This topic is about a young person who suddenly developed severe ulcerative colitis and had to undergo emergency surgery for an ileostomy at the age of 18. The experience was overwhelming, and now they are trying to cope with the aftermath, both physically and emotionally. Here are some insights and advice that might be helpful:
- You’re not alone: It's normal to feel isolated and to grieve the loss of your health. Many people have gone through similar experiences and needed time to adjust. Consider joining local ostomy or IBD support groups or online communities. Writing, blogging, or journaling can also be therapeutic and help you connect with others.
- Seek professional help: Continue seeing a psychologist, especially one experienced in dealing with chronic illness trauma or PTSD. You can also ask hospitals or IBD charities about support meetings for young adults.
- Long-term perspectives: Many people with ostomies have returned to a "pretty normal" life, including careers, sports, travel, relationships, and having children. Surgery can provide freedom from constant pain and other health issues.
- Physical recovery and fitness: Expect to feel weak for a while, but gradually reintroduce exercise like walking, swimming, cycling, or light weights. If you want to resume martial arts, do so cautiously and get clearance from your surgeon or ostomy nurse. Abdominal support belts can help with potential issues like short-bowel syndrome or parastomal hernias.
- Ostomy management tips: Bag wear time varies, with many people changing every 3-4 days. If you experience leaks, try different systems. Severe skin irritation might require alternatives like the Barnett Continent Intestinal Reservoir (BCIR).
- Considering a J-pouch: Weigh the benefits against possible complications like pouchitis or incontinence. Consult multiple colorectal surgeons and experienced stoma nurses. Remember, it's reversible if needed.
- Alternative options: The BCIR is an option for those with severe skin issues or who dislike external pouches. Some drugs mentioned include Hydrocortisone, Infliximab, Prednisone, and Etrilizumab (trial).
- Day-to-day coping: Focus on taking things one day at a time. Staying busy with studies, friends, and family can help reduce overthinking. Educate your close friends and partners; most will be supportive once they understand. Remember the lesson of the "emu and kangaroo" emblem: keep moving forward, as setbacks are temporary.
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