I originally posted the following story in a forum on J-pouches; however, parts of this story may help you with the decisions you may need to make.
This story is about the courage of my daughter, and it begins when she was 9 as she watched her mother die from a brain tumour, and it paradoxically has both unhappy and happy endings depending on where you end the story — I share this story because it illustrates the importance of trusting your own "inner knowing" even if it sometimes seems contrary to some professional opinions:
In 2006, after 2 years of mis-diagnosis and rectum prolapse and unbelievable pain, my 16 year old daughter was correctly diagnosed with FAP (she's the only one in our family with that gene). After an 8 hour surgery to remove her colon and rectum, she awoke with a J-pouch. She was really happy, as before the surgery, she had told the surgeon that she would never again leave her house if she awoke with a bag. And of course, the surgeon was really happy to see how happy she was.
Days passed and the hospital wanted to release her but she was not wanting to eat. On the tenth day, a few hours before she was scheduled to go home, she complained of intense pain but her nurse thought she was only being difficult, and he ignored her requests for something more to ease the pain. When she rang for help in walking to the bathroom, no one came and she eventually tried to get there on her own, falling and hitting her head in the process. By the time I arrived at the hospital to drive her home, she was in intense pain and asked me to shoot her in the head so she would no longer feel the pain. She became weaker and weaker, she said her knees felt numb, an X-ray was taken, and based on what was seen, the anesthesiologist was paged to return to the hospital, and her room filled with frantic nurses, doctors, and two surgeons. It appeared she was dying as they rushed her down the hall, banging her bed into the walls on their way to the operating room.
After the operation the anesthesiologist told me my daughter may, in 2 or 3 weeks time, have memories of the two hour operation; and the two surgeons, with exhausted looks on their faces, told me they rarely felt nervous, but this time they had as they opened her up to remove the J-pouch and 80 cm of twisted and dead intestine.
My daughter awoke in ICU with a permanent ileostomy and a breathing tube down her throat that didn't allow her to verbalize how she felt, but she was able to scrawl something on a piece of paper which I still have, "Yesterday I could hear everyone talking in the operating room, and I could feel them cutting me open, but I could not open my eyes or move or say anything to stop them."
One week later the doctors told my daughter and I that she had a clot in her portal vein, another clot in a groin vein where an IV had been, and fluid in her pleural cavity and abdomen. A specialist was brought in from another hospital to place stints in the portal vein.
A few days later a doctor informed us that he mistakenly punctured her liver when he was placing a cathetor to drain the pleural cavity, and my daughter cries as she tells the nurse she will never be able to complete her training as a lifeguard — 4 weeks later she is sent home weighing 80 pounds (40 pounds less than a few months earlier).
In the months to come we sometimes returned to the emergency ward in the middle of particularily painful nights, and my daughter ended up on several operating tables to have a stoma revision, a cyst removed from one of her ovaries, and a 6 cm desmoid tumor removed from her abdominal wall.
Over the years my daughter has grown to accept her destiny, and her ongoing courage made my emergency temporary colostomy operation for a mis-diagnosed blockage in 2008 seem trivial — since that time we have often laughed together at some of our shared adventures as ostomates, and I smile inside whenever I see the puzzled looks on my doctors' faces as I try to explain why I do not want a reversal.
Last edited by three
on Tue Jul 27, 2010 4:28 pm; edited 4 times in total