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 4 years old)
My hospital was small and very shy of state-of-the-art and back then Crohn’s disease and ulcerative colitis wasn’t as understood as it is today. Those early years I learned to be brave, how to not cry when getting an IV, what it’s like to miss out on holidays and special events because of the hospital. I also became sadly familiar with how lonely it gets there.
When I was 14 years old I started having really (I mean really) bad stomach pains accompanied by diarrhea. This wasn’t new for me, but definitely worse. Pain that knocked me to my knees and felt like the talons of a bird were scraping down my insides. Eventually I started to notice blood in my bowel movements. I was embarrassed, tried to shrug it off as “nothing”, but as it kept happening I got scared so I told my mom who took me to my pediatritian. After some testing (that at the age of 14 I swore couldn’t be more embarrassing) I was diagnosed with ulcerative colitis.
I was scared. I cried. I thought I was going to die. And then I ignored it. I was a teenage girl who was far too embarrassed to pay attention to blood in the toilet. 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. I did get my fair share of disappointment. I missed a trip to California, my favorite place at the time, because of a flare-up. Again I was learning what it was like to have things you love stolen from you due to disease.
As I grew up and my disease became more active in my late teens and early 20’s 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! No sir-ee, I was going to be one of those lucky ones whose disease stayed mild and didn’t bother them. It wasn’t until I was in my final semesters in college that I started to get very 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 cause 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 was no way for a girl in her early 20’s to live and during one of the times in my life where I should have been having some of the best times of my life. In fact I was having the best times of my life, until it all changed.
Remember when you were young and you’d be running real hard and fall down and scrape your knees up so bad that they were all open and bleeding and inflamed? That is pretty much what the inside of my large intestine was experiencing. Because of that bleeding and inflammation the colon can’t properly do it’s job of absorbing electrolytes and fluids and turning waste into a solid form, thus resulting in diarrhea and an urgent need to evacuate the bowels. 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, and sometimes I couldn’t even hold it for the elevator ride down. 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. I was in a relationship at this time and instead of honesty, I started to make up excuses or cause fights just so that I could have my room 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.
Fast forward: This went on for many many months and progressively got worse. Resulting in a ton of weight loss, too much blood loss, high fevers every night, the awful pain, and so on. Imagine trying to live the life of a college girl hovering under 100 pounds and so anemic due to the blood loss. The fatigue of the weight loss, the blood loss, the sleepless nights, and just fighting off a disease while taking horrible medication was awful. I could no longer manage going to classes, working my job, and everything else.
During the last month that I tried to stay in school I had all about quit going to most of my classes. I was having accidents from the urgency and at my lowest point had an accident in a classroom where I had to excuse myself from the class, run to the bathroom across the hall and clean myself up while girls in there laughed out loud at me, dispose of my underwear in the stall, and come back to class where my friends were as if nothing happened. I was so humiliated, scared that this was my life, and felt like I was living with this burden alone because I didn’t want to talk about it with anyone. There was no more hanging out in my friends dorm room with my other friends, no more laughter, no more joy.
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. I was admitted immediately and my life would never be the same…
This landed me 6 months in the hospital. Yep. I just said 6 months. I had 3 blood transfusions right away to try and get my blood levels back to normal. High doses of IV steroids. An infection (with a fever of 106) that landed me in the ICU. TPN (intravenous feeding) 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. It seemed like every complication imaginable happened. 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 also found out that I have a motility disorder. 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.
This is just a little bit of a big story. There is so much more to tell!