Many of us wake up each day with no pain. We get up and go about our morning/daily routine (showering, breakfast, leave for school or work). Have you ever stopped and thought that waking up with no pain is actually a blessing? For the person that suffers with Crohn’s disease or any type of chronic illness, the person may not have the luxury of waking up with no pain.
March is recognized as colon cancer awareness month. I did a three part series on my friends, Gary and Mary Pat Hancock. When I was discussing my topic for the month of March with one my close friends, Shay Ashford, she reminded me about having her total right colon removed in order to prevent the possibility of her getting colon cancer as a Crohn’s patient. Statistics show that every 1 out of 20 people will be diagnosed with colorectal cancer. People with Crohn’s have an even higher risk of obtaining it. http://www.everdayhealth.com. Initially, I thought she would be the week four blog post in the month of March to conclude the series, but there was so much to her story that needed to be shared as well. It would be impossible to tell it all in one week.
If you were like me, you might not even know what Crohn’s disease is. I had not heard of it until Shay told me about her diagnosis and how having Crohn’s has affected her life. Before I share part one her story of her with her battle of how having Crohn’s diseased changed her life, I need to explain what Crohn’s is and how it affects people.
Crohn’s disease is an chronic illness. It is inflammation of the bowel. Some of the symptoms are excruciating stomach pains, fatigue, severe diarrhea, malnutrition, and fatigue. Sometimes, the complications of Crohn’s can lead to death. There is no cure for Crohn’s disease. People that live with it have to learn how to live with it and attempt to do certain things to reduce pain and flare ups. http://www.mayoclinic.org
The symptoms can be mild or severe. They can develop or a period of time, or it can hit a person at all once. This is called the active time period. During this active period, the list of possibilities of symptoms goes on. Sadly, a person can experience several of these symptoms at once. Other symptoms besides the ones from above are blood in stool, mouth sores, reduced appetite, pain or drainage in the anus, inflammation in several areas (skin, eyes, joints, liver, or bile ducts), iron deficiency and kidney stones. If you have some of those symptoms, it does not mean you have Crohn’s. The time to see the doctor is when you are experiencing blood in stool, days of diarrhea, unexplained weight loss, unexplained fever, or abdominal pain http://www.mayoclinic.org. There are even times when nothing is going on. This period is called remission.With symptoms as these, I would personally call it moments of gratitude because I wouldn’t be in pain.
Since November 2003, this was not the case for Shay. It would be the moment that her life would forever change, and things would never be the same. Shay remembers it as if it were yesterday. She was in her college dorm room watching an episode of The Golden Girls when she would have experience her first symptoms; what we now know as her experiencing her first flare up. She felt sick to her stomach and had to go to bathroom. She was vomiting and experiencing diarrhea. Shay assumed it was something she’d eaten and didn’t put much thought into it. Around day 5 of the same thing going on, Shay was extremely weak that her basketball coach had to come feed her like an infant. The smell of food would not allow her to keep anything down. This went on for 7-8 days. After lasting that long, Shay knew it was more than a stomach bug or a bad case of diarrhea. She just didn’t know what it was.
The next severe flare up did not happen until the summer of 2004. Shay was on the track field with her basketball team. Her vision became blurry, and her ears began to hurt. The coach blew the whistle for the team to begin. Shay could not move because of not being able to see and the pain in her ear. She began to black out. Her coach yelled at her because she was not running with her teammates. He asked her was she scared to work out. He even gave her an option. He told her she could either start working out or pack her bags and go home. If you know Shay, she is an athlete. She has been involved in sports all her life. She was not a quitter. She gathered up some strength and began walking as fast as she could around the track. Every 10 steps, she was vomiting on the track. She only made 1 lap around the track, and she collapsed. She doesn’t remember how she got back to her dorm room.
This flare up lasted almost 2 weeks. She was experiencing constant diarrehea, rapid weight loss, no desire to eat, and thrush in the mouth. Shay was going from doctor to doctor to see what was going on with her body. Doctors were saying it was bacteria in her blood, the flu, or a stomach virus. She was having a side effects from the medications on the same time having a flare up, but she didn’t know it was a flare up. She was having to use the bathroom approximately 4 times in each hour. The diagnosis the doctors were giving her symptoms were absurd. She knew it wasn’t the flu. She knew it wasn’t a stomach virus. She lost 40 pounds in 3 days. Her teammates would be shocked when they saw her. Shay was in her room crying and praying for an answer. Due to her being in pain and not being able to practice, Chip, her father, came and withdrew her from school. Shay enrolled at ICC on a basketball scholarship. The head coach gasped when Shay arrived on campus. Shay was not the athlete she’d watch play in high school. Shay told her she was overcoming a sickness. She assured the coach that she would be able to practice if she would bare with her during this time.
