Kangaroo Club Surveys - Initial Findings Information Day - Saturday 7th October 2017 Laura Dunn

Background Dates of surgery (1982 - 2009) Place of surgery (JR = 44%, Others 56%) Stages of surgery (2 stage = 22%, 3 stage = 78%) Early complications (none 67%, some 11%, lots 22%) Later health issues (none 22%, some 55%, lots 22%)

Correlations? Too small a sample for any significant correlations to be drawn Some evidence that complications are reducing over time Big variations according to place of surgery and how ill the patient was at the start CAVEAT: We are a self-selecting sample

Immediate Complications Pouchitis 33% Wound infection 33% Adhesions 22% All Others - only mentioned once each

Longer-Term Health Issues Pouchitis 44% Arthritis 44% Iritis 22% Fistulae 22% Hernias 22% None 22% Various other health issues each mentioned once only

Diet

Advantages/Disadvantages Despite all difficulties (nobody’s journey had been entirely plain-sailing), 100% of respondents said the surgery had been worth it CAVEAT: self-selecting sample

Q17: On a scale of zero to ten… Q17: On a scale of zero to ten…. how happy would you be to recommend this surgery to other patients? Around 8. It’d depend on the individual’s attitude towards further surgery, particularly if they had to go through the same process that I did. It’s also not all sweetness and light and life can sometimes be very uncomfortable. As a means of dealing with severe UC in my opinion it’s by far the best option, but if someone is happy with an external pouch then they might be better just living with one.

Don’t believe everything you read Don’t believe everything you read. The nature of the support groups and the web means you will hear a much higher percentage of people with problematic surgeries than are actually out there. Add to that we are genetically programmed to avoid risk. You only need to hear one bad story and you quickly forget the numerous success stories you read. Try to keep things in perspective.