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adenomatous polyps in j-pouch. veteran poucher here, since 2001.

L Len1978Member
i had my original surgery back in 2001 my dr rolando rolandelli at temple, when he still practiced in philadelphia. he left not long after having operated on me and is in practice at morristown memorial hospital now with his own surgical private practice within that hospital. while it took many years to develop my first of a few polyps following jpouch surgery in the anus/remaining rectal cuff, i must say i am quite scared of this diagnosis. i am being followed every 5 to 6 months with upper endoscopy and pouchoscopy/colonoscopies (my gastrointerolgist does a full back end scop up the ileum on me each time.

i was wondering and wanting to know anyone with fap on here know of any on going studies being done or what lies on the horizon for someone like me with plenty of adenomatous polyps in the rectum. the polyps started to grow in the rectal canal within the last several years. i am constantly looking on medscape/pubmed for any newer articles leading to success stories of patients with fap who take sulindac in rectal suppository form and have sucess in reducing the number of adenamteous polyps in the rectum. my g.i believes celebrex is dangeous due to my having high blood pressure and being on hormone replacement therapy (testosterone). my hemoglobin is normal for a male, upwards of 15-16 when i get it checked so i am not anemic but occasionally i see a small amt of blood in my feces mixed in with the diarrhea. and have occasional abdominal pain.

im not looking for any advice on other surgical procedures. the pouch is not perfect and i have had a diagnosis of microscopic colitis in the past im not looking to part ways with my pouch, just tos ee who else lives with scopes every 5-6 months, has polyps in their j-pouch/anus/bleeds occasionally from them and has a j-pouch. personally, im a one step j-pouch patient, in 2001 the operation took 10.5 hours what should have been 8 1/2 hours back then, today i understand a one step laproscopic assisted pouch can be done in 2-3 hours in the or.

no punctuation because im on an older chromebook and their is no capslock key. my apoligys in advance.


also does anyone years later have an issue with passing water and wet underwear streaks if they dont empty their pouch on an every 1 1/2 to 2 hour schedule? and do polyps adenomatous in the jpouch itself or not cause water to seep out of the anus inbetween bowl movements? there is no smell from the clear liquid discharge and its not mucous because its not thick/chalky like substance but watery and clear.


im available to chat, and have yahoo messenger, if anyone uses chat and wants to have an fap buddy pm me.

additionally im now a 36 year old man.


thx

-len
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L Len1978Member
charlie,


i had a lapro hand assisted one step back in 2001. stapled.


i am wondering that if i were to have a hand sewn procedure with mucosectomy would i be dealing with remaining cuff/anal/rectal polyps.


reguarding the watery discharge onto my underwear when i walk or lift heavy items or sleep, its non smelling, and may be sweat. i am on hrt/testosterone therapy for 7 years now and am of a heavier wet set, 5 feet 7 frame and 240 lbs, maybe my sweating/weight has something to do with watery moisture/wet butt/sweat in my underwear on my behind.

i looked at the site you have, thus far i have yet to see anything about folks with adenomas in the jpouch/rectum.


-len
C ChuckusMember
Len,

Whether the the procedure was hand sewn or not I don't think makes much of a difference. Polyps would show up either way, the mucosectomy (I think and from what I've read) would have no bearing on whether you get polyps in the cuff, etc... I have had polyps removed and had them come right back in the same spot as before.

The watery discharge may very well be due, in part, to what your saying. Sounds logical.

I have a friend who has polyps in her pouch, they are just managed and watched frequently. Step up your monitoring to keep an eye on them, my suggestion.

Charlie
L Len1978Member
charlie,

thanks for the conversation. does your friend have adenomas polyps in her jpouch specifically or different kind?

the surgeon in 2001 who did my surgery told us, my mother heard with her own 2 ears as well that they can be removed once they developed and that is not a necessary pre-cursor toward cancer evolving in future. that said my gastro doc is from another school where he pushes the surgical approach/or throws it at his patients so to speak. i am getting my jpouch scoped and upper g.i's done every 5 to 6 months sometimes i push them longer, he has me do the complete thorough bowel prep like osmo prep for my scope as he goes all up thru the ileum, he is from the old school and with him it doesnt matter if you dont have a colon he requires extensive prep, but i do a certain amt of pills before i just feel sick, like 10-12 in intervels of 4 at a time of the osmo and im cleaned out in no time.

has your friend been threatened by her gi with pouch removal due to adenomas polyps? maybe i just need a dr thats not so alarming. he is my moms gastroentologist of 25-30 years, and id been seeing him since being diagnosed with fap at 22 years old, now im 36.


anyway nice talking to you, thanks!

-len
C ChuckusMember
First of all, if your doing a FULL prep for Scopes, particularily lower scopes, that's crazy and really unnecessary. You will dehydrate yourself. Stop doing FULL prep. Take some Milk of Magensia (MOM) and that'll do the trick pretty well in combination with going to a clear, liquid diet about 12 hours before scopes. Take an enema or two before you go as well.

She does have adenomas in her pouch, they just deal with them as they arise. We have the same GI at Mayo, simply removes them and biopsies them. No he's never "threatened" her with pouch removal, if I was ever "threatened" by any Doctor, I'd switch doctors as I won't tolerate that. They may be doctors, but, it's MY LIFE.

If you have a GI who is so "pro surgery" methods, I'd change GI's! That combined with the "Full Prep" tells me he is clueless! He can make you really sick, really quick.

Sounds to me like you need a NEW GI who is really up to speed and KNOWS what he's talking about and doing.......just my $0.02

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