A few years before my ulcerative colitis diagnosis, I was a social work graduate student at West Virginia University. I began experiencing blood and mucus in my stool as well as bouts of constipation and diarrhea. I went to my doctor on more than one occasion and was continually misdiagnosed. In July 2010, while vacationing at the beach with some friends, I started experiencing diarrhea up to 20 times a day, bloody bowel movements, abdominal pain, urgency, fatigue, chills, night sweats, nausea and vomiting. Once I got home to Morgantown, I was in the ED at WVU Hospital multiple times in the course of a week. I was finally admitted for further testing, including a colonoscopy. It was then that I learned I had ulcerative colitis. I was so scared. I was only 27 years old and was faced with having to live with a lifelong chronic illness.
The next two years after my diagnosis, I was lucky enough to be in remission for the majority of the time. I was on a medication regimen that was working well for me, although very expensive. It was a struggle each month to pay for the medications that I knew I had to have in order to live my life. Eventually those medications stopped working, and the next 3 years I experienced multiple flare ups. I tried numerous medications to try and help control my UC such as Aminosalicylates, Corticosteroids, Antibiotics, and Biological Therapies all of which failed. I had multiple doctor visits, tests and procedures conducted, bloodwork, and tried different diets. I ended up being hospitalized at least 7 times in a period of 2-3 years. During one hospitalization, I contracted C-Diff, which I was unable to get rid of for over a year even after multiple rounds of antibiotics and a fecal transplant. During one hospitalization in Morgantown, at Mon General, I became so severely ill I had to be transported by ambulance to UPMC in Pittsburgh. I was so dehydrated I had a central line placed in my neck to help administer fluids and medications. Within a couple years my symptoms went from mild to severe and I was experiencing diarrhea 30+ times a day, abdominal pain, urgency, weight loss, loss of appetite, nausea, vomiting, vitamin deficiencies, anemia, fevers, fatigue, rashes, mouth ulcers, fissures, hair loss, unhealthy nails, anxiety, and inflammation in my joints. I had to be given a blood transfusion due to my blood count being so low. It was recommended by my local gastroenterologist and family doctor that I get a consult with a colorectal surgeon.
In October 2014, I made the 4 ? hour trip from Morgantown, WV to The Cleveland Clinic in Ohio where they conducted several tests and procedures and informed me my best option would be having a total proctocolectomy and ileoanal j-pouch to treat my severe UC. In January 2015, my family and I traveled to The Cleveland Clinic where I had my large intestine removed, internal ileoanal j-pouch created out of my small intestine, and was given a temporary ileostomy. Unfortunately, I experienced some complications and developed two DVT blood clots where I had to be placed on blood thinners. In June 2015, I started experiencing severe abdominal pain and vomiting and it was determined that I had developed a bowel obstruction from scar tissue wrapping around my small intestine in which I had to be rushed into emergency surgery. Before the doctors could operate I had to be given several units of plasma due to being on blood thinners. After the emergency surgery, my incision became infected and I had to be placed on an antibiotic. Finally, in October 2015 I had my third and final surgery at The Cleveland Clinic to have my ileostomy reversed and my j-pouch connected. Unfortunately, my hospital stay was longer than anticipated due to me developing an ileus where I had to have a NG tube placed from my nose to my stomach and I developed pneumonia. Since my surgeries, my quality of life has improved tremendously and even though I'm still learning to adjust to life with my j-pouch it has given me my life back and I am no longer a prisoner of my disease.
Unfortunately, in January 2016 I experienced pain, redness, and swelling in my ankles, knees, and wrists. I was diagnosed with arthritis associated with my autoimmune disorder. Although my immune system could no longer attack my colon, it has moved on to my joints. I had to start seeing a rheumatologist regularly. Initially, I was started on Cimzia, but I experienced multiple, severe side effects and it had to be discontinued. My rheumatologist then prescribed Humira injections every other week to treat it. I have been on Humira in the past for my UC, but it was unsuccessful in treating my UC. It is, however, helping with the arthritis.
I'm thankful for medical technology and that The Cleveland Clinic gave me a second chance at life and the hope to live without pain and suffering. This process has taught me every day is a blessing and to live life to the fullest. I'm beyond grateful for the love and support I received and continue to receive from my family, my husband, friends, and coworkers. I could not have made it on this journey without them.