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Eric’s Story: Growing Up with Crohn’s

Part 1 of a two-part series

Eric James Thatcher

 

Crohn’s and colitis are painful, lifelong diseases that affect the gastrointestinal (GI) tract with painful inflammation and other medical complications. I have suffered from Crohn’s disease since I was about thirteen years old, more than nineteen years ago.

 

Childhood


I am the youngest of four children (two brothers and one sister). I grew up in a typical middle-class working family in Rhode Island. As a youngster I loved playing baseball and tag, practicing karate, and spending hours outdoors with my friends and our German shepherd, Lupo.

 

When I was around eleven, I developed a mysterious spot on my back. Soon afterwards I developed terrible pain in my hips and other joints, and then spots on my legs, which doctors identified as Henoch-Schönlein purpura (HSP). It was a painful condition that caused small blood vessels to swell and become irritated.

 

Several years later, I experienced constant abdominal gas and stomach pains followed by bloody stools. I became bedridden, missing school and no longer able to play with my friends and family, and was diagnosed with colitis and severe inflammation of my large intestine. I experienced long hospital stays and long periods with no solid food. Via an IV line, I received my nutrition in the form of lipids and parenteral nutrition (PN)—poor substitutes for burgers and fries.

 

As I continued to lose weight, my GI doctors were frustrated and unsure of what to do next. My parents brought me to a different children’s hospital, where I was admitted on my fifteenth birthday. Over time it became clear that my large intestine was overwhelmed by lesions that no longer responded to a gambit of medicines, including high doses of prednisone.

 

The disease continued to ravage my body and seemed to hijack my life. The doctors determined that my large intestine would have to come out, resulting in a J-pouch and a temporary colostomy. At this time, the doctors became convinced I had Crohn’s disease, and not colitis. I was bedridden for weeks at a time and had to be tutored because I missed so many days of school, including most of my junior and senior years in high school.

 

At times I was going to the bathroom fourteen to twenty times a day. I was constantly in pain, and physically and mentally unable to date or attend school functions, including proms and pep rallies. I was hospitalized a week prior to my graduation in 1999, but with the love and support of my family, I was able to make it to the ceremony and received my diploma, along with a scholarship to attend college.

 

Young Adulthood

 

Within a year of graduation the Crohn’s seemed to be in remission. I began taking courses at a local community college. However, as finals neared in my first semester, I had a bad flare-up and was hospitalized. It was impossible to take my finals. Once I was back in remission I reenrolled, but my disease reared its ugly head and I had to withdraw from school.

 

I then tried to find a job, but most employers were either ignorant of or indifferent to Crohn’s disease. I wasn’t able to keep a job or seek new employment.

 

My illness has made me stoic and able to handle many things that would consume others, though at times I get angry and depressed that my childhood was stolen from me. Now I wondered if I would ever have a future. Thankfully my family has always been there to support me spiritually and assist me financially, though I want nothing more than to one day be able to live independently.

 

At the children’s hospital, my doctors had told me there would be peaks and valleys, good days and bad. However, in time the bad days started to outnumber the good as my flare-ups—and hospitalizations—increased. Now a young adult, I transferred my mountain of medical records to a hospital in Rhode Island.

 

I began to develop painful fistulas on my buttocks that made it near impossible to sit or walk. Each fistula required surgery where they would cut open the sore and insert a drain to let it heal from the inside out. If the sore healed incorrectly, it required a new incision and drain.

 

Over the next several years my flare-ups increased. I was unable to eat most solid foods, and my weight dropped dangerously low. An upper endoscopy revealed lesions covering my pouch and small intestine. I had no quality of life.

 

Major Intestinal Surgery

 

A decision was made to remove the J-pouch and a portion of my small intestine. It meant I would have an ileostomy. This was a difficult decision, but I was sick of being sick and of watching others live life instead of living it myself. With the resection completed, the doctor felt I should start to feel better and be able to get on with life.

 

The good news was that I did not have any more fistulas. The bad was I still suffered from occasional flare-ups, which over the next several years would increase with frequency and leave me bedridden for weeks at a time.

 

A subsequent endoscopy showed that a portion of my small intestine was inflamed. My surgeon recommended removing the diseased section and reattaching it. Little did I know that during this surgery a large portion of my small intestine would be removed, leaving me with short bowel syndrome (which meant I had very little bowel, needed to absorb nutrients into the body).

 

I was unable to eat and keep on weight. Most foods gave me terrible gas and left me bloated. Psychologically, I didn’t want to eat. I suffered dramatic weight loss, and I was hospitalized routinely for severe dehydration. In late 2012, my GI doctor became concerned that if this weight loss continued, I would most likely die. He strongly suggested I contact a center that specialized in intestinal failure (IF) and be seen by their experts.

