Lindsey's Story

Lindsey, Age 10

I am ten years old and my name is Lindsey. I have a terrible disease called Crohn's Disease. I've been sick my whole life. My stomach hurts all the time, then I throw up a lot. Sometimes I have very high fevers. I don't want to eat because my stomach hurts too much. I sometimes go to the bathroom fifteen times a day and there is usually a lot of blood in my poop. It's really scary. I take all kinds of medicines but they don't help me feel better and sometimes they make me worse. I was scoped in October and my entire colon is diseased.

The Doctors put something in my chest so that my parents can give me medicine and food through a port. If it gets infected I could die. My mom and dad have had to give me shots every night for growth because the steroids have caused me to not grow and it hurt my bones and sometimes they have to give me enemas every night. I cry a lot when they have to do it. I stay at the hospital a lot too. Then I can't play with my sister or my toys and that is no fun either.

I have to wear a back brace because I ended up with multiple spinal compression fractures from long term steroid use.

I have not ever felt well and able to play and do things other kids do. I try to be brave but sometimes it is very hard for me.

I am now completing first grade and it has been hard to attend school because I am sick allot and it is hard to keep up with the work when I am absent allot. I have seen all my friends grow this year, but I am still the smallest. I had to give up doing tap because I was too afraid I would fall and hurt my back again.

My mom and dad tell me we have been through the majority of the medications to treat this disease and if we cannot find a medicine that works I will have to have a colectomy. I am scared but I don't want to always have pain and always have to worry about where the bathroom is when we go somewhere. It is hard for us to take any vacations because I cannot be away from my doctors for a long time and I can get very sick very fast.

The doctors now have me on Remicade infusions and it helps but it doesn't last. I have to get the infusions every four weeks to not bleed from my rear. I am also on Imuran.

My mom and my aunt and my grandpa all have IBD too. They think I was genetically predisposed to the disease but it was triggered by a milk protein allergy when I was a infant. I have had Crohn's since I was three months old.

I can't make friends like other kids do because I get sick a lot. I am afraid when I am at school I will have an accident in my pants. I'm always afraid to do things and go places because of having an accident.

Please help the kids like me that are suffering from this disease. Please find the cure so I do not have children someday that have to go through what my family and I have. Please be the voice for those children who cannot speak about how terrible and devastating this disease is. We do NOT lead NORMAL lives and probably never will--Inflammatory Bowel Disease took that away from many of us. It destroys you piece by piece. Please help us find the answers... support research for this disease to find a cure.

I want to be able to do what other kids do and I never will with this disease unless they make good medicine. Someday I might have to wear a bag that my poop goes in because they may have to take away my colon. I do not want that. It's creepy and it won't cure me anyway. I wish they could help me. Will you help the children with IBD?

October 27, 2004

Lindsey is now 11 years old and in April of 2002 she underwent surgery for a permanent ileostomy and has gained 38 pounds since her surgery. She is very active in raising funds and awareness for IBD research in hopes of someday finding a cure for her disease.

July 1,2006

Lindsey is now 12 years old and entering 7th grade.

This year(2006) was not such a good one--mainly from Crohns complications like I had to have my gallbladder removed, I had to have my stoma revised and when that didn't work I had to have surgery to have it moved to another side. I missed 112 days of school this year but with hard work and tutoring I made the honor roll every marking period. I am going to the United Ostomy Camp in San Diego this year to help make a difference in other peoples' lives.

May 18,2007

Lindsey is now 13 years old and this year too was a rough one for her.

On October 15,2006 she was rushed into emergency surgery as her intestines twisted(volvulus) and she went into shock--the surgery went well but she got "dumping" syndrome and was in ICU several weeks--was pretty touch and go and she was on a ventilator. She then got pneumonia and we were in the hospital for a total of 9 weeks. She still has pain and her pain is being managed by a pain patch and she has missed allot of school this year but she keeps on trucking on although she has days where she says she is tired of being brave.

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