Hello all Crohn's friends 
I just discovered and joined this forum today, and I am quite impressed. I wish that I had found this or known about it years ago. It would have been amazing to have this incredible support from people living with Crohn's, especially because we all know how hard it is for others to understand.
So I just thought I would introduce myself and share my story with you all, and I will hopefully get to help out some of you scattered around the site.
My name is Karissa. I am a senior at Elms College in Chicopee, MA, majoring in English and Secondary Education. I was diagnosed with Crohn's disease when I was eleven years old in June 2001. At the time, I suffered from mild and infrequent stomach pains and had lost significant weight. I was diagnosed after a series of testing, the usual colonoscopy, endoscopy, CT scan, etc. I was prescribed the steroid Prednisone, but at the time, I was terrified of swallowing pills. My parents realized that forcing my eleven year old self to take steroids was not the right choice for us. My fear was a blessing in disguise actually because I was given the opportunity to avoid medication for six years. My parents dived into natural remedies and the organic world. They researched endlessly, and I tried everything and anything that did not include a pill. I began taking Primal Defense and Perfect Food by Garden of Life. These probiotics helped me a lot. Yes, flare-ups still visited me, but I gained weight, and the results of these natural remedies were incredible. My primary doctor told me that there was no way that these remedies would help at all, but luckily my parents did not listen. Along with probiotics, I tried countless other natural remedies over the years. Whenever I was going through a time without flare ups, she would always say, "You've been feeling so good, knock on wood." And we would both knock.
During the summer of 2007, my family and I were on vacation in Martha's Vineyard when I experienced my most painful flare-up yet. My parents rushed me to the hospital on the island, where they discovered terrible inflammation after a CT scan. The hospital was not equipped to deal with the severity of my disease, so my dad and I were helicoptered to Boston Children's Hospital. There, I celebrated my seventeenth birthday, did not eat for a week, had my first NG tube and PICC line, read Harry Potter 7 in a hospital bed, and was finally forced to go on Prednisone. I had a colonoscopy in the hospital, and my doctor accidentally leaned on my right leg during the procedure, resulting in a nerve compression. I lost feeling and movement from my knee down. I was fitted for a leg brace, went to physical therapy, and was on crutches. Luckily, the nerve healed and the leg brace came off a day after my senior year of high school. No one, except my close friends, knew what had happened to me over the summer.
By this time, the steroids were preventing major flare-ups, but I was eating more than I ever had before. My face blew up along with the rest of me, and honestly, I avoid looking at pictures from that time. I didn't learn to drive until that spring because of my nerve compression and had to quit dance. I was taken off steroids about six months later and put on Pentasa. That didn't work. I started on 6-MP (Mercaptopurine). I am a very determined person and super involved in school, so that part of me didn't change. I missed countless days of school but managed to keep up with my work. I was afraid to go too far away for college, so I only looked at schools in Western MA. I ended up falling in love with the Elms and moved in September 2008.
I love college but the cafeteria food killed me. I was sick all of the time, lost tons of weight again, missed countless classes, the usual. I moved back home after one semester because I was too sick. I was put on Humera, which had to be injected. At home, I seemed to be getting better, but encountered another severe flare-up in October 2009. My parents drove me to Boston Children's, where I stayed for three weeks. I had developed a jejunoileal fistula and was put on antibiotics. After an MRI, we discovered that the antibiotics did not help. It was then that I, who had the final decision, decided to go through with surgery.
I had an ileocecectonomy where they removed about a foot of my small intestine and my ileocecal valve. It was absolutely the most difficult, terrifying, emotional experience I have gone through. I woke up with a two inch scar on my abdomen, along with two tiny others, an epidural, a catheter, and NG tube. Pain medications were my best friends. Multiple nurses had to help me move from my hospital bed to the armchair next to it. It was absolutely excruciating. I can do anything now. I am sure of that.
After three weeks in the hospital, I recovered at home for another three weeks. My parents, siblings, and friends were absolutely incredible. I missed six weeks of my fall semester. I kept in contact with my professors throughout the process, and one even mailed work to me in the hospital! I made up all of the work, and finished the semester with all A's, Dean's List. No matter how sick I am, it is no excuse for my schoolwork to suffer. It never has. I won't let it.
