Hi everyone
Currently awaiting surgery to remove stomach and section of small bowel due to having hundreds of fundic and tubular villous adenoma polyps in stomach those biopsied some had low grade dysplasia and some high grade dysplasia (cell change prior to cancer).
I am a complicated patient as I have Familial Adenomatous Polyposis gene codon 1491 of APC gene which predicts increased risk of desmoids tumours and gastric adenoma and carcinoma.
I had all colon (large bowel) and rectum removed aged 11 in 1990 and internal "s" pouch constructed from part of illeum (last section of small bowel) due to thousands of large adenoma polyps, unfortunately "s" pouch filled with 300+ tubular villous adenoma polyps again some high grade dysplasia some with low grade dysplasia so was removed in 2012 along with anus which was also turning cancerous and I was sewn up down below and given a permanent ileostomy bag (which I still hate). In 2018 I had a pancreas preserving whipple procedure to remove duodenum (1st section small bowel which was carpeted with large adenoma polyps of low grade dysplasia) along with gallbladder removal, some stomach adenoma polyps were cut away during this surgery (it was a long 8.5 hr surgery and I was pretty ill afterwards with a wound infection as I had 6 open abdominal surgeries prior to this and the new incision running horizontally under my rib cage passed through the central abdomen scar which has already been reopened 6 times). Fast forward to October 2022 to endoscopy and stoma scope under general anesthetic (outside of stoma was covered in large adenoma polyps which needed removing hence needing general anesthetic) and my whole stomach is completely full all over with polyps some fundic gland but majority adenoma polyps all growing on top of each other. Some biopsied had low grade dysplasia and some high grade dysplasia but all are tubular villous adenoma polyps which could change to cancer at anytime. During surgery they also found I had alot of low grade adenoma polyps in section of illeum near stoma.
I had a capsule endoscopy (pill cam) couple mths later which revealed small polyps throughout all remaining small bowel.
I've also had multiple ct scans and mri scan.
On 12th Jan 2023 I had outpatient appointment with consultant Upper gastric/pancreatic surgeon who did my 2012 surgery along with the hospitals lead colorectal consultant and lead esophagus / upper gastric surgeon who gave me the option of having whole stomach removed whist there is a window to do so along with removing section of illeum near to stoma which is also carpeted with large adenoma polyps and remake stoma or do nothing and wait for cancer to kill me which they predict will be in 12 mths time (they suspect I may already have stomach cancer but won't know for certain until full histology done once it is removed). They told me there are so many adenoma polyps they have no way of knowing which they have previously biopsied and once a biopsy reveals a cancer I will be unable to have surgery as chances are it would have already spread outside of stomach. They also told me there is no blood test to check stomach cancer markers. I have pretty bad pain just beneath my rib cage on right hand side of my back which they think may be due to the stomach polyps (anybody else get this?) I just want the pain to stop tbh, it's worse when walking not too bad if I stay still.
As I need 3 lead consultants and their teams surgery is probably going to be towards end February, I received pre admission appointment this morning for 25th January.
They won't know whether I can eat until after surgery due to me having lost so much small bowel already and all large bowel (they said I may have to be tube fed via my nose which will trickle feed me all day along side eating normally via my mouth but if that doesn't work i will be on total parental nutrition (I really don't want tpn).
They can't find another case like mine within the UK with Familial Adenomatous Polyposis or some one who needs stomach removing with so little bowel for any other medical conditions.
If Cancer is found when histology done I will need chemo but drs said not to worry about that for now.
They plan to enter though my 2012 whipple incision under rib cage horizontally to remove stomach but may need to open abdomen vertically too. They have agreed if scar tissue is too bad to the point they think surgery will be unsuccessful they will sew me back up and do nothing.
I will do 2 wk diet to reduce liver size (slim fast style milkshakes I think, consultant just said hospital would sort out).
I feel a bit guilty as alot of patients will be having their surgeries cancelled in order for the surgeons to fit my surgery in which is likely to take most of the day.
I was first member of family to get Familial Adenomatous Polyposis via a random gene mutation but unfortunately as its a hereditary I have passed it on to my only child who has now just turned 17 (he had all large bowel, rectum and anus removed age 7 and has permanent ileostomy bag too, he currently has adenomas which are small in size within duodenum and some adenomas in stomach but is currently refusing hospital treatment)..
Familial Adenomatous Polyposis doesn't usually cause thousands of polyps in younger children so Dr's don't know why that happened to my son and I (they just say we have an aggressive form).
Interested to hear from anybody who has had whole stomach removed and anybody who has lost any bowel as well as whole stomach. Also interested to know where they cut you open and length of time under general anesthetic. I have been advised death rate for myself is 5% during surgery and within first 30 days after surgery higher (main risk is join between small bowel and esophagus as they have to use section of small bowel to fit between the two from lower down and another join near bile ducts and stuff).
Thank you for reading x
