Welcome to my blog! Ulcerative colitis is an incurable auto-immune disease that affects over 1 million Americans. Everyone has a different story. Some are willing to share and some aren’t. Which is understandable, Crohn’s and Colitis can be difficult diseases to discuss with friends, families and co-workers. Personally, I hope that my story and sharing’s about my day to day will help others who suffer from these painful, unpredictable digestive diseases.
I began feeling symptoms of gastrointestinal discomfort in April of 2012, a month after I returned from a vacation of a lifetime in the Dominican Republic. I will never forget the night the symptoms first began. I was working as a bartender at the time which included late and long hours. That night, I remember feeling a sharp pain in the pit of my stomach, with nausea that was impossible to ignore.
As time went on and my chronic abdominal symptoms became worse, we decided to see a local gastroenterologist. We informed him that I had been out of the country recently. After completing multiple stool samples and lab tests with no findings, I was diagnosed with ulcerative colitis after a routine colonoscopy.
I went through the entire summer of 2012 with symptoms of ulcerative colitis. I was constantly crampy with an impending urge to go to the bathroom. I slept little at night due to my job hours and frequent bathroom trips, and I was trying to sleep during the day. I felt like I had no energy and my quality of life was horrible. I remember feeling so confused and scared. I was very uneducated as to what UC was and how much maintenance it truly required.
In September I was home visiting my family when I had a few days off work. I had found a new Gastroenterologist who was compassionate and very knowledgeable about inflammatory bowel disease. I was getting ready to drive back to Columbus on a Friday when my mom came home and told me that I was being directly admitted to Aultman Hospital. I needed to go to the hospital in order to receive IV treatment for two different kinds of parasites that had went undetected for almost 6 months.
When my doctor arrived at the hospital and told me I would be in there at least 4 days, I was in shock. But there was hope that I would improve if the parasite was eliminated. After my blood work and labs were drawn, I found out that I needed to have a blood transfusion as I was anemic from all of the blood loss. I was severely malnourished and had basically no protein in my body. During that first stay in the hospital, I had a repeat colonoscopy which demonstrated progression of my ulcerative colitis, and a blood transfusion for the first time in my life. I had to take 4 very strong pills that made me extremely sick to kill off the parasite, and my first long term IV PICC line implanted in my main, left arm vein. I was started on Remicade, a powerful medication used to combat inflammatory bowel disease by altering your immune system and 6 MP, a chemotherapeutic agent and immune suppressant. I was also on high dose steroid and TPN which is IV protein and lipid nourishment, all while dealing with the fact that I had been diagnosed with the worst cast of pan colitis that my GI doctor had seen in 25 years.
Throughout the year that followed, I did my best to cope with my severe UC. My family and I tried everything to find relief from the pain and suffering I was experiencing because of my disease. My father, who is a physician, even chased me around my 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 entire lifestyle, diet, sleeping habits, everything. I was experiencing over 15-30 bloody and extremely painful bowel movements all day and all through the night. Every 6 weeks I would go to the hospital for my Remicade infusion and would feel a little better, but not much. I became severely immunodeficient due to the 6-MP, which could have easily resulted in life threatening infection, and this medication was stopped.
I experienced a short lived semi remission state for a few weeks in the winter of 2013 where my bleeding and frequency improved, but the worst was yet to come.
I began my downward spiral in the spring of 2013. I was suddenly experiencing extreme nausea, began vomiting and was now going to the bathroom over 25-40 times daily. The bleeding had returned. The pain was unbearable. I couldn’t eat anything, wasn’t sleeping and the Remicade 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 60-70 times. I remember sitting on the toilet and vomiting in the garbage can at the same time.
During my hospital stay, another colonoscopy was performed and showed that my colitis had not gotten much better. I left that hospital stay after 4 days and returned home.
Upon returning home, I was the sickest I had ever been. Because of constant blood loss, 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 for 8 more days on high dose IV steroid, TPN, double doses of Remicade, pain and nausea medicine through another PICC line, the whole 9 yards. After my release, I was to stay on home IV nutrition every night delivered through my PICC line by my father and have home health care nurses come to my house every week to draw blood from my line. 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 for me and I was suffering immensely.
The final option was switching to Humira, another powerful medication delivered by painful intramuscular injections. This medication did not help and a key test used to measure your inflammatory response, the C Reactive Protein rose to a critical level. A normal C-reactive protein level is a .2-.4. By the end of June my number read 95. I was at extremely high risk of bowel perforation which could kill me.
Upon my urgent visit to meet a surgeon at the Cleveland Clinic, I never wanted to have surgery and was told that I would never have to. I was always terrified of having an ostomy and it seemed, at the time, like the end of the world. Arriving to that appointment, 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 in 3 days. He explained to me that 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 give me relief from my pain.
When I woke up, I felt better than I had in 2 years. I forgot what it was like to feel good, to be able to live a normal life, without anxiety or fear of where a bathroom was or when the pain would come back. I couldn’t eat, sleep, live. Getting used to my ostomy was one of the hardest things I have ever and will probably ever have to do, but it gave me my life back. I came to terms with what was decided, I had no choices left.
I decided that I could sit and feel sorry for myself or I could try to help myself by helping others. I wanted to make the best of the time that I had with my ostomy and my surgeries. I looked at it as an opportunity to learn about myself and others. Today I can confidently say that there is nothing that I am more proud of than my ostomy.
I searched for the nearest local CCFA chapter and immediately began volunteering after my first surgery. Through the CCFA, my writing and the creation of Companion Magazine, I have healed myself and feel so healthy and happy.
Companion Magazine has had hundreds of thousands of views and I have been fortunate enough to help those who suffer with IBD all over the world. Any issue is available to read on our website by clicking here.
I completed my three step surgery process and am now currently living the most normal life I possibly can with my jpouch. I go out with my friends, I go on dates, I work a full time job that I absolutely love with co-workers and a boss who are so supportive, interested and understanding of what I have been through. I have had a few bumps along the road, including cuffitis and iron deficiency anemia, but I know that life with my jpouch is so much better than the way I was living with ulcerative colitis.
Crohn’s and ulcerative colitis are the worst kinds of thieves. They lie when promising medications don’t work. 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.
Ulcerative colitis stole a lot of things that I loved, friends, a job and most importantly, my health. I am no longer a victim or a prisoner of this disease. My misery has been replaced with compassion, an outlet to help others, and countless new friends that inspire me every day.
Crohn’s, colitis and having an ostomy would make it easy for anyone to want to hide in their house and fear the world. The pain is inexplicable to those who do not have inflammatory bowel disease. The anxiety drains you of any hope. Your entire being is centered around a bathroom.
I have found that having a positive state of mind is the most important asset to anyone’s well-being, especially someone living with IBD. My terrible disease and suffering have made me a stronger person, even when I couldn’t get up off of the bathroom floor.
If you are negative, that state of mind will eat you alive. Live every single day like it is a gift, because it is. There is always someone who is suffering worse than you are and there are so many ways in which you can help them.
Visit Companion Magazine for IBD at companionibd.com – we are always accepting and open to positive story contributions.
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