Była pielęgniarka z chorobą Leśniowskiego-Crohna i stomią

A former nurse from Philadelphia has become a beacon of inspiration by sharing her journey of living with Crohn's Disease and a permanent ileostomy. 31-year-old Maggie Tretton of Doylestown, who has over 213K subscribers on YouTube, has navigated the challenges of Crohn's disease since she was a child. "The earliest sign was falling off the growth charts," she recalled. "Around age seven or eight, I began plateauing in growth, stopped eating, and experienced severe abdominal pain accompanied by alternating episodes of diarrhoea and constipation. My paediatrician thought I was just a picky eater." This prolonged period of misdiagnosis significantly impacted her childhood. "I felt like I was going crazy," she recounted. "I kept trying to eat, but food made me sick. Even after my diagnosis, some doctors believed my symptoms were psychosomatic, thinking I had an eating disorder rather than recognising the severity of my disease." By the time Maggie was finally diagnosed with Crohn's disease at the age of 11, she weighed 55 lbs (24 kgs). Despite treatment, she only reached 65 lbs (29 kgs) by age 14. "The reality of Crohn's disease was hard to grasp," she noted. "I didn't understand what the diagnosis meant. I relied heavily on my parents' reactions, and I remember them being devastated. My dad knew someone with Crohn's who needed a colectomy, and my mum, being a nurse, knew the implications." Maggie's transition into content creation on YouTube began in January 2010, three months after her ileostomy surgery at 16. "I created my first video because I felt isolated. I knew other kids at school with Inflammatory Bowel Disease, but none seemed as severe as mine. I was the only one who had had surgery, let alone had an ostomy," she recounted. "I quickly learned that managing a stoma is very different from caring for incisions that eventually heal. You need specific medical supplies. There are also potential lifestyle changes to consider. Looking back, some key insights could have eased my transition to ostomy life, which I share on my YouTube. During her early ostomy days, Maggie's experiences with nurses inspired her to pursue a career as a bedside nurse. "While I was impressed by the nurses' skills in managing IVs and central lines, I noticed a gap in their ostomy care knowledge," Maggie admitted. "For instance, a nurse used tube paste to fix my leaking ostomy instead of changing the appliance, and another time, a nurse forgot to clip the end shut, causing a mess. These experiences highlighted the need for better training in ostomy care. Living with a stoma myself, I realised I could offer invaluable real-world insights as a nurse, improving patient care for others with similar conditions." However, I was a full-time bedside nurse starting in 2016, but as I got sicker, I cut my time down in the hospital. In December 2019, I had my proctocolectomy (making my stoma officially permanent) and had to leave bedside nursing, moving on to telehealth nursing. "During my recovery, I received an offer to do telehealth nursing with a company that specialised in ostomies. This opportunity was perfect for me, allowing me to work remotely and providing the flexibility to create more videos," she said. "After a couple of years, the company went out of business, so I decided to focus solely on my YouTube channel." Today, Maggie is deeply involved in healthcare and patient advocacy. "My biggest hope is that patients are believed about their symptoms and that healthcare professionals are treated respectfully. It should be a team effort." She is also confident about advancements in Crohn's disease treatment and management. "After recently attending a report on the Crohn's Colitis Congress in Las Vegas, I was thrilled to see the research being done on patients who have undergone surgery," she gushed. "Surgery is now considered another form of treatment rather than just a last resort. Given that surgery permanently changes your body, I'm excited that these aspects are being studied. For instance, diet needs for people living with a stoma or after J-pouch surgery often require patients to 'figure it out' on their own. I'm glad to see research providing more guidance and direction on managing these changes effectively." For those struggling with digestive issues and lacking a diagnosis, Maggie advises seeking multiple opinions. "Medical professionals aren't perfect. Sometimes, it takes a few doctors to find the right one," she stated. "If you've been diagnosed with Crohn's disease, ask for a referral to a wound, ostomy, and continence nurse (WOCN) before leaving the hospital. These specialists are invaluable for managing stomas and addressing issues like skin breakdown or flange leaks. Not all hospitals have a WOCN, so inquire about stoma clinics as well. Adjusting to an ostomy takes time, but don't let it overshadow the improvements in your quality of life. Learning about your stoma and available products can help you adapt. Despite my initial fears, the health benefits have made it worth it." Maggie and her husband of three years (they have been together for 12 years), Zak, hope to start a family soon but remain 'cautiously optimistic'. "After my recent experiences with proctocolectomy surgery and ectopic pregnancy, I have come to understand the profound impact my gastrointestinal disease has had on my reproductive health and pelvic floor. Despite these challenges, Zach and I are hopeful with the right medical support and our shared determination, we can start the family we've always dreamed of," she concluded. Featuring: Maggie Tretton When: 20 Jun 2024 Credit: @maggietretton/Cover Images **EDITORIAL USE ONLY. MATERIALS ONLY TO BE USED IN CONJUNCTION WITH EDITORIAL STORY. 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