This topic is about someone who had an ileostomy a year ago due to a severe ulcerative colitis relapse. Since the surgery, they have been experiencing several complications and are seeking advice from others who might have had similar experiences. Here are some insights and suggestions shared by others:

1. The person has been dealing with a visible bulge under the stoma, which has been confirmed as a parastomal hernia. They also experience persistent bloody and odorous rectal mucus, severe nausea, loss of appetite, changing taste buds, repeated infections, hospitalizations, significant weight loss, and dehydration.

2. The original surgical team dismissed these complaints, and while antibiotics provided temporary relief, infections kept recurring. The surgeon now considers the hernia unsafe and suggests it may need repair. The person is transferring their care to a new hospital.

3. They are worried about their current condition, feeling seriously ill, and the delay in returning to work. They are asking if other ileostomates have had similar experiences and what helped them.

4. The person lives in Columbus, OH, and finds it difficult to travel to the Cleveland Clinic due to caregiving responsibilities. A review of their medical records revealed some uncommunicated findings, including a suggested but unperformed endoscopy, potential anal cancer, and Crohn’s disease in the small intestine.

5. They still have their rectum, and the surgeon is considering a proctectomy. There have been five post-op hospitalizations for nausea and dehydration that the surgeon was unaware of.

6. The person has a history of ulcerative colitis and ulcerative pancolitis since 1984, with a short remission on Entyvio in 2019, but experienced severe side effects. They are deaf since birth and use a Bluetooth aid and a hearing service dog. They have upcoming appointments at a new hospital in the Lima region.

Advice and insights from others include:

- Specialist Care: Many suggest evaluation by the Cleveland Clinic's colorectal/GI team, possibly at a satellite office in Lodi, OH, to reduce travel. An in-person consultation is recommended to direct further testing locally. A caregiver named Dorothy Doherty, if still practicing, is recommended.

- Peer Resources: An Instagram account called "Double Baggin It" in Columbus responds to messages and shares local provider information and support.

- Retained Rectum Management: Bloody and odorous discharge is often due to inflammation in the remaining rectum. Standard treatment includes mesalamine suppositories and possibly cortisone or steroid suppositories or foam for temporary relief. There is a long-term concern about cancer risk in a non-functioning, chronically inflamed rectum, and a proctectomy is frequently advised.

- Recognizing Infection: Green rectal mucus can indicate infection, and it's advised to collect a sample, request a lab culture, blood work, and possibly a scope. Red (bloody) discharge warrants prompt evaluation.

- Nutrition & Hydration: Altered taste and appetite are common post-surgery, and food-aversion therapy can help. The body may crave needed electrolytes, and high-sodium foods or lemon/lime-flavored drinks are cited as helpful. Carrying "salt kits" like Cape Cod kettle chips can help treat dizziness from low sodium.

- Medication Experiences: Long-term prednisone use has controlled IBD for some but carries risks. Biologics like Entyvio helped with remission but caused severe side effects in others, so close monitoring is essential.

- Emotional Support: Feeling isolated is common, and connecting with competent care teams and fellow ostomates can restore confidence and hope.