I was first diagnosed with Crohn’s disease when I was 17. Crohn’s disease is a chronic inflammatory bowel disease of the intestines, especially the colon and ileum. It can lead to severe diarrhea, fatigue, weight loss, and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive track in different people.
For the longest time, it was in remission, and I had no flare-ups. I had even forgotten I had it. When I was in college, at about 20 years old, I had gone to El Paso to visit some people. While there, I became very ill. I had to suffer through the pain until we finally made it back home. I still wasn’t sure what was going on. I just knew I was sick with a stomach ache. It would pass if I took antacid, but then I began losing weight. My doctors were doing everything they could to figure out what was causing all of these problems but were having no success. The stress of not knowing what was wrong, along with the active Crohn’s flare-up, caused me to be allergic to everything. Everything would cause nausea–the smell of food cooking, the smell of perfume, drinking water, even my surroundings. I was basically allergic to myself.
I was hospitalized for over 150 days while they tried to figure out what was wrong. I was there from April to September the first time. I’ve been to a few different hospitals: Baylor University in Dallas, TX, The Mayo Clinic in Minnesota, and John Sealy in Galveston, TX. I guess I was just hoping that one of these renowned hospitals would have a cure for this disease and that they would find out why my body was attacking and living off of itself.
The Crohn’s was taking all of the nutrients from my body and living off of my fat cells. Once, I was hospitalized for 75 days and during that time, lost 105 pounds. By the time they stopped the downward spiral, I weighed 99 pounds. I had an extreme case. I lost my father while I was in the hospital. That was the toughest part of those 75 days. That was the only time I ever questioned God and wanted to give up. It was an emotional drain with the loss of my dad, and it prolonged my hospital stay. The nurses become your extended family, but when you spend your holidays with them, it can drag you down emotionally as well.
My Crohn’s is located where the large intestine and small intestine connect and also in the lower part of the throat. I have had five colon surgeries. I have been fed through a central line in my chest. I was placed on steroids, which eventually attacked my joints due to prolonged steroid use. This is called AVN (Avascular Necrosis). It attacks the blood supply to the joints and basically kills that area of the joint. It eventually causes the joint to collapse due to bone fatigue and every day wear and tear. It has attacked my shoulders, knees, ankles, jaw, hands, and now my back. Some people are allergic to sulphur-based medications, and that’s what caused mine. All of my joints have been replaced several times. My bones are so fragile now. My joint surgeries started in 1989. I have to go back every 2 years, maybe 4, if I’m lucky. My doctors have said that by the time I am 52, I will be totally dependent on a wheelchair.
After my diagnosis, I returned to college. I received my license to be a Medication Aide and went to work with the state MHMR [Mental Health Mental Retardation] in private group homes. I also became a history researcher, professional volunteer, helped people get their SSI and social security, and have acted as a victim’s advocate for cases being argued before administrative judges. I have worked as a clerical tech and PBX operator and have spent the last five years with the Texas Department of Human Services. I travel when time permits. Stress, different types of food, and seasonal changes are all factors that contribute to my flare-ups. My diet is pretty normal but somewhat bland. I still cheat sometimes. I can live with a taco from Little Mexico and food from the Hamburger Bar (both local favorites).
I want to give some recognition to my mother. She had to be so strong for me after my father died–having to deal with her husband’s death and watching her child slowly dying and not be able to do anything. She is a strong woman, and she is very important to me. My illness drew my mom, my sisters, and I closer together. There had been a lot of hurt feelings before my illness, and it gave us a chance to talk and clear things up. You never know when you are possibly facing death or if you will wake up after surgery. I wanted every “I” dotted and every “T” crossed to make sure everything was okay with everyone in case God made that call and I was to die. My mother took the lead on that. She held us all together.
My mother has passed away now. She went to be with the Lord in 2005. Her doctor had told us not to make any long-term plans with her because she wouldn’t make it that long. When we were growing up she would always say, “Children, you all are not going to have a momma forever. When you are prepared for that, it makes saying goodbye a little easier.” We got to say everything we needed to say to one another. I slept in a chair beside her hospital bed most nights. Being prepared WAS easier. It could have sent me into another flare up, but it didn’t. That reaffirmed my faith, and I resolved never to give up.
As for now, I live life one day at a time, letting God be in control, and never, ever, ever giving up. I just keep going and keep focused on having a positive attitude. I’m just trying to miss Hell and get to Heaven without having to sweet-talk Saint Peter to get in. I have a wonderful, beautiful, wise-beyond-his-years, intelligent great-nephew, who makes my life worth living and claims 100% of my energy.
If you are suffering from Crohn’s, keep your faith. It will see you through anything that comes your way.
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