october 15th 2001 was my jpouch surgery, so im quite a veteran poucher here who has familial polyposis. so  my J turns 19 on the 15th of Oct.  I had a 1-step laproscopic sub total colectomy w/ jpouch which was hand assisted (the actual colon removal)  my sigmoid colon/entire rectum remains in addition to having a j-pouch fashioned in there. Had a good surgeon, rolando rolandelli  back then at temple U here in philly. was one of the best and still is but hasnt been in philly  in a godo 15 years or around. has a practice of his own under his name. was at morrestown memorial hospital in atlantic county/morrestown nj but opened own surgical clinic/suite . Highly skilled, great bed side manner.

currently being treated for ibs-d and pouchitis.   last flex sig was oct 7th. taking xifaxin for the bacteria issue and inflammatory process 3 x a day and gi do of 20 years has be about to take mesalamine, oral pentasa for frequency/urgency etc and on questran but need to get the  lite version which has aspartime in it since im diabetic type 2.  i go about 8 to -10 or 13 times a day, with familal polyposis  getting pouchitis is not as common or frequent but happens  as how often  ibd patients can get it. buit this is variable and individual.

my rectum gets  frequent scopes  twice a year or so as the entire rectum is their and has been retained. i have a sub total colectomy, not a proctocolectomy which is typically how its done.

as long as im being followed continually i shopuldnt develop  dysplasia leading to cancer. i had my operation originally propheclatically, i was 23 years old when i was operated. and i weighed over 200 lbs. and im 5 feet 5 tall.

i lost alot of weight for health reasons and to get into shape and made lifestyle changes. 6 months ago i started  to work out and walk 2x a day morning and night varyiong 3 to 6-7 miles in total a day within 2 walks combined and broken up. so the key is definitely taking in less calories. Burning more fat and calories and consuming less food.  also i drink water like crazy can kill a one gallon jug in a day, daily.  minumally my water consumption daily is 3/4s a jug,.

thats my story

happy anniversary, lauren, btw

Great news! Congratulations to you and Emmie!

@DoughBoyInPHL78 posted:

happy anniversary, lauren, btw

Thank-you!!! I loved hearing you story!!! I hope things get better for you honey. It sounds like you have a Ileo-rectal anastomosis" since you still have your rectum??? Does that sound right???

Do you want to celebrate on the 19th too???

@Kangaroo posted:

Great news! Congratulations to you and Emmie!

Thank-you! So happy to hear from you! You were one of the people that stuck up for me when I was getting bullied on here!

So happy to hear congratulations, especially from you

Hi Lauren. Some physicians have and will assume my sub total colectomy result with j-pouch formation is/was an ileo-rectal anastomosis but usually and (ira) which is ileo rectal anastomosis as your mentiond means a straight pull through operation was carried out where the result within the patient is a straight connection whereby the remaining intestine (the ileum is pulled down  and attached/anastomosed (staped or hand sewn, in that case usually stapled method is carried out) straight to the remaining colon which is the rectal area the last 6 to 8 inches, they call that part of colon taht remains where rectal area is intact the sigmoid colon.

so in regards , since i do have a j-pouch like you the only difference is i didnt have my rectum resected like you and/or most of the jpouch population had which is known as a total colectomy /protocolectomy resection.

since i did not require an ostomy and even some   surgeons wont do a one stage on anybody regardless of disease and how they were trained due to the risk of leakage/sepsis/infection my surgery is just better known as a sub total colectomy when there is a portion of large bowel still present.  in my case with having familial polyposis my gastroenterologist, same doc  going on 20 years, just does polypectomies on me for surviellence  and removes some polyps every time i go under. its working out well.  im so used to moving my bowels 10-12 times a day or so i didnt give pouchitis diagnosis much a thought. this is my normal since i  was operated  at age 23 and am age 42 now. like i been living  this way so long i became totally accustomed to  what the pouch dishes out and how it behaves.

i dont let anything stop me, i had acute chronic kidney disease from  diabetic type 2 nephropathy that lead to acute renal failure and require emergency dialysis temporarily  3 bedside icu hospital sessions of it during a 5 days hospital stay. this pccued  in summer 2019 june 1 thru 6th.

im just a strong person, and keep on on trucking.  i lost 80 lbs in like 6 months from lifestyle changes. my sugars are much better, current a1c is like 5.5 and im 155 lbs not 239 lbs anymore since 6 -8 months ago and im 5 feet 5 tall. medium size underwear now and waist size 32

so im happy. life style changes did the trick, better eating habits and  nothing after 5pm or maybe not past 530 pm

Thanks for chatting. ive been around this site since my surgery and surgeon then mentioned it.

