High grade dysplasia adenoma polyps in stomach (I have FAP no duodenum, colon or rectum)

JenniferLouise

Has anybody had their whole stomach removed but already had no colon or duodenum?

Also has anybody got no stomach, no colon and no small bowel at all? (can you even survive without those organs? / I'm guessing permanent tpn but how does waste leave the body with no small bowel for a stoma?)

My recent scopes (14th Oct 2022) show high grade and low grade dysplasia adenoma polyps scattered in all sections of my stomach (heavily carpeted in places). I also have fundic gland polyps too all over the place which I've had since childhood.

Unfortunately 2nd section of small bowel called jejunum has polyps scattered throughout as does my remaining illeum (3rd section small bowel). My stoma needs remaking and first 20 cms of illeum at least removing from that end where adenoma polyps are most heavily carpeted.

I'm 42 and live in the UK (Cheshire)

Background: 1990 / age 10: First in family to be diagnosed with Gardner's Syndrome (random mutation) colon/rectum removed and internal s pouch formed from some of the small bowel (ileum)

2006 - vertical c section

2012 age 32 s pouch and anus removed (s pouch filled with 300+ tubuarvilious adenoma polyps some high grade dysplasia some low. Given permanent ileostomy.

2018 age 38 pancreas preserving whipple (retained all stomach as surgeons decided to cut adenoma polyps away instead to let me retain it as long as possible) +. Gallbladder also removed as I had gallstones. During surgery I had scope and there were scattered adenoma polyps in jejunum but small in size so this was connected to stomach once duodenum removed (8 1/2 hour surgery)

14th Oct 2022 / age 42 surgery to remove adenoma polyps and granulomas from outside stoma and large adenoma near entrance causing obstructions. ileum scoped through stoma during same procedure, it was heavily carpeted with adenoma polyps for first 29cm but adenomas are more scattered after that. stomach completely full and carpeted with both fundic gland polyps and adenoma polyps (biopsies came back high grade dysplasia from some adenomas and low grade from others).

Nov 2022 surgeons currently deciding what to do with me, it's looking like total gastrectomy and possibly removal of all remaining small bowel (unless they let me keep jejunum and remaining ileum with the least polyps, attach those to oesophagus, create new stoma and just regularly scope everything.

With myself it seems when they remove bowel with adenomas they just reform and spread to a new location (that seems to have happened when duodenum removed adenoma polyps just formed on and around stoma area and through that section of bowel). I think if some small bowel is left in a few years it will be heavily carpeted in polyps. Several consultants are having meeting to decide what's best and im having ct scan, mri and capsule endoscopy this week

Added complication is my uterus has hyperplasia (biopsies taken aug 2022) also have 11cm cyst on ovary and 5cm one on other ovary and scan shows desmoid or adhesions (from all the pelvic and abdominal surgery I've had no doubt) stuck between both ovarian cysts and bladder so surgeons need to decide what to do with that and whether to remove uterus and cysts at same time as stomach.

Interested in hearing from anybody who has had stomach, duodenum, colon and rectum removed and anybody who has had all small bowel removed as well as these for any medical reason and how you are coping etc

Thank you for reading

Jennifer