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Jul 19, 2022

Living with Invisible Pain: My 20-Year Battle with Ulcerative Colitis

This topic is about living with the challenges of ulcerative colitis, a condition that can cause severe pain and other symptoms, and the emotional journey after undergoing surgery to manage it. The person sharing their story has dealt with this illness since childhood and recently had a colectomy, which has brought both relief and new challenges. Here are some helpful insights and advice for anyone going through a similar experience:

- It's completely normal to feel angry after enduring years of invisible suffering. While it's okay to use this anger for short-term relief, try to work towards letting it go so it doesn't keep you stuck in the past.

- Having a stoma can be life-saving and may lead to a future with much less pain. Many people find that it opens up new possibilities for them.

- Everyone's healing journey is unique. Some people return to work within weeks, while others may take longer due to different circumstances. Avoid comparing your timeline to others.

- Focus on taking recovery one day at a time. Concentrate on what you can control now and being present for your child.

- Schedule an appointment with an ostomy or WOC nurse as soon as you can. They can provide emotional support and help ensure your appliance fits well.

- You can expect to see noticeable improvements within weeks and significant changes within a month. Most people gradually return to their previous activities.

- Expressing your emotions through writing, poetry, or talking with others who have ostomies can be very therapeutic.

- If anger continues, remember that it's a common stage for those with long-term inflammatory bowel disease (IBD), Crohn’s, or ulcerative colitis. Many people eventually see their experience as a valuable lesson in insight and resilience.

- New biologic medications, like Remicade (infliximab), are improving outcomes for IBD, offering hope for current and future generations.

- There are practical benefits to having an ostomy: you no longer need to urgently search for toilets and can empty your pouch almost anywhere.

- Friends and family might not fully understand the healing process. Educate them gently and set boundaries regarding your need for rest and activity.

- Look for small joys each day, whether in nature, hobbies, or supportive communities. Recovery and adaptation take time but are definitely possible.
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