Good evening everyone.

I'm new to this group, I was diagnosed with FAP in 1993 when I was screened as it has been passed on for generations in my family. I was unlucky enough to inherit it, I had to have a colectomy in 1995 as I already had over one thousand polyps by the age of 14, due to my age at the time I was operated on by Prof Phillips at St Marks Hospital. I've had good health on the whole until FAP started to catch up on me again. Over the last 5 years I've started having adenoma removed from my duodenum, one of which led me to having a major post polypectomy bleed all over st pancras station, thankfully the station staff and paramedics were fantastic as we're the staff at UCH who stopped the bleeding. I was due to have J Pouch surgery in August after my polyposis accelerated to the point I'm having over 70 polyps removed from the rectum every 6 months before Prof Phillips retires but another complication has occurred. I was struck down by Renal Colic due to Kidney Stones likely caused by years of mild cronic dehydration due to my lack of large intestines and not drinking as well as I should, ie instead of drinking little and often I was drinking large quantities sporadically. Over time it led to Kidney Stones that need treating first. It's led me to a lot of thinking about where to have the J Pouch operation. As I live in Nottinghamshire it is really awkward to get to and fro to St Marks in Harrow, London. As my age was the only reason I was sent to them in the first place and that the man in charge of my care over the years is retiring I'm thinking of referring myself to my local hospital that has a very new endoscopy unit and good surgery results or to Nottingham at one of the bigger ones near me now that surgery is definitely happening. Has anyone in the UK faced this sort of choice, I only stayed with St Marks in hope to avoid further surgery but now I need it is assume any bowel surgeon is as likely  to be able to do it, especially I'm not suitable for key hole due to precious open surgery. Also what can I expect from dangers like desmoids, I'm dreading the ct scans that could reveal trouble as I seem good at growing other aspects of Fap, cysts, lipomas and duodenal adenoma are my speciality��. I suppose having lived with and around Fap for all my life I've been quite ignorant about it impact and the surgery to manage the cancer risk. Any advice or experience of living a  J Pouch and the recovery would be greatly appreciated. Keep smiling everyone.

Original Post

Evan, I was diagnosed with FAP in 1981 and was one of the first to have J pouch surgery at the Mayo Clinic in Rochester, Minnesota.  I am not familiar with surgeons in the UK other than Dr. Ed Wescott in London who has just started doing BCIR surgery.   I believe he also does J pouches.  I met him at the Quality Life Association’s annual conference in Florida last fall where I was a speaker.  He is a fine surgeon who is very patient friendly.

 You should have your surgery performed by a surgeon who has done many procedures, which might entail traveling some distance.  With FAP, very regular scope exams are necessary, and these can be done locally by a good GI.  My original surgeon left a longer than normal section of rectal cuff that developed recurrent high grade dysplasia and a malignant tumor  many years later that was successfully removed.  I also had very weak sphincter muscles that probably related to the removal of the tumor.  Two surgeons recommended removal of my J pouch.  I was fortunate to learn about the BCIR since I strongly did not want an ileostomy with its associated issues.

I have only scratched the surface regarding my medical journey and what I have learned over the years.  Please feel free to send me a PM with any questions that you have.


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