A True Story by Jeffrey A. Jett
From what I gathered from my Mom, as an infant it was difficult to find a formula that I could tolerate. After months of trial and error, a formula was found and introduced without the dairy component of lactose. This new concoction seemed to have been the cure for my ailment, for the time being. Seemingly over the infantile distress , the next 13 years I was able to eat without dietary restriction.
It was 1967 and the tomatoes were particularly delicious, abundant and cheap in Maryland that year and my Mom took advantage of this fine fruit and incorporated it in all our meals.
At some point towards the close of that summer I started with lower abdominal stress that progressively worsened. It wasn’t until I noticed blood after my movements that I became scared and told my folks what was happening. I was relieved to hear my Dad say that I may be seeing undigested tomato skins and to let him know if this persists. Experientially tomatoes were banned from my diet, but to no avail. The bleeding continued and I was taken to Dr. Arthur E. Cocco, who was the leading gastroenterologist in the area at the time.
It was then that UC was diagnosed in my life. I was quite young, being fourteen and just entering Freshman year in high school when I landed in the hospital. I was so sick and losing weight fast. I was very close to needing a transfusion because of the blood loss I was experiencing. After a few days stay at St. Joseph’s in Baltimore city, Dr. Cocco and the doctors were still stumped as to the cause of my illness. It was a fateful evening when the Candy Striper brought the beverage cart to my room. “Can I have a root beer instead of a vanilla milk shake?”, I asked her. “You wouldn’t rather have a milk shake like yesterday?”, she responded. I explained that although I love the milk shakes, it seemed like I would get violently ill after I drank them. The next day, after the usual barrage of tests I was wheeled back to my room. There were hand written signs plastered all over the headboard of my bed. In bold red letters they read: NO DAIRY! After another day or so the bleeding stopped and I started to feel better in the following days.
What happened to me after a few weeks was dramatic. Dr. Coco prescribed prednisone (steroid) and azulfidine, a sulfa drug that was developed in the 50’s for bacterial infections And OH! the side effects! Being so thin, “fat patches” formed in my cheeks and in all my joints to give me the appearance of gaining an incredible amount of weight over a comparatively short period of time. These fluid sacs were harmless except that I remember having a hell of a time in gym class. I could barely run and fatigue set in quickly. It felt like I was an obese 75 year old man. Larry Gross (Mr. Gross) the residing Phys Ed instructor was compassionate about my condition and helped me as much as he could. My classmates kindly understood my transformation and subdued their need to “make fun” to nicknaming me “Hamster”, “Hammy” for short. Not so bad.
Remission finally came and brought with it the freedom of the urgent bathroom visits and the almost intolerably painful sigmoidoscopies. My body slimmed as the fluid released and I became my old active self again. I was looking forward to a much healthier high school term. As long as I obeyed my dietary restrictions, all was well. Not only was this a life style type of change in my life but in my Mom’s life as well. Just like during my infancy she would have to read ingredients and research everything she bought to accommodate my diet without any reservation. Thanks Mom! Again. I continued to stay well.
My remission continued for decades before it reared its ugly head. It was my fault as I started to slack on my dairy intolerance. I stopped looking at labels and ingredients and would have an occasional “treat”. It was another 2 years before the dairy abuse incrementally took its toll. I had forgotten how horrible and threatening this disease can be. My family doctor recommended Dr. Jerold Canakis, the best in the field of gastroenterology in my area now of Ocean City. My first visit was relatively uneventful as he routinely scheduled a colonoscopy. The results were overwhelming as a forest of pseudo polyps was discovered. 25 biopsies were taken to the pathology team. The results came back abnormal and I was told that there was a chance for surgery. Shock ran through my body like a lightning bolt. I imagined the worst. Dr. Canakis summoned a second opinion from his colleague at the University of Maryland in Baltimore. Waiting for news, I probably read everything I could get my hands on about UC. I joined support groups for those who have UC with colostomies, trying to learn everything I could and what to expect before during and after surgery. Talking to these folks, I found strength and fortitude in their approach and outlook to their lives going forward after surgery. Their kindness and compassion was comforting to say the least. I shed many tears during this harrowing time with them.
It was just a few days before Christmas when I reluctantly took the call from Dr. Mark Flazar at the University. Apparently the pathology team here had “over read” the biopsies and although he could see the reason for the mistake, assured me that no surgery would have to be performed. “Thank God and Merry Christmas!”, I screamed at the top of my voice, deafening Dr. Flazar who responded with,” Yes , Jeff. Merry Christmas”. He continued to explain that what the first team saw was actually scar tissue from the 43 year old condition. I cried tears of joy as his voice trailed off and I felt the million pound weight lift from my shoulders.
Dr Canakis had the UC into remission within 6 months with the treatment of Lialda, an anti-inflammatory drug expressly used for bowel disease. I remain in his care and am recovering with this treatment along with yearly surveillance of high definition colonoscopies and a very strict diet. I am still reeling from a flare up I had a few weeks ago. I found some hidden dairy ingredient in a lactose free product that we were consuming. Still very sensitive apparently.
I’ve learned that this is a serious disease and I respect it as a life threatening or life changing condition and will never under estimate or take it lightly again. This is only my story. The fact that knowing an allergy to dairy products sparked this disease in me leaves me very sympathetic to those that are suffering and living in discomfort without knowing how or why this has happened to them. But I also know through the dialog I had with the support groups that there is hope in recovery to live a very happy life… I still cry as I read this.
© March 2015 Jeffrey A. Jett
13 Nov 2016