Forty Years and Counting!

I was diagnosed with Crohn’s Disease in 1977 at the age of 18, in my third week as a college freshman. Having been a terribly colicky infant (a fact my older brother still reminds me of to this day) it now feels as though I was destined for some sort of bowel issues. In my late elementary school years I suffered from terrible ongoing, stomach issues, diarrhea and cramping and pain. My mom, who had had her share of bowel issues in her early twenties, when they found a noncancerous tumor on the outside of her intestines, which was promptly resected, knew that I wasn’t lying or being dramatic. Our family doctor was quick to dismiss my pains telling my mom that I was obviously an anxious child. My mom, to her enormous credit, kept telling him that I was not overly anxious, so he had me taking copious amounts of Pepto Bismol and chewable gas tabs. This was in the late 1960’s and diseases like Crohn’s were so unknown and easily overlooked until the patient presented with horribly intense levels of active disease with obvious lesions in the intestinal tract. Interestingly, my mom had no other issues with her digestive tract until she was pregnant with me… so that is just an interesting aside to the ever-present question about the genetics/heredity and origins of IBD, and my grandfather’s family were Ashkenazi Jews who escaped persecution in Hungary, yet another link to my eventual diagnosis of Crohn’s Disease.

Despite my prior stomach issues, this diagnosis was really my first foray into serious illness and, although I knew I was seriously ill, I thankfully had no idea what having Crohn’s Disease could mean, long-term, or how it might manifest in my future. I do think, to some degree, that my naiveté was a good thing because it never left me feeling as though I wasn’t able to do what I wanted to do; I just realized that I might have to do it differently.

My living with Crohn’s my entire adult life has changed me. I can’t possibly be the same person I would have been if I had never been touched by such a dramatic disease. Oftentimes, people who live without major medical issues are totally out of touch with what being really sick means, both physically and emotionally, and I know that I am more empathic and supportive of the underdog because I know what it feels like to always be fighting to live a life that so many others take for granted.

I went through a five year college double major in four and a half years (not too bad) and did have to take a semester off when I ended up in the hospital for almost a month on Total Parenteral Nutrition (TPN). It wasn’t my favorite time, I was both bored and sick, but the rest that it gave my bowels saved my life. I resumed college the next semester taking 21 credits (much to the chagrin of my parents and my advisor) but I had to keep going and not let this minor setback keep me from my achieving my goal(s). After college, where I earned a BS in a dual-major, I worked and went onto graduate school, continued working full-time, and then earned a Master’s Degree and, eventually, much later on in my adult life, a Doctorate, all while battling this full-time disease and surviving many hospitalizations, bowel obstructions, NG tubes, ileostomy surgery and the additional surgeries which followed the original ostomy surgery.

One thing that became readily apparent to me was that having a profession and a chronic disease is like having two, full-time, jobs; One job that you can retire from and one that stays with you, forever. I realized that in 40 years, despite vacations from work, holidays with family and friends, and a first marriage that ended in divorce, my chronic disease never really took any time off. Like an appendage, Crohn’s became such a part of who I am and how I function (or don’t function when I am feeling poorly) that I never realized its constant and ever-active presence! Maybe I did realize, but I knew that no matter how debilitating the disease was, what really mattered was my ability to keep moving and to remain both resilient and unyielding to whatever my chronic disease had in store for me.

So, in the last 40 years, even when the disease has not been “active” inside of what is left of my small intestine, the fatigue, joint pain, muscle aches, headaches and/or side effects from the myriad medications I have tried to treat the debilitating secondary and tertiary symptoms are my ever-present reminders of the battles I have fought and continue to work hard to win. For people who are newly diagnosed or struggling with active disease, please know that it can change for the good, and that our emotional strength and our ability to remain positive is just as important as our physical ability to withstand what we have to face in dealing with the disease.

Now, as a retired educational professional, I also take time to make peace with, and experience, the co-existence with my other remaining job, that of survivor of long-term, chronic disease. I continue to acknowledge its presence in my life, as well as appreciate what I can’t change. But, most of all, I consciously take the time to appreciate that I continue to have the ability to fight such an insidious disease. I also continue to work and volunteer in my professional field so that I can give back to the profession that supported me so well for so many years, because I am still a viable woman with so much to give and a desire to help others.

Jeanne