and ulcerative colitis are not pretty diseases (is any disease,really?). They are embarrassing to talk about, and the inflammation and ulceration in your guts causes terrible things to happen and so I kept my disease a secret and started to isolate myself. My typical college days of hanging out in friends dorm rooms, attending school clubs, going out, and just having fun, almost immediately stopped. I was constantly anxious and embarrassed and instead of explaining things to the people closest to me I would make up excuses to not hang out and spend the night in my dorm room alone.
It started out with bad pain and diarrhea every night. Soon I was going to the bathroom about 15 times a day. I shared a dorm room with someone and I was too scared to keep using the bathroom so I would go down to the lobby of my building and use that one. But when I kept coming downstairs I knew the people at the desk started to notice. Soon I became afraid to go to the bathroom anywhere, and eventually I would skip classes because I knew I would have the bathroom to myself. My pain and bathroom trips started to have a new symptom, an old familiar one…blood. I was then basically doing nothing but pooping blood, and my bowel movements increased to about 30 per day on average. The entire toilet bowl would just be red, this was very scary for me.
I saw my GI (without health insurance) who put me back on asocol and prednisone but neither of them helped. A couple months later he upped my doses and also prescribed to me mesalamine enemas that I was supposed to try and hold in over 8 hours a night. Yeah right!
The pain I was in was unbearable. It felt like my insides were shredding up and falling out of me and at times it would knock me to the floor. This pain got even worse when I had to go to the bathroom. When you are in a flare-up like this you also have urgency. Meaning when you feel like you have to go, you basically have 2 seconds to find a bathroom or you will crap yourself. Oh yes. I have had accidents in my car while driving, in college classes, in a hotel room while on a romantic date, basically all over the place. Because of that I started to isolate myself even more. I didn’t go anywhere because I never knew when this would happen.
I lost my job. I failed the whole semester. I lost friends. I lost any quality to my life. Towards the end I had moved back in with my parents and did nothing but lay in bed. I was losing weight rapidly and could hardly eat. I could hardly walk. The disease started to affect my joints and sometimes my knees and ankles would be so swollen i couldn’t get on my feet to stand. Soon everyone was scared for me. At night I would spike fevers around 102-103 degrees and I would convulse after each trip to the bathroom. I had night sweats that were terrible, waking up in soaked sheets from sweating out the fevers. My body was screaming THERE’S SOMETHING WRONG!
The day I went to the hospital was because my ankle joints hurt so bad I couldn’t walk. I had to be helped down the stairs and cried the entire way from the pain I was in. My mom took me to the ER where they told me my blood levels were too low, my white blood cell count was too high, and I was very very sick. The doctor looked at my mom and said “you have a very sick kid here”.
This landed me 6 months in the hospital. I had 3 blood transfusions. IV steroids. An infection (with a fever of 104) that landed me in the ICU. TPN for months. Multiple NG tubes. Surgery to remove my large intestine and rectum and create a j pouch and ileostomy. Surgery to cut away adhesions that were strangling my small bowel and to reverse my ostomy. Scopes, MRI’s, CT scans, procedure after procedure. I was in so much pain the entire time even though I was on very strong pain medication.
I got out at 82 pounds and it still took a long time to recover. I slept for days and I hadn’t used most of my muscles for such a long time I couldn’t even walk up steps. My hair had fallen out in clumps during my hospital stay and some of my teeth started to chip and break apart from all the medications, malnutrition, and vomiting. I was very weak and for a long time I would throw up everything I ate.
This is why I appreciate life. Since then I have had multiple hospital stays and a few things have changed. My diagnosis has changed from UC to Crohn’s disease. I can’t tell you how many times i’ve been sick, had a picc line, an NG tube, a transfusion, etc. I currently do remicade infusions and methotrexate injections and cross my fingers that I can keep my j pouch.
This may all sound very depressing and sad, but the truth is I have learned so much about myself and life because of all i’ve been through. I have been able to help and inspire others and have gained friends I can call my family along the way.