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Reply to "6 YEAR J-POUCH ANNIVERSARY TODAY"

Lauren,



i begged the surgeon and pleaded at the time to push for a one step procedure. he was highly regarded and confident he could do a 1-step on me and it would be a great outcome



while not typical to be similar to that of an ira outcome (ileo rectal anastomosis) there are some folks with my genetically inherited ilness, the famiilal polyposis who have chosen to have the ira without jpouch formation, whats called a straight pull through connection directly down to the retained rectum but that option is les sdesireable results an dputs more straight on the rectum i think.



i think regardless, just  by not having the large intestine or majority of it gone anymore, we are all suseptible to the frequent bowel movements. in my case i kept going and going without realization that i have pouchitis lately withoutr fever issues at all.  just urgency/increased frequency.strong urges to use toilet. never had an accident probably because i have  the entire rectum.



my surgeon in 2001 just mentioned i could have frequent survillence to stay on top of the polyps growing and have polypectomie st o remove suspicious ones and biosipied

its been twenty years for me soon and now in my 40's and  while there are no guarentees like with anyone not just health related things, the odds are pretty good in my favor with more frequent  scopings, upper and lower if followed adequately, i may never develop cancer in the retained rectum.



while its diseased its been manageable

my dad had an ileoostomy from age 57 when diagnosed with colon cancer to  age 79 when died of stroke complications



in is case he was found to have 3 cancerous polyps, they grew in his rectum, like grew in completely so the rectum could not be spared/saved an dhad to come out. he was told his 3 polyps that became cancer then would become cancer if not removed before teh diagnosis  was called and he ignored the doctor and told my mom, im going home and wont have those polyps in the rectum removed.   doctor saidt hey would become cancer within a year or two and thats what happened.



in my case i am  always being followed. everyone is different though nd my dad had white coat syndrome, was afraid of doctors and stubborn.



at the support group that use to happen in philly at the hospital where i had my operation ive met other jpouchers but they either had a total protectomy/ with jpouch like you - only anal spincter 1-2 cm cuff with jpouch anastomosis or  an ileoostomy or even a bcir or koch pouch procedure.  not one of them had  their entire retained rectum.





we used to have a girl on here in her twenties from canada with an ileo rectal anastomosis for u.c. though not for fap - my disease.  for years only on when i wa sstarting out here.



shes not been around, she often posted years ago when i was newish here about  what is like for her living with  the ileo rectal anastomosis - straight pull thru with no jpouch. she too had high freqeuncy just like i do and urgency



. im not sure what to say to that it wasnt pouchitis as she did not have a jpouch or any internal pouch but generally all literature online,says that a straight pull thru with no internal pouch results in the patient having  too many bowel movements throughout the day and leakage and urgency issues.



she was operated as  a young adolescent preteen i think, she lived in canada and would sign on here.

i was always petrified of an ostomy and never wanted to have it, so i guess the surgeon did me a favor and did my procedure as a one step.



lots of surgeons avoid one steps due to high rate of anastomotic leaks occuring while the patient is in hospital  immeditaly following the operation to remove whole colon and create a jpouch.



in a male often times the pelvic cavity turns out to me narrower than in a female and this is a risk too. sometimes the mesentry (the ability of the intestine/small bowel to be pulled down and reach to form the anastomisis is too short so the ikleoostomy is created in taht instance to give the small bowel a chance to rest before the surgeon can go back in and stretch it. or even  might not be able to create them a jpouch the patient  and the ileo is then permanant.



this is less the case now though with more  training the surgeons recieve and  medicine evolving with regards to techniques.



i mean i  had my operation   20 years ago soon so back then the surgery even lapro and hand assisted today the whole colon removal and jpouch creation can be done in like 2 hours tops with the davinci/robotic method. when i had my operation, since 20 years ago there wa sno robotic/davinci method assited surgery.



sorry for talking so much, just wanted to be thorough here.



Good night,



len

Wow that was great! Very thorough!!! I would have rathered you get a a full blown proctocolectomy but you seem to be doing great with what you have, which I think is great!!! Maybe it was meant to be this way! You are a rare case but that just makes you special

And yeah, I know who you are talking about, that woman from Canada- i talked to her recently, she is not doing too good. I was trying to talk her out of suicide the other week, I believe I succeeded in talking her out of it, she plans on selling her house and moving to the U.S to seek help for her condition. I just hope she does not give up. I know life can be hard but we should refuse to let the universe beat us, you know???

Your J-pouch is on top of your rectum or inside your rectum???

And yeah, my surgery was done robotically, by Davinci

Last edited by Lauren Of Emerald City
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