By Brooke Bogdan, Special to Everyday Health
Crohn’s and ulcerative colitis are the worst kinds of thieves. They break into your body and destroy your most beloved belonging, your health. They steal your confidence, and your ability to live a normal life. They lie when promising medications don’t work.Ulcerative colitis stole a lot of things that I loved: friends, a job and most importantly, my health. But I am no longer a victim or a prisoner of this disease. Now, my misery has been replaced with compassion, an outlet to help others, and countless new friends who inspire me every day.
But here’s how my journey began:
I started feeling symptoms of gastrointestinal discomfort in April 2012, a month after I returned home to Ohio, from the vacation of a lifetime in the Dominican Republic. I will never forget that night. I was working as a bartender, which meant late long hours. That night, I felt a sharp pain in the pit of my stomach, with nausea that was impossible to ignore.
As time went on and my abdominal symptoms became worse, I went to see a local gastroenterologist, and I told him I had been out of the country recently. After multiple stool samples and lab tests with no findings, I had a colonoscopy and was diagnosed with ulcerative colitis.
Through the entire summer, I was constantly crampy with an urge to go to the bathroom. I slept little at night due to my job hours and frequent bathroom trips. I had no energy, and my quality of life was horrible. I felt so confused and scared. I was very uneducated about ulcerative colitis and how much maintenance it truly required.
A New Diagnosis: Parasites
In September, I found a new gastroenterologist in Canton, Ohio, who was compassionate and very knowledgeable about inflammatory bowel disease. He admitted me to the hospital right away to get IV treatment for a parasite that had gone undetected for almost six months. When my doctor arrived and told me I would be there at least four days, I was in shock. But there was hope that I would improve if the parasite was eliminated. I needed a blood transfusion because I was anemic from blood loss, and I was also severely malnourished.
A repeat colonoscopy showed progression of my ulcerative colitis, and I had to have a blood transfusion for the first time in my life. I also had to take very strong pills that made me extremely sick to kill off the parasite. I was started on a powerful drug for autoimmune conditions like U.C., plus chemotherapy, a high-dose steroid and IV nourishment. All the while, I was dealing with the fact that I had been diagnosed with the worst cast of pancolitis that my GI doctor had seen in 25 years.
My Downward Spiral Begins
Throughout the next year, I did my best to cope with my severe UC. My family and I tried everything to relieve my pain and suffering. My father, who is a physician, even chased me around the house with an electronic cigarette and nicotine patches, insisting that it would help ease my symptoms. Though I didn’t take up smoking, I completely changed my lifestyle, diet, sleeping habits – everything.
I had numerous bloody bowel movements all day and all through the night. Every six weeks I went to the hospital for another infusion of the auto-immune disease drug and would feel a little better, but not much. I became severely immunodeficient due to the 6-MP, and could have easily developed a life-threatening infection, so this medication was stopped.
I experienced a short-lived semi-remission for a few weeks, but the worst was yet to come.
I began my downward spiral last spring. I was suddenly experiencing extreme nausea and began vomiting and going to the bathroom 25 to 40 times daily. The bleeding had returned. I couldn’t eat and wasn’t sleeping, and my medication stopped working. By May, I was completely bedridden and back in the hospital. I was vomiting 10 times a day while going to the bathroom close to 60 times. I remember sitting on the toilet and vomiting in the garbage can at the same time. A colonoscopy showed that my colitis had not gotten much better. I left that hospital stay after four days and returned home.
I was the sickest I had ever been. I had two more blood transfusions. I went days without eating, hiding food in the garbage and not getting out of bed. I ended up back in the hospital on high-dose steroids, TPN, pain and nausea medicine, and the autoimmune drug – the whole nine yards.
After my release, I was on IV nutrition delivered by my father every night; home health nurses came to my house every week to draw blood. All night I would run back and forth to the toilet, dragging a 5-pound backpack filled with liquid nutrition. Nothing was making a difference. I was suffering immensely.
An Ostomy and a New Lease on Life
The final option was switching to a different ulcerative colitis medication delivered by painful intramuscular injections. It didn’t help, and my C-reactive protein level rose to a critical level. A normal C-reactive protein level is a 0.2 to 0.4. Mine was 95. I was at extremely high risk of bowel perforation, which could kill me.
I made an appointment to see a surgeon at the Cleveland Clinic. I was always terrified of having an ostomy, which seemed, at the time, like the end of the world. But I was lucky enough to see one of the best colorectal surgeons in the country. I was stunned when he told me I was extremely ill and he wanted to remove my colon right away. He said waiting any longer was dangerous for my life.
I spent my last weekend with my colon in shock, crying, sleeping and going to the bathroom countless times. When Monday came, I bravely went to my surgery with no tears, just hope that this operation would relieve my pain.
When I woke up, I felt better than I had in two years. I had forgotten what it was like to feel good, to be able to live a normal life, without anxiety or fear of not being able to find a bathroom or that the pain would come back. I couldn’t eat, sleep, live. Getting used to my ostomy was hard, but it gave me my life back. I’ve come to terms with what was decided, I had no choices left.
As I recovered, I wanted to help others who have suffered as I have. I searched for the nearestCrohn’s and Colitis Foundation (CCFA) chapter and immediately began volunteering. I also started my blog, Fierce and Flared, and created an online magazine called Companion (soon to be in print as well) to help bring together those who live with IBD. I have been fortunate enough to help those who suffer with IBD all over the world.
I completed my three-step surgery process and am now living the most normal life I possibly can with my J-pouch. I go out with my friends, I go on dates, I work a consuming full-time job that I absolutely love.I have had a few bumps along the road, including pouchitis and iron deficiency, but I know that life with my J-pouch is so much better than the way I was living with ulcerative colitis.