Jill Cascarano: Volunteer, Support Group Leader, Advocate

Growing up, I often experienced what I would call an “upset stomach”. By the age of 17, my symptoms were acting up daily. It was clear something was very wrong. After a year of tests, procedures, and biopsies, I was diagnosed with ulcerative colitis (UC). Over the next 8 years, I experienced some periods of remission on medications, but then my flare-ups became more frequent and progressively worse. Disease remission required longer periods of moderate-to-high doses of prednisone with no end in sight.

All other medications previously used to control the UC no longer worked, and my Gastroenterologist didn’t want to keep me on my current treatment indefinitely. He and a surgeon recommended that I have a proctocolectomy with ileal pouch-anal anastomosis, commonly called the J-Pouch surgical procedure. I agreed because this would cure my colitis and not leave me with a permanent ileostomy.

Not long after the “takedown” of my temporary diverting ileostomy, I began having symptoms mimicking the UC and beyond. Chronic inflammation and ulceration began occurring in my small bowel, I developed two abdominal abscesses with fistula tracks, strictures, and partial blockages. I was officially re-diagnosed with Crohn’s Disease.

Although I was disappointed with this news, I quickly accepted there was no use looking back in the rear view mirror questioning every prior decision. I couldn’t change the past or the new diagnosis. But what I could do was keep moving forward with optimism, courage, determination, a good sense of humor, and taking good care. And I continued to crush my life goals through all the disease ups and downs.

Most recently, I had an exploratory abdominal small bowel surgery because of acute Crohn’s flare ups, chronic partial blockages, three extended hospital stays, and a loss of 45 pounds, all within the last year.

The great news is the surgery was a technical success to fix mechanical problems found in my small bowel. The discouraging news is they determined I now have a serious motility disorder (in addition to Crohn’s). I’m currently on a biologic drug and motility medication, nutritional supplements, and a restrictive nutrient-dense diet. I partner closely with my Gastroenterologist and Nutritionist. As a life-long IBD warrior who has always THRIVED in spite of the disease, I remain optimistic about getting back my quality of life again!

I am a passionate IBD patient advocate and have been a volunteer for the New England Chapter including participating in several fundraising events, being a Power of Two Program Mentor, and a Fete Event Committee Member in 2016. In January of this year, wanting to help more patients and their loved ones, I became a Crohn’s & Colitis Support Group Leader in the Greater Boston Area. I’ve always been grateful for the Foundation. So choosing to volunteer was a “no-brainer”.