This topic is about managing life after a subtotal colectomy and new ileostomy, especially when dealing with a Crohn’s disease diagnosis and high ostomy output. The person sharing their experience had surgery due to a severe condition called toxic megacolon and hoped it would end their need for certain medications. However, they are now facing fatigue, nausea, and high ostomy output, with a new diagnosis of Crohn’s disease in the small intestine. They are seeking advice from others who have faced similar challenges.
Here are some helpful insights and advice shared by others:
1. Crohn’s disease can appear in the small intestine even after a colectomy. Some people have experienced Crohn’s years after surgeries intended to cure ulcerative colitis.
2. If one biologic treatment fails, others have tried different options:
- Remicade (infliximab) administered intravenously every 8 weeks.
- Humira (adalimumab), a self-injectable option, has worked for some when Remicade did not.
- Skyrizi (risankizumab) is being used by someone after Humira and Enbrel did not work.
- Stelara (ustekinumab) has been effective for another person after stopping Remicade and Humira.
- Keep in mind that the effectiveness of a biologic may decrease if it is stopped and then restarted.
3. Long-term use of steroids is generally avoided, but short courses may be used if absolutely necessary.
4. To manage high-output or loose effluent:
- Expect a faster transit time (3-4 hours from eating to stoma) until your body adjusts.
- Eat foods that thicken output, like white bread, pasta, white rice, mashed potatoes, crackers, pretzels, and marshmallows.
- Start with low-fiber foods and gradually introduce limited soluble fiber to help firm up stool.
- Chew food thoroughly to prevent blockages.
- Stay hydrated with water and electrolytes using drinks like Gatorade, Powerade, Pedialyte, or similar solutions.
5. For managing heavy output or a prolapsed stoma:
- Consider high-output pouch systems, such as those from ConvaTec, which include a "High Output Bag" and a new wafer designed for prolapsed stomas.
6. General coping strategies:
- Be patient as your output stabilizes and introduce new foods gradually.
- Keep a regular schedule for meals and sleep to help regulate your digestive rhythm.
- Build a strong support network, which can include online forums.
- Understand that everyone’s response is different, so continual self-monitoring is important.
See full discusison