This topic is about a person in the UK who is experiencing discomfort and seeking advice after having an emergency total colectomy and end-ileostomy due to severe ulcerative colitis. They are dealing with issues like pain, pulling, and burning around their stoma and an adjacent mucus fistula. Here are some insights and advice shared by others:

- The stoma is about 2 inches long and 40 mm in diameter, with several granulomas at its base. A small mucus fistula is located right next to the stoma, requiring the wafer to be cut to include both openings to prevent mucus from undermining the seal.

- The person experiences symptoms like burning and pulling only when upright, but there are no leaks. They suspect a peristomal hernia due to a lump behind the stoma.

- Physical activity is limited, and they are concerned about whether their situation is normal. They are looking for experiences on how long it takes for pouching to become comfortable, managing pain from the fistula-wafer interaction, granulomas, and possible hernia, and living with a large stoma.

- Pain initially eased when a nurse notched the wafer for the fistula, but discomfort has returned. Granulomas are to be treated with silver nitrate at the next clinic visit.

- The body is still passing mucus per rectum, and the fistula is permanent. They are considering barrier rings and have ordered samples.

- The appliance is currently changed twice daily because the wafer degrades within 24 hours, providing partial relief. A soft pouch cover helps cushion the drainage clip and reduce rubbing.

- A follow-up surgical review is scheduled for February. The colon has been removed, but the rectum and anus are retained. There is no interest in a J-pouch or reversal, and they want to avoid further abdominal surgery if possible.

Advice and insights include:

1. Pain is not normal, so request a surgical review. Consider asking about stoma revision to reduce size or relocate the fistula, and get imaging to confirm or rule out a peristomal hernia.

2. For fistula management, pack the fistula opening with gauze to stop seepage before applying the wafer. Some surgeons create a mucus fistula to vent residual bowel, which can usually be closed later if troublesome.

3. To improve the barrier, use moldable barrier rings or cut the wafer with extra clearance, then fill the gap with the ring to stop rubbing and stinging. Lie flat when applying the appliance and ensure the aperture matches the stoma shape exactly. Experiment with different inner rubber rings and convexity options.

4. For granuloma care, silver-nitrate cauterization is standard, and repeat treatments are often needed. A thin dab of Ostomy Powder plus skin-prep can reduce irritation between treatments.

5. For wear-time and comfort, frequent changes are fine while healing, and wear time can be extended gradually. Keep the waistband above the appliance to prevent pressure, and use a fabric pouch cover or ostomy belt to stop the plastic clasp from digging in.

6. Many people report starting to feel "normal" after about 3 months, with full adjustment taking up to a year. Patience and incremental improvements are key.

7. Consult stoma nurses early and often, as they can trial different systems and obtain product samples. The IA (Ileostomy & Internal Pouch Association) offers UK-based literature, peer support, and supplier information. Community hospitals like U.C.L.H. (London) and Finchley Memorial Hospital provide excellent outpatient stoma care.

8. For long-term options, if planning to keep a permanent ileostomy, ask about "Barbie butt" (proctectomy) to eliminate rectal mucus and fistula output. Ensure any future surgery addresses hernia repair and fistula closure simultaneously to minimize operations.