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I am pleased to announce my new anastomosis had 3 1cm polyps removed after 6 months since tamis trans anal mucosectomy with ileal pouch advancement  anot nothing more.

i hope to continue 6 months scopes even though the polyp burden is much improved

Dr wrote 6 to 12 month intervals on my report after pouchoscopy for future scopes

what a difference a mucosectomy can make for fap folk or anyone at high risk for problems due to a retained rectal cuff which I no longer have since 4/17/24

there is hope out there!

len

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I agree completely Jan!!! Yes cautious and vigilant are the right words!!

im relieved but face gastrectomy total

any idea on bowel transit time when my entire stomach gets removed? Surgeon doesn’t have an answer. Same surgeon that did my trans anal mucosectomy via TAMIS on 4/17/24 at fox chase cancer center

obviously it won’t be 3 hours from mouth to expelling and there’s dumping syndrome to factor in

thanks always for your wisdom !!

I really don’t know what the transit time would be, but I believe your main concern will be life long meal size limitations. You will have to have frequent small meals and severely limit fluids with meals. I would imagine you get used to a pattern over time, and it just becomes your new normal.

As long as you retain adequate small bowel, you should be able to absorb enough nutrients. FAP isn't for sissies!

Jan

Jan,

thank you. I was aware that it he portions will be drastically smaller and more frequent without the stomach there but was told absorbing nutrients would be a problem and I’d be deficient in iron extra more than what the gap disease itself dishes out concerning iron deficiency and that I would require calcium and magnesium supplements and vitamin k maybe

the vitamin d I’m on for years already with a stomach intact

im worried about a fast rapid transit time without absorbing/digesting foods what thru call dumping syndrome and worse that lopernide or monitor won’t control the frequency once I get toral gastrfectomy  surgeon is going to do davinci laptop approach

worried in advance about what ifs ad dehydration will be an issue with the separation of food and drinks

i had percutaneous neohrostolithotimy over the summer from kidney stone 2cm

i hope the stone burden won’t be worse after gastrectomy due to severe dehydration issues

i was told I may malabsorption after gastrectomy my fear is not being able to eat aside from tpn

the surgeon said no feeding tube after surgery for someone like me he won’t consider that immediately post op - thinks I won’t need it

thank you for your response

Len

Plenty of challenges, to be sure. However, they’ve been doing gastrectomies for ages, so they know the ropes on this. Sure, having a colectomy already sort of puts you at a higher dehydration risk, but I would not assume you will have insurmountable problems.

Arm yourself with information, but don’t invite trouble. Prepare for the worst, but hope for the best.

Jan

hi Jan,


Diarrhea as a day to day and more frequent trips than just what a jpouch brings wo gastrectomy are some of my fears

uncertsin transit time and winding up needing pull ups due to dumping syndrome comming on are also fears

no one has answers, surgeon doesnt know how it will affect me post colectomy and living with jjpouch not having a stomach

I want to be able to go shopping for clothing and food on my own after recovery which takes 6 months to a year

ill have b12 issues and require shots and other vitamin deficiencies that the stomach normally takes care of absorbing into the body

Right now I’m playing what if scenarios in my head/mind and I do have a therapist I telehealth with but she knows nothing about FAP gastrectomy or colectomy with a jpouch

infact her physciatric notes on me having it listed as FOP not FAP

i asked her to read about my disease and familiarize herself

its our 3rd telehealth over zoom so she is just in the process of getting to know me

ifap is sure not for sissies. Its a major undertaking for an operation to join esophagus to snall intestine after stomach removal

plus I’ve been a foodie and. Enjoy eating ..I’m 5 feet away and 200 pounds

my other fears are prolonged need for tpn wo ability to eat by mouth

surgeon won’t be using a feeding tube to complete my gastrectomy just the dreaded  NG tube.

len

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