This topic is about a long-term journey with cystoplasty, ileostomy, and urostomy complications. It shares the experiences and challenges faced over the years, along with some advice and insights from others who have been through similar situations.

- In 1987, a cystoplasty was performed where a section of the bowel was implanted into the bladder to increase its capacity. After the surgery, there were issues with continuous mucus production in the bladder, which required weekly treatments with Uro-Tainer irrigations.

- Recurrent urinary tract infections (UTIs) and reflux caused damage to the left kidney. Despite multiple attempts to re-implant the ureter, the left kidney had to be removed.

- In 2009, a urostomy was created, but the native bladder was left in place. Bladder spasms were managed with Botox injections and Pregabalin for nerve pain.

- The removal of a bowel segment during the cystoplasty led to adhesions and repeated obstructions, resulting in the creation of an ileostomy in 1989.

- Ongoing issues include mucus build-up in the rectal stump and persistent thirst. An artificial saliva spray that was previously used is no longer available, so Oralieve Moisturising Mouth Gel is currently being used.

- Over the last 12 months, there have been three hospital admissions for small-bowel obstructions. These were managed with IV fluids, pain relief, a nasogastric tube, and Gastrografin, leading to severe weight loss and prolonged weakness each time.

- The surgeon is considering further options, including Total Parenteral Nutrition (TPN), but is concerned about the risks of surgery due to extensive adhesions. A review appointment was rescheduled to March because of doctors' strikes.

- The cost of forum membership is unaffordable for the poster, though they wish to contribute.

Additional questions and information include:

- The surgeon mentioned the possibility of long-term TPN, and the poster is researching its risks.

- The poster asked another member why an antifungal drug was required alongside their TPN regimen.

Advice and insights from others include:

1. Emotional support: Writing out one's story and engaging with peers is therapeutic and helps track personal progress.

2. TPN experience: One member used TPN and was routinely given an antifungal agent without side effects. However, they caution that TPN can lead to complications, so close monitoring is essential.

3. Bowel obstruction realities: Many members describe the extreme pain of obstructions. Some obstructions resolved without surgery, but prompt hospital care and adequate pain relief are crucial.

4. Community connection: Members encourage further discussion, noting that talking with people who truly understand eases the burden. Private messaging may require premium status on the site.

5. Medical advocacy: One member shared an experience of being dismissed in the ER and later diagnosed with a serious bowel-stump infection, emphasizing the importance of persistence when seeking care.

6. Coping tools: Posters affirm the usefulness of Oralieve gel when saliva sprays are unavailable and encourage exploring alternative mouth-moisturizing products if supply problems persist.