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May 26, 2025

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This topic is about a person named Sharon who is facing a significant medical decision after undergoing emergency surgery for diverticulitis. She is considering whether to have the rest of her colon removed, which would result in living with a permanent ileostomy. Here’s a summary of her situation and some advice and insights shared by others:

- Sharon had emergency surgery last year due to a severe diverticulitis attack that led to a perforated colon and a large abscess. She woke up with a colostomy, which was unexpected because more of her colon had to be removed than initially planned. Her stoma is also somewhat retracted.

- She feels responsible for her condition due to past lifestyle choices, such as eating rich foods, not exercising, drinking a lot of coffee, and not cooking. She tried to change her habits and adopted a Keto diet to lose weight in hopes of a reversal surgery.

- Two months ago, Sharon collapsed and spent eight days in the hospital on IV fluids. She learned she has multiple diverticular pouches above the stoma, near her left kidney. Her surgeon now recommends removing the rest of her large intestine, leaving only the small bowel, which would mean a permanent ileostomy. The decision is hers, but the surgeon predicts she might need further surgery in the future.

- Since being discharged, Sharon feels depressed, dislikes her appearance, and has returned to her old habits. She is experiencing wide sodium swings and is confused about an upcoming colonoscopy. She is seeking honest advice on what to do.

- Sharon acknowledges her fear of the unknown and plans to seek a second opinion. She explains that the pouches near her kidney are additional diverticula that have moved higher up the bowel. She realizes she needs to ask more questions.

- She reports having one good day where she walked with her dog, tidied the yard, and felt "human for the first time in months." She has a personal motto: "If I want to be, it’s up to me," but admits it’s challenging to live by.

Advice and insights shared by others include:

1. Surgical Decision
- Consider a total colectomy and a permanent ileostomy, as some people report being happier and healthier after making this decision.
- Obtain at least one or two additional qualified surgical opinions before making a decision.

2. Mental & Emotional Health
- Depression is common within a year of stoma surgery; talk openly with family, friends, professionals, or forums.
- Stop self-blame; practice self-compassion and, if possible, work with a mental-health therapist.
- Remember you are guiding your own healthcare, not merely “allowing” doctors to act.

3. Lifestyle & Motivation
- Start with very small, consistent exercise, like 5-minute walks, gradually increasing; walk with a companion or dog.
- Focus on attitude: many long-term ileostomates credit a positive outlook for a good quality of life.
- Love yourself enough to pursue the best version of you; find daily enjoyment despite tough decisions.

4. Diet & Hydration
- Stay well-hydrated, which is critical with an ileostomy.
- Aim for balanced eating rather than extreme diets; most long-term ileostomates eat almost everything with few exceptions.

5. Practical Resources
- All pouching-system manufacturers have stoma nurses and helplines; calling them can provide professional advice, troubleshooting, and emotional support.
See full discusison
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