Living with Crohn's Disease

I was diagnosed with Crohn's Disease when I was 22 years old, but had suffered many flareups as a child. I was always told I had a nervous stomach because I was worried about something or it must be the stomach flu again. I truly felt it was my fault that I was causing the pain through my thoughts. I was always worrying about school as it was always difficult for me. The educational system was structured as a learning environment that did not fit my needs. It was one that discouraged me to learn in the current format it was being communicated. It was before computers and Internet as these two creations entered my world it changed 180 degrees into a positive direction.

My father insisted in helping my mother successfully catch her dream of completing bachelor's degree in education. After completing her education at the local community college she then was accepted at the University. This would require that our family move away for two years and I had to leave all my friends and live in a town where friends were only there for one semester and then they would move when their parents graduated. My father lived three hours away and came every weekend, but it was a strain on our family and I internalized everything.

After my mother's graduation my grandmother moved in with our family for five years. We became very close. When my grandmother died I instantly became ill with stomach pain and when she was gone my emotions spilled over and a flareup was in motion. I remember hearing the adults say I was faking it to get attention! Oh how I heard that umpteen times in my life...Does that sound familiar?

Just three short years later my father passed away and I immediately began to internalize that emotion for many years. In time I finally realized holding on to internalized emotions is one of the reasons why I had many flareups. After giving birth to my first child I had lost weight rapidly and could not keep food down. After reaching a dangerous weight and having bloody stools they did a colonoscopy did a biopsy of my colon and discovered I had Crohn's Disease and Ulcerative Colitis. Polyps were causing me great pain and bloody diarrhea and they were removed at the same time. My physician told me to eat more fiber, cut out all caffeine products and I would need to take medication for the rest of my life as it is not a curable disease. What cut out caffeine products! Oh that was not going to happen for quite a few years.  Wow is was so much information to filter through and swallow as well as very generic information to a 22 yr old mother.

At that time our community only had one gastroenterologist and he was super busy over worked and told me to start a support group and that would help me understand what to do. He told me that there was a need for one because we need to talk about how these flareups affect us and we help each other understand what is going on with our body together.

So that is what I did. I joined a national support group and tried to implement one in my community. It started out great. We gathered in numerous locations every month and even got speakers. I even felt good for the first time in my life. I got pregnant with my second child and lost touch with the group as they quit gathering in time. I was very ill with that pregnancy and then 8 months after my son was born I filed for a divorce. Becoming a single mom was stressful, but not as stressful as remaining in a bad marriage.

Why can't we get the information about our disease and changing our life style when we are diagnosed? When I was told to eat more fiber? They hand you a list of items to eat not how to put them in a meal as I was totally clueless. I was only 22 years old and only knew what to cook from what my mother and grandmother taught me.  They were German rich foods and so I had no idea how to go about changing my cooking habits.  Changing eating habits is not that easy and if you don't have support at home you are not always successful. When you go to other people's homes to eat they don't realize how hurtful and unsupportive it sounds when they say "I was not sure what to make since you have certain foods you can't eat" or " I hope you can have this kind food".

No one explained to me what kind of foods I should be making so in my head I am thinking I guess that means more foods with bran right? WRONG. A misconception by the disease sufferer is that when you aren't having a flareup you can eat however you want. When I felt good I didn't eat right as I just didn't really understand the disease and how it affected my body. This was a time that when the Internet did not exist. My first place for researching resources was at our local library. I found a couple of books on the disease and how they diagnose it and that rest with medication was the only relief from the symptoms to subside.

Living with Crohn's Disease is something that is stressful and if the physician would have shared more information I probably would not have had as many flareups due to not knowing what to eat. Of course, they tell us it does not matter what we eat as it will flare up when it feels like it without any reasons. You eventually figure out that sometimes it flares when you eat something and sometimes it does not. They also try to say antibiotics will help too, but when I have taken them they usually ignite a flareup. Prednisone makes you feel better, but it is the hardest weight to get off!

For Christmas last year I asked Santa for a personal trainer as I was reaching the 200 pound mark and should only weigh 120 pounds. My husband was given the honor of giving that gift to me. I am so thankful for that gift as it has changed my quality of life to a higher level. I would have love it if my physician had recommended I see a personal trainer and nutritionist to prepare a exercise and food plan to a healthier lifestyle. I was taking 4 medications when I began working with a personal trainer. I currently only need to take one medication and I have lost 43 pounds this past year. I have not had a flareup since I began my new healthy lifestyle.

I am currently working on a cookbook and hopefully the Gastroenterologists will offer if to their patients as well as recommend they make an appointment with a personal trainer.

If you are a Crohn's Disease sufferer remember it is not your fault you are sick and you can feel better when you eat the right foods and exercise to release your stress. You may not be flareup free, but you can make a difference in how you feel everyday. Don't stop taking any medications remember to talk to your physician.