When I had surgery to remove my colon (which is called a colectomy) and place an ostomy, I knew exactly what was happening. I knew I would wake up with a loop ileostomy. It was the first step in 2-step j-pouch surgery to treat my ulcerative colitis.
My colon was falling apart, full of inflammation and pseudopolyps (non-cancerous polyps that can occur with IBD). I had a few months to prepare for surgery, including meeting with my surgeon and an enterostomal (ET) nurse. When I woke up with a stoma and an ostomy appliance, it was not a surprise.
All of us who live with chronic illness know understand the difficulties of working in all the appointments and procedures. Even when doing OK, there’s a list to get through every year. Now with being over 40 years old, that list also continues to expand.
Inflammatory bowel disease (IBD) affects more than the digestive system. Crohn’s disease or ulcerative colitis can also affect the eyes, joints, and skin. Jordan Ditty was diagnosed with IBD as a child, though her diagnosis floated between Crohn’s and ulcerative colitis and she had j-pouch surgery due to a colonic perforation. Recently, she had her j-pouch removed and a permanent ileostomy placed. Surgery gave her with a better quality of life but also a new diagnosis of a skin condition related to IBD, called pyoderma gangrenosum. Learn how Jordan remains hopeful through her long journey with IBD and a host of complications.
Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn’s disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn’s in order to share what she’s learned with the IBD community.
Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.
On this episode of the About IBD Podcast, I discuss j-pouches and bust some of the misconceptions that surround them. I also give my firsthand experience as a j-poucher who gave birth twice and let you in on what it’s like for me to have a midline scar from open surgery.