Had a choice between APR and ULAR - findings and consequences

TomAsh

Dear All, A few months back I was scouring this forum for answers as I agonised between complete APR and resulting permanent colostomy, and ULAR with a temporary ileostomy to preserve my sphincter. With so few people answering, and confusing outcome statistics in medical scientific papers, I mostly went with my own "gut feeling" and the advice of the closest surgeons.

Actually, I went against the advice of my Dutch surgeons who suggested APR and permanent colostomy would give me a better short term and long term quality of life after surgery. Since the surgeons were some of the best experts in the world and said the ultra-low anastomosis is technically possible, I opted for what I read in the literature - sparing the sphincter, the uro-genital nerves that form a nest or basket around the sphincter, and returning to as closely as possible situation to normal anatomy. I asked for a robot-assisted TME and hand-sown colo-anal anastomosis with a temporary ileostomy.

My surgery took place on 23rd of August. It took 10 hours and I only really woke up in my ward room 12 hrs after getting anaesthesia, in my wife's and daughter's arms. Same evening 39C fever started.

Next morning at rounds the first surgeon, the DaVinci robot expert, told me the TME went beautifully with a precise and COMPLETE excision. Great!

Then the chief surgeon, the sweet professor, came in to tell me the same but that he had some problems with mobilising and stretching my remaining colon all the way to the pelvic floor. He said that already during surgery he noticed the tissue was not well saturated with blood (pale) and he was worried about necrosis.

In two days my fever continued to grow to 41C and i.v. antibiotics and tests for sepsis, kidney/bladder infection and pneumonia were ordered. The fever was barely controllable with paracetamol, but I was kept out of danger. Endoscopy on day 3 and day 7 didn't show necrosis of the colon, so I might be able to keep it attached as is. On day 10 fever broke and I was released to recover at home.

The ileostomy is easy to manage. But I didn't count on pain getting worse, and so much discharge from the disconnected colon. Pain management is still poor because of all the fear of opiate dependency/adiction. But my other permanent medication does not allow any NSAIDs. Two weeks later sitting is limited to 20 min at a time - a doughnut cussion helps. I get exhausted by a 6-10 min walk and have to lay down for an hour at least to rest. And I had no idea I'll loose so much weight from the surgery. 12kg (26,5 lbs). I only gained 2 kg back last two weeks at home