In January 2005, there was a little relief. Shay went to a gastroenterologist and was diagnosed with Crohn’s. Even though she had the diagnosis, it didn’t help much. There was little information out about Crohn’s. The doctors didn’t know how to control it or how to reduce the symptoms. The doctors were changing her medications to see what happened. In the first 2 years, she changed about 6 times. The doctors told her to keep up with what foods made her sick and what didn’t. Her weight and health was in such bad condition. Typical body fat for athletes ranges from between 14-20% http://www.healthline.com. During this time, Shay’s body fat was reduced to 10%.
In August 2006, Shay transferred to the University of Alabama. The first year wasn’t bad. She would have min-flare ups that lasted 1-2 weeks instead of the 2-4 weeks before diagnosis. The college got a new basketball coach in June 2007. Shay was excited. Her stamina was coming back. She was looking forward to a new season. July 2007, Shay woke up that morning feeling dizzy. She went to the bathroom, and everything was coming out on both ends. When she flushed the toilet, all she saw was blood. Within 20 minutes, it was still going on, and Shay used the bathroom 4 more times. She freaked out. She called the coach, but he didn’t answer. She called the trainer. The trainer asked if she was able to drive to the school’s infirmary. Somehow, she was able to make it. It was nothing but the grace of God that allowed her to get there safely. During the drive, her head was spinning, ears were burning, and her vision was blurred. Once she was inside of the clinic, she passed out. She remembers the nurse slapping her in the face telling her to wake up and not to die on the floor. The nurse was kind and helped Shay clean herself up before the paramedics came to take her to the ER. When the paramedics came and rolled her out, Shay remembers seeing her teammates and coaches outside watching. All she could think about at that moment was being embarrassed because they’d seen her in that condition.
For 2 days, Shay remained in the hospital with no answers. Chip came and drove her to NMMC. The doctors discovered she had ulcers in her intestines. She had to receive blood at the hospital and another form of medication at the cancer center. After about 15 minutes of her second treatment, Shay had an allergic reaction to the Remicade and couldn’t breathe. The nurse inserted Benadryl into the treatment. They tried one more time doing the blood treatments at the cancer center, and the same thing occurred. That had to be stopped. It was trial and error with her body and her medications. Her medications had been changed many times. She had taken prednisone, flagly, Remicade, and some other pills. Now, her flare ups included everything she was already experiencing with bloody stools, receiving blood, and hospitalization that lasted for days. Would this ever stop? Would Shay ever get any relief?
I asked her how did the flare ups make her feel and how often was she having them. From 2004-2009, she was having flareups 4-5 times a year. 2010-2015, she was having them 2-4 times those years. 2016-2017, there were 6 flare ups. 2016 was a very bad year for her. Later, you’ll read why. Her answer to how the flare ups made her feel was the she had no control over her body. She was afraid of going places in fear of the possibility of having to go to the bathroom. There was no word to describe the pain that she was feeling. She felt that she had lost her true identity of Shay because of Crohn’s. She didn’t want to be a burden to a potential spouse because of her illness. She felt bad because of her parents or grandmother having to take off work to take care of her. She felt useless as a person.
The first time her grandmother, Lula, saw her. She began to cry. She said my baby is dying. That was a moment that Shay will never forget. In actuality, Mrs. Lula did not realize how true of a statement she made. I recalled one weekend going to the movies. I’d seen the movie, A fault in our stars. The movie was about a two teenagers with terminally and chronically ill patients that fell in love. Their parents did not want them to be together because they knew the end results for their lives. At the end, they die. After it was over, Shay and I were on the phone. I was in tears about the movie. I will never forget Shay telling me that is how she feels. There is not a day that her body is not in pain. She was smiling on the outside and going through her day, but she was in severe pain internally. There was a point that Shay should have died, she could have died, and Shay wanted to die because of the pain, how her life completely changed, and how things were no longer the same. In 2016 (during one of her flare ups), Shay was in excruciating pain and was unbearable. To escape the pain and misery, she asked her father to take his gun and shoot her…….