This topic is about someone who has been living with Crohn’s disease for 25 years and has had an ileostomy for the past 4 years. Initially, things were going well after the surgery, but recently, they have been experiencing some troubling symptoms. Here's a breakdown of their situation and some advice and insights that might be helpful:

- For the first three years after surgery, they were symptom-free. However, in the past year, they have started experiencing frequent mucus discharge, which has progressed to bloody rectal output, incontinence, rectal and abdominal pain, nausea, and vomiting.
- A recent colonoscopy revealed severe inflammation and a stricture in the remaining colon.
- They have tried various medications over the years, including Remicade, Imuran, Humira, Cimzia, Entyvio, Stelara, Rinvoq, and have been on a constant stream of prednisone.
- They are concerned that the disease is as aggressive as it was before surgery and are considering the possibility of a colectomy, but worry that Crohn’s could affect other areas.

Here are some pieces of advice and insights shared by others:

1. An early permanent colectomy might be the most effective option if the colon is a constant source of inflammation, bleeding, and pain. Delaying this could prolong suffering.
2. If considering a colectomy, discuss with your doctor whether to have a complete proctocolectomy (removal of the colon and rectum) or to leave a rectal stump. Some have experienced recurrence in the rectum when it was left in place.
3. While surgery will not cure Crohn’s, it can significantly improve quality of life if the colon is the main issue. However, be aware that the disease can return in other areas, as one person experienced it in the small intestine a year after colectomy.
4. Be vigilant for adverse reactions to Imuran/azathioprine, as severe side effects have been reported by some.
5. After trying medications like Remicade, Humira, Cimzia, Entyvio, Stelara, and Rinvoq, consider newer biologics such as Skyrizi if you haven’t yet or if your insurance covers it.
6. Keep both your gastroenterologist and colorectal surgeon informed and involved in your care. Their combined expertise is crucial for deciding the timing and extent of surgery and determining if reconnection was ever intended.