Crohn's disease...a rollercoaster ride!

I'm Abby and I've been the recipient of a gift. Some might not call my illness a gift, but there have been so many positives that have come out of having Crohn's disease. Of course, there are the days when it's overwhelming because your body fails you, but the hardest part of late has been exorbitant medical debt that comes with a chronic illness even after insurance kicks in. After asking my local health system to work with me on my monthly payments and being denied, I'm turning to this community. I never thought I'd have to do this, but grateful that a community like this exists. Please read below for my story (if you have time...it's a long one.)

I was initially diagnosed with ulcerative colitis at 14 months (which would later be determined to be Crohn's disease at the age of 19). My parents saw symptoms earlier than my diagnosis, but were told by several doctors that it was only diarrhea and it would soon pass. But after much persistence and sometimes begging, my parents were able to get someone to give me a diagnosis. At the age of 3 1/2, I had my large intestine removed with a J-pouch reconstruction. My life was never normal after the colectomy and J-pouch surgery because of pouchitis. I seemed to always be in the hospital because of severe pain and dehydration between the ages of 4 and 10. I was prescribed different medications to try to alleviate such symptoms, but all trials failed. I was put on a high dose of Prednisone when I was in third grade. I transformed from a petite, energetic, second grader to a chipmunk-faced, large, sluggish third grader. I was teased due to my weight and the fact that I was always in the bathroom.

My pouchitis had not settled down and my quality of life was zero around the age of 10. I was not growing normally due to the high dose of Prednisone. My parents, unbeknownst to me, had begun to seek out a second opinion (which in the 80s/90s, was one of the only routes because the internet wasn't the place to go for support or information yet). I had one doctor in Madison, Wisconsin who told my parents that in order to have a "normal" life, I must follow his recommendation. I was to be put on daily growth hormone injections so I could go through puberty correctly while still remaining on the highest dose of Prednisone. I would need to commute to the clinic often for testing, which is over a 2 hour journey away from my home. There was a new study being done regarding the effects of Prednisone on ulcerative colitis/Crohn's disease patients and I would aid in the research. The second doctor in Rochester, Minnesota told my parents that I "had no life". My quality of life was so low that they were fearful of waiting too long to have ostomy surgery. My pouchitis had never subsided and was ongoing for over six years. In order to have a "normal" life, I had to have ileostomy surgery. My parents had a very difficult decision to make. I was 11 years old and finishing my year as a fifth-grader. Middle school was just around the corner. My parents decided to give me a life. I had my ileostomy surgery in February 1994.

After the surgery, my life was amazing! I didn't have to run to the bathroom every 10 minutes because of uncontrollable diarrhea. When I was walking through a department store, I did not have to stop and cross my legs in fear of having an accident. I was able to go to sleep-overs because I didn't have to wear pull-ups at night anymore. Adjusting to my new ileostomy was certainly a challenge, but as each day passed without the familiar pain, bleeding, diarrhea, and dehydration, I became more confident with my new life. In middle and high school, I joined softball, choir, and show choir. I made friends and went on dates. I attended college to get my elementary education degree. Crohn's disease was still in the corner of my life, rearing its ugly head in different ways, but it wasn't consuming my life. I wouldn't let it.

At the age of 19, I was re-diagnosed with Crohn's disease. Honestly, I tried to argue with the doctor regarding that diagnosis. Having a diagnosis of ulcerative colitis meant that it was cured when I had my large intestine removed at age 3 1/2. But now that I had Crohn's disease, there were so many more complications that may start occurring. But biopsies and current medicine showed that it was Crohn's disease. In addition to that, I was experiencing issues with my inactive J-pouch. You see, when I was getting my ostomy at the age of 10 years old, the surgeons noticed that my J-pouch had hardened due to so much pouchitis and attached itself to the outside of my reproductive organs. It was suggested to me when I was 20 years that I should have that removed. I refused because there was no guarantee I'd be able to keep my reproductive organs and I wanted to have a family someday. So, many procedures in the GI lab continued. I got to know the staff of that lab very well and we developed a bond (with many inappropriate Crohn's jokes made after I'd had my Versed).