Ever since surgery, my life has flipped, swirled, and illuminated. I am a normal, healthy weight. I can eat an unfathomable variety of foods that I could not and would not even touch before. I work out one to two times a day, where before, crunches would send me into a flare-up. I work thirty-five hours a week, which would have been absolutely impossible two years ago. I moved back to Elms, have a great roommate, an amazing group of friends, am involved in everything. I love college. I love being able to eat salad. I love that my stomach doesn't make noises during class anymore. I love that my right side doesn't hurt to the touch anymore. I love being able to elliptical three miles without a problem. I love being un-sick. Yes, I know that it could come back, and hey, who knows what the future holds. But until then, I plan on being as healthy as I can be, eating right and exercising constantly. I plan on feeling amazing, and living my life, experiencing absolutely everything. My high school years feel hazy now. I feel like I was sleep walking through them because of the constant pain and absences, and now I'm alive.
Sorry this was so long, but hopefully my story will help all of you suffering right now. I am proof that you can make it. You can live your life with Crohn's. Everyone's experience and disease is different, but YOU CAN DO IT. Pain makes us stronger, trust me. Keep knocking on that wood.
Also, my friend Laura, who has IBS, created the Take Steps for Crohn's and Colitis team, Karissa and Laura's Fabulous Friends. If you would like to donate to this unforgettable cause, search for me on the Take Steps Springfield site! I can't post links on here yet. I would really appreciate it! Or see if there is a walk in your area, and start a team!
I applied for the UCB Crohn's Scholarship and will be finding out this month! Fingers crossed- we all know how expensive college is.
So I am currently on 6-MP and avoid these foods: corn, seeds, nuts, steak, pork, ham, apples, and grapes. I am also a strong believer in natural remedies and take vitamins everyday. I believe that going to a chiropractor is important too. Blood work is a must. Taking baths while experiencing a flare-up always helped me. Laying on the couch instead of a bed because you can pull your legs to your stomach helps. My mom is licensed in reflexology and massage therapy, and reflexology really helped during flare-ups. Hydrate hydrate hydrate! Whether you are in pain, in a flare-up or in remission. Carry water with you everywhere. I drink about five water bottles a day. Eat bland foods the day after a flare-up. My go-to was always Saltines. Find something that helps you de-stress. Dealing with stress is half of the battle and is one of the causes of flare-ups. I read constantly, write poetry and stories (actually writing a novel/memoir about Crohn's right now, but it's veryvery rough), do zumba, etc. Do things for you!
Those are all of the tips that I can think of at the moment, but if you have any questions about anything at all, leave a comment!
Oh and to those parents of children with Crohn's out there, trust me, you are the lifesavers. We couldn't even imagine doing this without you. Thanks Mom and Dad!
That's it! Sorry this was so long. Feel good today!
Karissa
I just discovered and joined this forum today, and I am quite impressed. I wish that I had found this or known about it years ago. It would have been amazing to have this incredible support from people living with Crohn's, especially because we all know how hard it is for others to understand.
So I just thought I would introduce myself and share my story with you all, and I will hopefully get to help out some of you scattered around the site.
My name is Karissa. I am a senior at Elms College in Chicopee, MA, majoring in English and Secondary Education. I was diagnosed with Crohn's disease when I was eleven years old in June 2001. At the time, I suffered from mild and infrequent stomach pains and had lost significant weight. I was diagnosed after a series of testing, the usual colonoscopy, endoscopy, CT scan, etc. I was prescribed the steroid Prednisone, but at the time, I was terrified of swallowing pills. My parents realized that forcing my eleven year old self to take steroids was not the right choice for us. My fear was a blessing in disguise actually because I was given the opportunity to avoid medication for six years. My parents dived into natural remedies and the organic world. They researched endlessly, and I tried everything and anything that did not include a pill. I began taking Primal Defense and Perfect Food by Garden of Life. These probiotics helped me a lot. Yes, flare-ups still visited me, but I gained weight, and the results of these natural remedies were incredible. My primary doctor told me that there was no way that these remedies would help at all, but luckily my parents did not listen. Along with probiotics, I tried countless other natural remedies over the years. Whenever I was going through a time without flare ups, she would always say, "You've been feeling so good, knock on wood." And we would both knock.
During the summer of 2007, my family and I were on vacation in Martha's Vineyard when I experienced my most painful flare-up yet. My parents rushed me to the hospital on the island, where they discovered terrible inflammation after a CT scan. The hospital was not equipped to deal with the severity of my disease, so my dad and I were helicoptered to Boston Children's Hospital. There, I celebrated my seventeenth birthday, did not eat for a week, had my first NG tube and PICC line, read Harry Potter 7 in a hospital bed, and was finally forced to go on Prednisone. I had a colonoscopy in the hospital, and my doctor accidentally leaned on my right leg during the procedure, resulting in a nerve compression. I lost feeling and movement from my knee down. I was fitted for a leg brace, went to physical therapy, and was on crutches. Luckily, the nerve healed and the leg brace came off a day after my senior year of high school. No one, except my close friends, knew what had happened to me over the summer.
