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41,453 members
Jun 21, 2015

Been Way Too Long Since I Updated (Long Update)

This topic is about a personal journey through multiple surgeries, including a temporary ileostomy and an upcoming reversal. The author shares their experiences and challenges since February, offering insights and advice for others who might be going through similar situations.

- The first surgery involved reversing a problematic colostomy, rejoining the large bowel to the rectum, removing a strictured segment, and creating a temporary loop ileostomy. A wound-vac device was used in the ICU for six days.
- Recovery was initially difficult due to being placed in a hot ward and having a noisy roommate, leading to an early self-discharge.
- At home, the author followed strict recovery guidelines, such as avoiding lifting and bending, wearing an abdominal binder, gardening carefully, and walking three miles daily. Support was provided by a Coloplast representative and an ET nurse.
- Pre-reversal tests showed the colon had healed, and the final reversal was scheduled for June 25, with improved hospital conditions.
- The author faced persistent skin issues with various appliances, leading to leaks, bleeding, and a new ulcer, which required special wound-closure material.
- After the reversal surgery, a significant abdominal wound developed, requiring daily care until it healed by September 1.
- Bowel function has returned to regular, with four bowel movements each morning. The author carries emergency clothes and marshmallows for loose output and follows a 1,200-calorie diet while wearing a binder to minimize hernia risk.
- Current health concerns include extreme fatigue, dry mouth, hand pain, headaches, shaking, and low iron levels. The author is awaiting B-12 injections and has started a new iron tablet. A harsh cough has caused abdominal pain and fear of a hernia.
- Emotional strain is high due to family stress and fear of leaks. The author uses an MP3 player, books, and a journal to cope.

Products and medicines mentioned include Coloplast appliances, wound VAC, Metamucil, Imodium, Dilaudid, marshmallows, and Ricola cough drops.

Additional questions and information include:

1. Plans to stay in the hospital until able to pass solid food, walk, and remain leak-free, with questions on recognizing leaks early.
2. Seeking ways to prevent an expected incisional hernia, already dieting, exercising, and coughing against a binder.
3. Concerns about whether multiple surgeries can trigger fibromyalgia or arthritis flare-ups and if "plastic crackling" at the old stoma site signals trouble.
4. Worries about iron supplementation causing constipation and seeking dietary tips to avoid it.

Advice and insights shared by others include:

- Staying positive, as attitude aids recovery.
- Using headphones or earplugs to manage CPAP noise and improve sleep.
- The "crackling" sound around the stoma site is likely harmless, caused by small gas bubbles or hernia restrictions.
- Paranoia and fear after surgery are understandable; trust your instincts but use relaxation tools like mindfulness, meditation, and writing to manage worry.
- Journaling or turning the experience into a diary or book can be therapeutic and helpful to others.
- Combining iron tablets with Metamucil or other fiber can help minimize constipation.
See full discusison
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