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Aug 20, 2022

Ileostomy bulging and poking out severely. Need urgent help and treatment?

This topic is about someone who is experiencing severe issues with their ileostomy, which is a type of surgery that creates an opening in the abdomen to allow waste to exit the body. The person is facing problems like bulging, odor, and pain, and is urgently seeking help. Here’s a breakdown of the situation and some advice:

- The person had their ileostomy surgery on June 7, 2022, and is now 11 weeks post-surgery.
- Initially, the stoma was small and neat, but on August 10, a mild prolapse was confirmed by the surgeon. This was attributed to weak tissue due to hypermobile Ehlers-Danlos syndrome, with a reversal planned in three months.
- On the evening of August 18, there was a dramatic change: the lower lip of the stoma became swollen and protruding, and the upper lip also enlarged.
- There was a foul odor that filled the bathroom, which was unusual for this stoma.
- Multiple bleeding points and stinging pain were present.
- A hard bulge appeared on the left-upper side of the stoma, below the navel. The lower lip was rock-hard and grey/blue in areas, while the upper lip was soft.
- The stoma output was very low, and there was marked difficulty urinating.
- Severe fatigue and malaise were also experienced.
- After 48 hours, there was no improvement, with continued pain and low output.
- The person was unable to reach their stoma nurse or surgeon despite repeated calls and emails and is seeking immediate advice on the possible cause and what to do.

Advice and insights for this situation include:

1. The symptoms could indicate a possible infection or ischemia. The foul odor, discoloration, hardness, pain, and systemic fatigue all warrant urgent medical evaluation.
2. Do not wait for routine callbacks. Go straight to the Emergency Department or A&E, or phone NHS 111 (if in the UK) for urgent guidance.
3. When speaking to triage staff, emphasize symptoms such as odor, bulging, pain, low output, urinary difficulty, and weak connective tissue to rule out sepsis or obstruction.
4. Stay calm but act quickly. It is better to be checked and discharged than to risk serious complications.
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