As many of you know, I am living with severe Crohn's Disease. However, many of you do not know my story and since it is Crohn's and Colitis Awareness Week, I thought I would share it with you! You've been warned, Crohn's Disease can be graphic and I will not be sparing any details. This post is not for the squeamish.
At the age of 19, I was just finishing up my first year of college. I was loving life and excited to be going home to spend the summer with my parents. However, as finals approached, I started to feel sick all of the time. I was getting terrible stomach cramps and having to sprint to the bathroom for fear that I wouldn't make it. I was even having some blood in my bowel movements. I chalked it up to stress and was too embarrassed to ask for help.
When I got home for the summer, I just kept getting progressively worse. I thought it was a bad case of the stomach flu but my family doctor, who had been my physician since I was an infant, warned me that if I didn't start to get better in a week it was highly probable that I had Crohn's Disease.
We had already discovered through various blood work that my red blood cell count was very low and that I was low on protein and several other essential electrolytes. We decided that all of these things could be due to my poor diet at college, but just in case, he sent me back to the lab for more tests, one of which was testing my sedimentation rate. Sed rates relate to how much inflammation is present in the body. The normal range is anywhere from 0-20. When my doctor called me later that evening, I knew something was wrong. He said my sed rate was a skyrocketing 120 and that he would like me to call the local GI on Monday to schedule a colonoscopy, as he was fairly certain that I had Crohn's Disease.
Over the weekend I got progressively worse. Before Monday had even arrived, I was begging my mom to take me to the Emergency Room so that I could be admitted to the hospital. My pain was excruciating. I couldn't sit down because I had inflammation at the end of my colon that made sitting extremely painful. It felt like someone was stabbing me with a dull knife over and over in the lower, right quadrant of my abdomen. I was sleeping 18+ hours a day and never felt rested. So eventually we did go to ER and they admitted me from there. I was to have my colonoscopy done the next day.
After my colonoscopy, my GI said that I had some of the most severe ulcerations she had ever seen in my small bowel and my colon. She wouldn't know for sure until the biopsy results came back, but she was fairly certain that I had Crohn's Disease and I was started on a high dose of prednisone. The prednisone really helped for about a week. Then one day I woke up in excruciating pain and I passed a bowel movement that was all blood. It was back to the hospital I went. This time I was admitted and stayed in the hospital for 3 weeks. While in the hospital I was on high dose IV steriods, a liquid diet, and a drug called Asacol, which is meant to help the inflammation by coating the lining of your intestines. After my three weeks in the hospital, and 5 units of blood later, I was discharged yet again.
As soon as I got home I had another bloody bowel movement and it was back to the hospital. This time I was admitted for another 2 weeks. Back on the IV Steroids and the liquid diet and still no change in my disease. It was time to talk about other options. At this point I had lost 30 pounds, weighing in at a measely 112 at 5'7". I had 8 units of blood transfused over a 5 week period. A surgeon came to talk to me about the possibility of having part of my small bowel removed and having an ileostomy. My doctor discussed a myriad of drugs with me that all sounded terrifying. Her recommendation was something called Remicade, an immune suppressant that works by suppressing your immune system, therefore stopping the inflammatory process. I chose to go for it, figuring it was a better option than surgery. Thank God that it worked. The day after my first infusion I felt 1000xs better. My sed rate had dropped 20 points over night and I had energy for the first time in months. The Hell I had been living in for 4 months was finally over.
Needless to say, it was a long road to recovery. It took me a year to gain back all of the weight I had lost. I was so weak that I could barely walk. I had to transfer college campuses. I returned to dance and had a personal trainer to help me gain back my strength. I had so many food phobias that I had to overcome because I never knew what was going to trigger my symptoms.
I would never wish Crohn's Disease upon anyone else. It is a day to day struggle. But, I wouldn't trade the things I learned from living with a chronic disease for anything. It has made me a stronger, more mature person. I learned that life is full of surprises and planning everything out doesn't always work. I learned to empathize with others because they may be going through Hell on the inside and look completely fine on the outside. I learned to appreciate doctors for what they can do, and realize their limitations. I learned to slow down and put my health and happiness above the health and happiness of others. I learned that you can take charge of your own health and you don't have to let doctors dictate your course of treatment completely. Research the medicines you are going to put in your body heavily. Research your disease. Knowledge is power.