In 2006, I had just competed and won a pageant. One week later, I went into the GI lab for another necessary procedure. I woke up from my local anesthesia to hear the doctor tell me I was too closed up and the GI lab tools were not what was needed to do the job correctly. I was asked to refrain from eating or drinking and return the next day to be moved to a lab in X-ray where appropriate tools would be available for the success of the procedure. But I had to be put under general anesthesia instead of local. I was cool, calm, and collected (as I always was) until about 10 minutes before the procedure. I began to cry hysterically. When my mother asked me what was wrong, I told her I had a very bad feeling that something was going to happen to me. She soothed me and I convinced myself that I was letting my nerves get the better of me. I woke up in a haze to bed restraints, tubes in my nose, mouth, side and other areas, a nurse administering an ABG, and a large group of people surrounding me. During the procedure, pressurized air had to be inserted to continue. My unused J-pouch had a perforation in it and the air traveled throughout my whole body. The air put too much pressure on my chest and collapsed my left lung. I was in the ICU for nearly 3 days, and the hospital for 8.

I missed one month of college classes, but I was determined to return and did! My university worked so well with my medical situation and I graduated on schedule with my Education degree. I was also very involved with the Miss America Organization and went on to compete for a state pageant, singing an operatic area just 2 months after my lung collapsed. I didn't make the Top Ten, but I remember my roommate who was 2nd or 3rd runner-up. She loudly announced she was so mad she didn't win the pageant title. I told her I was simply happy to be alive.

This isn't a "woe-is-me" tale. I've become an elementary education teacher, won several Crohn's scholarships for my undergrad and graduate degrees, continued post-graduate education, served on at least 15 committees over the last 2 decades, traveled, gone skydiving, taken Irish step dance lessons, am a Zumba instructor, and got a tattoo that reminds me of the strength my parents have given me and continue to give me throughout my life as a Crohn's patient. I have a good life, a wonderful life, and a great outlook on life. Sometimes a person can have moments of sadness if their health isn't perfect. Well, I've never known good health to begin with, but I think these bumps make us appreciate life more.

But then the topic of money comes into play. There's only so much optimism a person can have, until a health system is unwilling to help a person with monthly payments. I have a wonderful job with good health benefits, but even good health benefits can't help a single lady trying to make all the bills on her own while simultaneously trying to battle the Crohn's that is now overtaking her skin. Oh - did you know that Crohn's is an autoimmune disease that can effect all parts of the digestive tract, but it can also attack your skin. In 2005, I had pyodermagrangrenosum, a flesh-eating bacteria that developed because one of my Crohn's medications stopped working on the Crohn's and started attacking the skin on my legs. So when I started developing skin issues 3 years ago, you could say I was a bit scared. Also, my inactive J-pouch was at it again and I had to make the difficult decision to have surgery with the possibility of waking up without a uterus. For a woman who still wants a family, you can maybe imagine the gut-wrenching decisions I had to make before going through with that surgery. But the pain was too extraordinary and I had exhausted all avenues with procedures and pain medication.

My latest surgery in 2018 was the most intense and was manned by an absolutely amazing surgeon who had many others working with him to guarantee a successful removal of my inactive J-pouch, along with some scar tissue removal. Many surgeries nowadays are able to be done laparoscopically and/or robotically. I had a bit of laparoscopic and a 5 1/2 scar reopened. I awoke to many tubes, pain, and the recovery ahead. It's amazing what the human body can do in terms of healing, but what the mind can do to sometimes break you down or trick you into thinking you're not amazing. I was lucky enough to have a stellar support system (mainly Mom and Dad) to help me stay focused on the process I was making and reminding me that "this, too, shall pass" and I'll be stronger for it.

Fast forward to today where my three-year journey with a dermatologist just led me to a subcutaneous Crohn's diagnosis, which led to a new medication. I'm excited to try the medication as soon as I am able to stop fighting with the insurance company over how expensive it is. Isn't it interesting how it so often comes down to money?

I hope you've enjoyed my story. I like to think of myself as funny, adventurous, optimistic, strong, and a person who doesn't need to ask for help. But I am now. If you're a person going through a medical issue or chronic disease, know that you're not alone. Back when I was diagnosed at 14 months old, my parents didn't have the amazing resource of the internet. They couldn't log on and find an entire community that could/would support them. I still don't know how they found their strength to make such difficult decisions with only the recommendations of doctors. They followed advice, their hearts, and did what was best for their daughter.

I'm also part of another tremendous organization called the Youth Rally, which is a camp for youth ages 11-17 who have had urinary or intestinal diseases/diversions. It's a camp each summer for youth, nurses, and counselors (all with urinary or intestinal disease/diversions) to attend. Youth Rally's motto is "You Are Not Alone". You can find more information at www.youthrally.org

Thank you for taking the time to read this!

Smile,

Abby