By Jennifer Martin, Columnist
I have never known life without chronic illness and pain. I was diagnosed with juvenile rheumatoid arthritis (JRA) when I was 18 months old, so the life of a healthy person is foreign to me. I don’t remember much about my early childhood with JRA other than daily medications, physical therapy and endless doctor’s appointments.
When I was 6, my arthritis went into remission. I took full advantage of that and began taking gymnastics, played street hockey with the neighborhood kids, and later joined the swim team. Life was good.
Then one cold, rainy day before swim practice, I noticed that my knee was aching. I shrugged it off and went to practice. Later that night, the pain had increased and my knee was swollen. I just knew my arthritis was back. I was 15 years old at the time.
A visit to the rheumatologist confirmed my fear. Just like that I was back on multiple medications, forced to give up gymnastics and swimming, and was living again with daily pain.
I was trying to find a balance between normal teenage life and dealing with chronic pain that none of my friends or family could relate to. None of my friends had to give up activities they loved. None of my friends had to have their knee drained when medication wasn’t keeping the swelling down. None of my friends had to deal with taking pills for breakfast, lunch and dinner.
So why did I have to do all these things?
I remember one day when I was a senior in high school, I was in so much pain that I just sat home on the couch in tears all day instead of going to school. It wasn’t too long after that that I had my first knee surgery due to my arthritis.
Fast forward several years to one day when I was 25 years old. It is a day I will never forget. I was at my mom’s house when I began feeling a little bloated. I used the bathroom and when I looked down I saw bright red blood in the toilet. My heart began pounding, my breath quickened and my hands began to shake.
“What the heck is going on with me?” I remember thinking. I took a few moments to calm myself down and then I convinced myself it must be nothing. I went back downstairs and joined in the conversation without telling my family what happened.
Several days later however, my symptoms had worsened and there was still blood in the toilet. I knew I had no choice but to tell my family. That began months of doctor’s appointments and tests that no human should have to be subjected to. When I was finally diagnosed with ulcerative colitis, I was relieved to have a name for what was going on and at the same time frustrated that this meant another chronic diagnosis, more medication and more uncertainty.
The next two years were a roller coaster. I had flares, felt horrible, and then went into remission.
February 2009 began the biggest challenge of my life. It was six months after I got married. I began having a flare and quickly knew that this flare was different than any I had experienced before. The pain was more intense, the medications weren’t working, and I was quickly losing weight from my already thin 108 pound frame. By April, I was admitted to the hospital 30 pounds lighter and experiencing constant, excruciating pain so intense that I literally could not stand up straight.
Every time I was forced by my family to eat and any time I used the bathroom it felt like a thousand knifes slicing through my intestines. I remember many nights in the bathroom covering my mouth to suppress screams because I didn’t want to worry my husband.
The day after my hospital admission, I had a colonoscopy. While coming out of anesthesia I heard my gastroenterologist say to one of her colleagues, “This is the worst case of ulcerative colitis I have ever seen.”
The next day, I was transferred to UC Irvine Medical Center where I was to have three surgeries. Surgery one consisted of removing my colon and constructing an ileostomy. Surgery two involved constructing an internal j-pouch which essentially acts as a pseudo colon. Surgery three involved removing my ileostomy and connecting my j-pouch. After my third surgery I experienced complications, due to the amount of weight I had lost and scar tissue which required further hospitalization.
While my third surgery was supposed to be my last, that was not the case. Since then I have had three more surgeries due to my j-pouch twisting. The last surgery was as recent as 11 months ago. I’m hoping that was my last.
In the midst of all this craziness I managed to complete my doctoral degree in psychology and I now specialize in counseling individuals with chronic pain and chronic illness. It has become my passion.
Because of my own experiences, I understand the emotional issues that arise from living with chronic pain and chronic illness. I understand the depression, the anxiety, and the feeling of being so sick and in so much pain that maybe it would be easier to end it.
But I also understand how important it is to work through those feelings, to find meaning in your situation, and to find a way to live life despite your diagnosis. That is what I try to instill in my patients.
I have also beaten the odds and had a son. I was told that due to my surgeries I would only have a 20% chance of conceiving on my own. I look at my son every day and know that he is my miracle. I hope and pray that he will never know the pain of chronic illness and chronic pain, but if he does, I will be there for him and I will understand.
Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness.
Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.