- CASE FILE
I have issues with abdominal pain, diarrhea and vomiting after eating certain foods for 37 years, worsening every year since the age of 9.
ABOUT THIS CASE FILE
I started having abdominal pain and diarrhea at the age of 9 from corn and now at the age of 46 I have progressed to too many foods to list completely. At the age of 17, I suddenly was not able to do milk anymore. I had my first colonoscopy at the age of 18 and was told I had Irritable bowel syndrome. The intolerances began to add up including lettuce and seeds. At age of 21 I started having pain in 1 toe after wearing a heel that was too small. I was told I had a stress fracture even though nothing was seen on x-ray and treated with a cast 2 times over 6 weeks. 5 doctors later I learned I had psoriatic arthritis even though all blood work was negative and I did not have psoriasis. I also was diagnosed with a goiter and thyroid disease at age 21, blood work again always normal. Over the years, my arthritis continued to get worse and has spread to many joints, including my TMJ joints, of which I have had to have surgery on each. I had a cervical fracture in 2005, which was close to paralyzing me...I did not even know I had it for 2 weeks because my only symptom was arm pain and I just attributed it to my arthritis. I even have it in my eyes, which when flared, affects how my contacts fit. I have been treated with steroids (which made crohns worse) , methotrexate, Enbrel, Humira, Vioxx, and now Remicade IV every 4 weeks. I had to wear an AFO brace to walk for 15 years until I had an ankle fusion in 2013 which changed my life. At the age of 38, in 2011, I had my 5th colonoscopy and was diagnosed with small bowel crohns disease. Since then my list of inedible foods has grown to all fruits except peaches and ALL vegetables, most seasonings, chocolate, seeds, nuts, butter, peanut butter, milk, hot dogs, fried foods, soy, salami, pop, popcorn, Lays potato chips. Every year I have added a couple more things. Celiac is ruled out. But sometimes they don't make any sense, like no milk but I can eat certain cheeses. And I could eat a cheese one day and be fine and the next day it makes me sick. I can also eat caramel M&M's, but no other kinds. Just doesn't make sense. And my doctors agree. I have had GI doctor and then a second opinion at the Cleveland Clinic. They both says my symptoms are not consistent with Crohns disease and in fact Cleveland Clinic does not believe I have it, but had no suggestions for me on what might be wrong with me. Interestingly my grandmother and mother has many of these same issues and my mothers blood work is always normal as well and she even has Giant Cell arteritis that caused her to go blind and still never has an elevated SED rate. Cleveland Clinic told her she is an anomaly, pertaining to people that always have negative blood work despite symptoms. Every year this affects my life more and more, feeling that I cannot go anywhere or eat anything. I often have to bring some of my own food if we go out to eat. Its embarrassing and makes me disfunctional. But I am a nurse , I continue to work and use some of my experiences to show empathy for my patients. I get through each day my telling myself that this is just Gods plan for me and maybe I have these conditions because someone else would not be able to handle it. But it is exhausting, micro managing my life all the time and whether I think I can leave the house to have fun. I just wish someone would have an answer for me.