By this time, the steroids were preventing major flare-ups, but I was eating more than I ever had before. My face blew up along with the rest of me, and honestly, I avoid looking at pictures from that time. I didn't learn to drive until that spring because of my nerve compression and had to quit dance. I was taken off steroids about six months later and put on Pentasa. That didn't work. I started on 6-MP (Mercaptopurine). I am a very determined person and super involved in school, so that part of me didn't change. I missed countless days of school but managed to keep up with my work. I was afraid to go too far away for college, so I only looked at schools in Western MA. I ended up falling in love with the Elms and moved in September 2008.
I love college but the cafeteria food killed me. I was sick all of the time, lost tons of weight again, missed countless classes, the usual. I moved back home after one semester because I was too sick. I was put on Humera, which had to be injected. At home, I seemed to be getting better, but encountered another severe flare-up in October 2009. My parents drove me to Boston Children's, where I stayed for three weeks. I had developed a jejunoileal fistula and was put on antibiotics. After an MRI, we discovered that the antibiotics did not help. It was then that I, who had the final decision, decided to go through with surgery.
I had an ileocecectonomy where they removed about a foot of my small intestine and my ileocecal valve. It was absolutely the most difficult, terrifying, emotional experience I have gone through. I woke up with a two inch scar on my abdomen, along with two tiny others, an epidural, a catheter, and NG tube. Pain medications were my best friends. Multiple nurses had to help me move from my hospital bed to the armchair next to it. It was absolutely excruciating. I can do anything now. I am sure of that.
After three weeks in the hospital, I recovered at home for another three weeks. My parents, siblings, and friends were absolutely incredible. I missed six weeks of my fall semester. I kept in contact with my professors throughout the process, and one even mailed work to me in the hospital! I made up all of the work, and finished the semester with all A's, Dean's List. No matter how sick I am, it is no excuse for my schoolwork to suffer. It never has. I won't let it.
Ever since surgery, my life has flipped, swirled, and illuminated. I am a normal, healthy weight. I can eat an unfathomable variety of foods that I could not and would not even touch before. I work out one to two times a day, where before, crunches would send me into a flare-up. I work thirty-five hours a week, which would have been absolutely impossible two years ago. I moved back to Elms, have a great roommate, an amazing group of friends, am involved in everything. I love college. I love being able to eat salad. I love that my stomach doesn't make noises during class anymore. I love that my right side doesn't hurt to the touch anymore. I love being able to elliptical three miles without a problem. I love being un-sick. Yes, I know that it could come back, and hey, who knows what the future holds. But until then, I plan on being as healthy as I can be, eating right and exercising constantly. I plan on feeling amazing, and living my life, experiencing absolutely everything. My high school years feel hazy now. I feel like I was sleep walking through them because of the constant pain and absences, and now I'm alive.
Sorry this was so long, but hopefully my story will help all of you suffering right now. I am proof that you can make it. You can live your life with Crohn's. Everyone's experience and disease is different, but YOU CAN DO IT. Pain makes us stronger, trust me. Keep knocking on that wood.
Also, my friend Laura, who has IBS, created the Take Steps for Crohn's and Colitis team, Karissa and Laura's Fabulous Friends. If you would like to donate to this unforgettable cause, search for me on the Take Steps Springfield site! I can't post links on here yet. I would really appreciate it! Or see if there is a walk in your area, and start a team!
I applied for the UCB Crohn's Scholarship and will be finding out this month! Fingers crossed- we all know how expensive college is.
So I am currently on 6-MP and avoid these foods: corn, seeds, nuts, steak, pork, ham, apples, and grapes. I am also a strong believer in natural remedies and take vitamins everyday. I believe that going to a chiropractor is important too. Blood work is a must. Taking baths while experiencing a flare-up always helped me. Laying on the couch instead of a bed because you can pull your legs to your stomach helps. My mom is licensed in reflexology and massage therapy, and reflexology really helped during flare-ups. Hydrate hydrate hydrate! Whether you are in pain, in a flare-up or in remission. Carry water with you everywhere. I drink about five water bottles a day. Eat bland foods the day after a flare-up. My go-to was always Saltines. Find something that helps you de-stress. Dealing with stress is half of the battle and is one of the causes of flare-ups. I read constantly, write poetry and stories (actually writing a novel/memoir about Crohn's right now, but it's veryvery rough), do zumba, etc. Do things for you!
Those are all of the tips that I can think of at the moment, but if you have any questions about anything at all, leave a comment!
Oh and to those parents of children with Crohn's out there, trust me, you are the lifesavers. We couldn't even imagine doing this without you. Thanks Mom and Dad!
That's it! Sorry this was so long. Feel good today!
Karissa