Remember, hidden disease are real and are a daily struggle for many. Crohn's and Colitis are just one of the myriad of autoimmune disorders that plague so many people today. Be sensitive, you never know what people are going through.
When I got home for the summer, I just kept getting progressively worse. I thought it was a bad case of the stomach flu but my family doctor, who had been my physician since I was an infant, warned me that if I didn't start to get better in a week it was highly probable that I had Crohn's Disease.
We had already discovered through various blood work that my red blood cell count was very low and that I was low on protein and several other essential electrolytes. We decided that all of these things could be due to my poor diet at college, but just in case, he sent me back to the lab for more tests, one of which was testing my sedimentation rate. Sed rates relate to how much inflammation is present in the body. The normal range is anywhere from 0-20. When my doctor called me later that evening, I knew something was wrong. He said my sed rate was a skyrocketing 120 and that he would like me to call the local GI on Monday to schedule a colonoscopy, as he was fairly certain that I had Crohn's Disease.
Over the weekend I got progressively worse. Before Monday had even arrived, I was begging my mom to take me to the Emergency Room so that I could be admitted to the hospital. My pain was excruciating. I couldn't sit down because I had inflammation at the end of my colon that made sitting extremely painful. It felt like someone was stabbing me with a dull knife over and over in the lower, right quadrant of my abdomen. I was sleeping 18+ hours a day and never felt rested. So eventually we did go to ER and they admitted me from there. I was to have my colonoscopy done the next day.
After my colonoscopy, my GI said that I had some of the most severe ulcerations she had ever seen in my small bowel and my colon. She wouldn't know for sure until the biopsy results came back, but she was fairly certain that I had Crohn's Disease and I was started on a high dose of prednisone. The prednisone really helped for about a week. Then one day I woke up in excruciating pain and I passed a bowel movement that was all blood. It was back to the hospital I went. This time I was admitted and stayed in the hospital for 3 weeks. While in the hospital I was on high dose IV steriods, a liquid diet, and a drug called Asacol, which is meant to help the inflammation by coating the lining of your intestines. After my three weeks in the hospital, and 5 units of blood later, I was discharged yet again.
As soon as I got home I had another bloody bowel movement and it was back to the hospital. This time I was admitted for another 2 weeks. Back on the IV Steroids and the liquid diet and still no change in my disease. It was time to talk about other options. At this point I had lost 30 pounds, weighing in at a measely 112 at 5'7". I had 8 units of blood transfused over a 5 week period. A surgeon came to talk to me about the possibility of having part of my small bowel removed and having an ileostomy. My doctor discussed a myriad of drugs with me that all sounded terrifying. Her recommendation was something called Remicade, an immune suppressant that works by suppressing your immune system, therefore stopping the inflammatory process. I chose to go for it, figuring it was a better option than surgery. Thank God that it worked. The day after my first infusion I felt 1000xs better. My sed rate had dropped 20 points over night and I had energy for the first time in months. The Hell I had been living in for 4 months was finally over.
Needless to say, it was a long road to recovery. It took me a year to gain back all of the weight I had lost. I was so weak that I could barely walk. I had to transfer college campuses. I returned to dance and had a personal trainer to help me gain back my strength. I had so many food phobias that I had to overcome because I never knew what was going to trigger my symptoms.
I would never wish Crohn's Disease upon anyone else. It is a day to day struggle. But, I wouldn't trade the things I learned from living with a chronic disease for anything. It has made me a stronger, more mature person. I learned that life is full of surprises and planning everything out doesn't always work. I learned to empathize with others because they may be going through Hell on the inside and look completely fine on the outside. I learned to appreciate doctors for what they can do, and realize their limitations. I learned to slow down and put my health and happiness above the health and happiness of others. I learned that you can take charge of your own health and you don't have to let doctors dictate your course of treatment completely. Research the medicines you are going to put in your body heavily. Research your disease. Knowledge is power.
Remember, hidden disease are real and are a daily struggle for many. Crohn's and Colitis are just one of the myriad of autoimmune disorders that plague so many people today. Be sensitive, you never know what people are going through.
Good job, Stef! What a great blog!
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