At the age of 44, I have lived the life of a much older person. My story began at age 18, when you begin your adult life...in my case, my IBD life. Some of you may have similar experiences and this may be a safe space to share.
A diagnosis of Ulcerative Colitis in 1996, caused a cycle of flare and remission for four years. During that time I finished high school, completed my college program, worked full time, moved into my own place for the first time, met my future husband, and attempted to live life without my diagnosis. All that changed in 2000, my health deteriorated and a total colectomy and pouch were created over the course of 3 surgeries and 4 admissions. Doctors back then were hopeful that I would be able to have surgery to reverse the pouch and function almost "normally". My body rejected this idea and I went through about 6 more surgeries to repair fistulas. Ultimately leading to a life of a pouch for the next 18 years. Those years were somewhat uneventful, a few more surgeries, but I was mostly by definition, "healthy" as the colon was completely removed.
Made some life changes that were healthy, such as divorce, moved to a different city, and settled on another surgery (the BCIR in 2018). Most of the people living with IBD have not had this surgery and so I become a bit of a unicorn to anyone working with me to get an X-ray, MRI, and CT scan. It's an explanation that only leads to more questions. I hear, "So you have an ostomy?" and "Do you have a bag?" and "How do you go to the bathroom?" and "Why do you need those supplies?" After the surgery, I developed pouchitis and changed my eating habits. This cleared the reoccurring inflammation after a couple months but didn't help with the next blow to my life. My dad committed suicide and that threw my body into a trauma wreck. I developed another diagnosis, Inflammatory Arthritis that was severe. Being in full body pain for about 3 months until I could find the right medication to provide some relief, Humira.
Now I am working with two diagnoses that cause inflammation. In addition, I was diagnosis with anemia and depression. Over the next 3 years I was in pain due to a body that was attacking itself. I developed a belly abscess in January 2020 and admitted for 3 days. In the surgery follow up appts. I was pushed and poked and developed abdominal pain that wouldn't go away that was severe. This pain carried with me until September 2021 when a new health team diagnosed me with Crohn's. Are you keeping count, Ulcerative Colitis, Crohn's, Depression, Arthritis, and Anemia. In order to treatment the Crohn's I had to stop Humira, start Remicade and prednisone. I have finished my loading dose of Remicade and am now being switched to Inflectra (insurance forcing the change). I am taking Methotrexate via injection due to the pills causing nausea and was able to stop the Prednisone.
At present, my belly is uncomfortable most days, on a prednisone taper, and face swelling.