Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Studies & Research on Surgery and J-pouch Success Rates

Long-Term Functional Outcome and Quality of Life After Stapled Restorative Proctocolectomy (1999)
"Long-term quality of life after ileal pouch [j-pouch] surgery is excellent."
"On a scale of 0 to 10, mean happiness-with-surgery scores for each of the four postoperative intervals studied ranged from 8.9 to 9.3. "
"...quality of life was shown to increase after the first 2 years after surgery, and there was no deterioration thereafter."
"Ninety-eight percent of patients would recommend the surgery to others."
Long-term functional results after ileal pouch anal restorative proctocolectomy for ulcerative colitis: a prospective observational study. (2003)
"At 5 years, patients judged quality of life as much better or better in 81.4% and overall satisfaction and overall adjustment as excellent or good in 96.3% and 97.5%, respectively."
"We conclude that the IPAA [j-pouch surgery] confers a good quality of life. The majority of patients are fully continent, have 6 bms/d on average, and can defer a bm until convenient. When present, incontinence improves over time."
SSAT Patient Care Guidelines: Management of Ulcerative Colitis (2000-2005)
"Patient satisfaction is very high in patients with UC who undergo colectomy."
"When the IPAA [J-pouch] procedure is performed at centers with significant experience, at least 85-90% of patients have long-term functioning pouches. Nearly all patients would recommend the surgery to others, regardless of their operation (i.e., proctocolectomy with ileostomy or with IPAA )"
"At least 85% of patients have perfect fecal continence. In general, sexual function is preserved."
Prospective, age-related analysis of surgical results, functional outcome, and quality of life after ileal pouch-anal anastomosis (2003)
"Pouch failure occurred in 4.1% (pouch excision or permanent diversion)."
 "Overall, 96% of patients were happy to have undergone their surgery, and 98% recommended it to others."

Quantification of Risk for J-Pouch Failure After Ileal Pouch Anal Anastomosis Surgery (2003)
"The Cleveland Clinic series presented today suggested an overall failure rate over this 20-year period of about 4%, although they stratified the failures by time during the overall study period. In the 1980s the failure rate was around 15%. In the 1990s it dropped down to about 4%. In the last 5 years it has been approximately 2%. Again, the main contributor to failure was Crohn’s disease or suspected Crohn’s-related complications."
Surgery for inflammatory bowel disease (2008)
"A study of 1895 patients suggested that quality of life and quality of health following IPAA [j-pouch surgery] was similar that of the general population."
A comparison of hand-sewn versus stapled ileal pouch anal anastomosis (IPAA) following proctocolectomy: a meta-analysis of 4183 patients (2006)
A chart from this study shows that post-operative anal leakage only occurs in about 15% of patients who received the double-stapled technique (vs. about 27% of those who were hand-sewn), and this statistic improves over time.

Things to keep in mind when looking at these stats:
  1. Most of these studies were done ten or more years ago. I'd imagine methods have been tweaked and rates have improved even more since then. 
  2. These studies include both hand-sewn and double stapled techniques. Other studies have shown that success/failure rates greatly improve with the double stapled technique which is almost all that is used these days. 
  3. "Failure" in these studies is when things are so bad that the j-pouch was removed. Therefore "success" does not necessarily mean that all of the people from these studies still living with j-pouches are free of complications or issues. 
In my research (closely reading a multitude of medical studies as well as talking to hundreds of people online) I found that ALL of the statistics for the success of the j-pouch significantly improve even from what's listed above based on five main factors:
  1. When patients have specialized, experienced surgeons.
  2. When all possible measures have been taken to rule out Crohn's disease before j-pouch construction.  (Un/misdiagnosed Crohn's disease is the most common cause of j-pouch failure.)
  3. When they have used the newer double-stapling technique over hand-sewn anastamosis (for attaching the j-pouch to the rectal cuff / anal canal).   
  4. When the patients have had a temporary loop ileostomy to allow the j-pouch to heal before use.  
  5. When the surgery is not performed in an emergency setting and the patient has time to choose the most appropriate surgical option.
So if you are considering surgery, make sure you think about your options carefully, do your research, and get the best colorectal surgeon you possibly can!

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