 

Did I mention that my sister Amy also suffers from Crohn’s? Fortunately, she presents differently than I do and does not have all of my complications, though her life, too, has been challenged by the disease. Both Amy and I receive an IV treatment of Remicade every two months. If we don’t receive this treatment the two of us would be crippled up with painful arthritis. Once I was at the hospital receiving my treatment when I looked over at the gurney next to mine and was shocked to see Amy. She does not live at home and this was not planned.

 

My Trip to an IF Center

 

Several days into 2013, my family started planning my trip to the IF center, located several hours (by plane) away from our home in Rhode Island. My dad was retired and would accompany me while mom, who worked full time, would hold down the fort during our absence.

 

My dad and I flew out on in March during a winter snowstorm. After several delays and layovers, we finally arrived late in the evening. Initially there were problems with scheduling, but in the end they saw me the following day.

 

The clinic was one the cleanest, best run medical facilities I have ever visited. My Dad likened it to “the Disney World of medical care.” Knowing we had traveled hundreds of miles, they moved mountains to get us through many appointments and labs during the eight days we were in town.

 

The nurses at the GI clinic showed me how to treat my stoma site, which was very sore due to bile constantly leaking from my appliance, and an orthopedic specialist diagnosed bone spurs in my right hip that would require surgery at a later time. I missed my mom and family very much, but it was comforting to have my dad at my side. I can’t imagine anyone going through what I have without the support of a loving family. I draw much of my strength, values, and faith from them.

 

A Short-lived Remission

 

Once we were back home, my GI doctor wasted no time setting me up with a surgeon who, along with his medical team, specialized in tough-to-treat cases like mine. I was placed on home parenteral nutrition (HPN), administered via an IV pump, for twelve to sixteen hours each day, five days a week, for four months.

My doctor also prescribed an injectable medication that would slow down the output in my colostomy. I only needed one shot each month. However, my insurance company would not authorize this costly medication and instead substituted one that I have to inject up to three times each day.

 

When I began treatment my weight was 113 lbs. It eventually rose to about 134 lbs. However, at 5’ 11” I was still severely underweight. I get about four hours of sleep each night due to frequent bathroom trips (eight to fourteen) and pain in my hips.

 

On New Year’s Day 2014, I was rushed to the local hospital with severe dehydration. I thought what a way to start the New Year. Over the next several months I would be hospitalized several more times for dehydration and dramatic weight loss (down to 110 lbs.). My surgeon and his team put me back on HPN, six days a week, fourteen hours a day so I could gain back some weight and strength.

 

As with all medications and supplements, there is the potential for nasty side effects with HPN. Over a prolonged period of time it may damage the liver. There is also an increased chance of infection, which can make you seriously ill or even kill you. I had felt that if misery had a lottery, I would have been the grand prize winner.

 

A few weeks before Thanksgiving, I was experiencing symptoms of severe dehydration, including low blood pressure, lightheadedness, and a loss of balance when I stood up from a sitting position. My parents insisted I go to the emergency room (ER), where I received several bags of an IV saline solution. This worked, but only temporarily. I made several more trips to the ER.

 

On November 15, chills wracked my entire body and my mom bundled me in blankets in an attempt to warm and comfort me. This seemed to work—until the following day, when I began shaking violently. My Dad drove me to the local ER, where I was admitted for severe dehydration. Once again they administered bags of an IV saline solution.

 

Blood work indicated a high white blood cell count, a sure sign of an underlying infection. They determined I had double pneumonia and three infections near my PICC line. They stopped administering HPN due to the severe infection. I remained hospitalized for twenty-eight days. Using the strongest antibiotic available, they were finally able to get the pneumonia under control.

 

While I was in the hospital my Grandma Barry was placed in a nursing home. I was very close to her and my late grandfather. Both sets of grandparents had always made it a point to call or visit me. I could tell my grandma’s condition was worsening, though my family wouldn’t tell me directly as they did not want to upset me.

 

Christmas was little more than a week away. My doctors wanted me to remain in the hospital to receive IV antibiotics, but I felt I needed to visit my grandmother. I discharged myself and my parents and I went so see her. Despite her weakness she managed a gentle hug and big smile for me. Several days later, on Christmas morning, she passed away peacefully.

 

Read more about Eric’s experiences leading up to, including, and just after his intestinal transplant  (from LifelineLetter, May/June 2017).

 

 

Updated 6/16/2017

 

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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