Being diagnosed with Ulcerative Colitis at 16 years old was a hard pill to swallow. Being someone who hated taking pills being before being told that I was not going to have prescriptions. I would have to take for the rest of my life was hard. Before being diagnosed I had been experiencing severe diarrhea problems for about 1.5-2 years. It took a while for me to finally be diagnosed because I was a stubborn teenage who never liked to do as I was told, even if it was for my best interest. My mom told me once I was serious about getting my problem figure out she would help. It was around my 16th birthday when I got serious about wanting answers. My first few moves were to keep a food diary, find foods that I thought were triggering the diarrhea. After not being able to find the trigger food I went to my primary care doctor. She referred me to a gastroenterologist and orders some blood work and stool. I had a consultations first with the doctor on the 24th and she had me set up for the next day for a colonoscopy. A little off topic but on topic, the other day I was going through a stack of old notebooks and came across a journal entry that I wrote the day I was diagnosed with UC. Here it is: June 25, 2009.
Dear diary, Well today is the day, I woke up this morning and my stomach felt like it was in one big knot. The only thing I dreamt about last night was food. I am so hungry and it is only 9:30am. My procedure is not for another 3 hours! An elderly woman came out to the waiting area to get me. I can’t tell if I am nervous, scared, hungry or irritable. They lady asks me to pee into this little jar with a yellow lid. The problem is I went to the bathroom before heading to the hospital, am I going to be able to give them enough of a sample to run whatever test they are going to do? Well I was lucky, somehow just sitting on the toilet and putting that jar right under me I was able to fill the thing up. Maybe it was just mental pressure that I had to do this that made me go. My procedure was scheduled to start at 12 but something happened with the patient before me, and I was postponed to 3pm. The procedure in total was only about 45 minutes. In the recovery room is where my doctor told me that I would have to stay until Sunday. I guess after getting that news I just passed out again because when I woke back up I was in a big room alone still hooked up to an IV, a big window overlooking downtown Seattle, with a tv and a mini fridge. Once the sleepy drugs started to wear off is when my doctor and mom came in the room to give me the news. Not only were they going to give me a list of foods that were in my best interest to take out of my diet but then I had something called Ulcerative Colitis. My doctor informed me that while they were in my colon examining it my insides were so inflamed that they brushed up against a few colon walls and by doing so it started to bleed. They were going to admit me to the hospital for sure for about the next few days. I ended up staying in there for about a week. It was the hardest week. It was the first time that I had ever been alone in the hospital. I think the hardest part was at night, when everyone went home and it was just me. I am sure I am not the only one that gets those sad depressing feelings at night when all the visitors go home and it’s just you in a hospital room with all the machines. Ulcerative Colitis is a disease that I would have for the rest of my life. Ulcerative Colitis is an inflammatory bowel disease, basically my stomach produces a ton of stomach acid which in turn my body mistakes for food and attacks itself. I would now have medications I was to take for life. I was now at a higher rise for coming down with Colon Cancer. I am glad I found that journal entry because there are parts of that initial diagnoses that I forgot about. Feelings and thoughts that I experienced that I can now relive and better express so that others don’t feel alone or different. As I grew to live and understand that this disease was in me to stay I began to learn and study its abusive ways towards me. I learned the warning signs of when it was going to attack. I began to study what the different movements felt like when I needed to find a bathroom vs when I needed to run to a bathroom. I learned that my colon was going to be the abusive person in my life that I would need to learn was going to run my life.
I recently had my colon removed due to precancerous cells. I was told after this last diagnoses that have IBD, you are at a 40 times greater risk of cancer. While this was the hardest decision, and the recovery from removal has been hard, I am happy. I am happy with gaining my quality of life back. I currently have an ileostomy bag but soon I will have a Jpouch connected to my small intestine and will no longer have UC, I will no longer have to stress about having flare ups!!