Len

@DoughBoyInPHL78 posted:

Hi Lauren. Some physicians have and will assume my sub total colectomy result with j-pouch formation is/was an ileo-rectal anastomosis but usually and (ira) which is ileo rectal anastomosis as your mentiond means a straight pull through operation was carried out where the result within the patient is a straight connection whereby the remaining intestine (the ileum is pulled down  and attached/anastomosed (staped or hand sewn, in that case usually stapled method is carried out) straight to the remaining colon which is the rectal area the last 6 to 8 inches, they call that part of colon taht remains where rectal area is intact the sigmoid colon.

so in regards , since i do have a j-pouch like you the only difference is i didnt have my rectum resected like you and/or most of the jpouch population had which is known as a total colectomy /protocolectomy resection.

since i did not require an ostomy and even some   surgeons wont do a one stage on anybody regardless of disease and how they were trained due to the risk of leakage/sepsis/infection my surgery is just better known as a sub total colectomy when there is a portion of large bowel still present.  in my case with having familial polyposis my gastroenterologist, same doc  going on 20 years, just does polypectomies on me for surviellence  and removes some polyps every time i go under. its working out well.  im so used to moving my bowels 10-12 times a day or so i didnt give pouchitis diagnosis much a thought. this is my normal since i  was operated  at age 23 and am age 42 now. like i been living  this way so long i became totally accustomed to  what the pouch dishes out and how it behaves.

i dont let anything stop me, i had acute chronic kidney disease from  diabetic type 2 nephropathy that lead to acute renal failure and require emergency dialysis temporarily  3 bedside icu hospital sessions of it during a 5 days hospital stay. this pccued  in summer 2019 june 1 thru 6th.

im just a strong person, and keep on on trucking.  i lost 80 lbs in like 6 months from lifestyle changes. my sugars are much better, current a1c is like 5.5 and im 155 lbs not 239 lbs anymore since 6 -8 months ago and im 5 feet 5 tall. medium size underwear now and waist size 32

so im happy. life style changes did the trick, better eating habits and  nothing after 5pm or maybe not past 530 pm

Thanks for chatting. ive been around this site since my surgery and surgeon then mentioned it.

Len

You are 100% right about that, most surgeons would definitely not do a one stage due to possible side effects. I had a 2 stage step.

I am soo happy you are so resilient and doing better!

I see why most people would assume an IRA since that is what it sounds like. Have you met other people like you too???

I bet your situation is hard for other doctors to understand that, especially since some doctors will say colectomy for a nickname for proctocolectomy. Why did they want you to keep your rectum instead of just doing a full-blown proctocolectomy???

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

@DoughBoyInPHL78 posted:

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

lauren,

good evening.  for reference the girl i was referring to in my prior message was not who you mentioned. This one, Tiffany was her name from alberta canada or around  she went by the screen name here "tiffy-poo" if i recall correctly. And she has not visited the website here in like over a decade. I was some years after my operation but not as long as i am now.   She would probably be like in her early 30s roughly by now. 

The woman you spoke of, i dont know of/she is new. Tiffy poo did not have fap but UC. 

in regards to my well being, i am doing well with my outcome. One gets accustomed/used to their new normal especially when its been over a decade since surgery.

I am a 'if nothing is broke, then why fix' kinda guy. My plumbing the way it is with imperfections is working. With a total colectomy and my sub total theres not a drastic difference in bowel habits/frequency.  The increased amts of water consumption i drink and the nuts I consume and  decaf coffee hot & iced are all constributing factors in my  increased frequency.

certainly every ones tolerance levels are different and its individual very much so,   what one  is willing to put up with following  outcome wise after our types of surgery.

I been living like this for so long going frequenctly to the bathroom that its just normal 'feel' wise to me.

i am able to go walking 2 x a day like every day to control my diabetes since  i havent been medicated in over 1 year and my last a1c was 5.5 on 8/6/20.  my weight is down from 239 lbs to 155 lbs  so i cant complain much,.

the pouchitis doc saw in there on flex sig morning october 7th he has me on xiafaxin 550 mg 3x a day right now.  i'll start a uc med for frequency/diarrhea/inflammation. I am sure you know of it..mesalamine oral/pills 1.2  mg 2x a day morning and night once silverscript my part d   approves teh prior auth.

good to chat with you. dont want to highjack your thread or make it seem that way.

Take care

Len

@DoughBoyInPHL78 posted:

lauren,

good evening.  for reference the girl i was referring to in my prior message was not who you mentioned. This one, Tiffany was her name from alberta canada or around  she went by the screen name here "tiffy-poo" if i recall correctly. And she has not visited the website here in like over a decade. I was some years after my operation but not as long as i am now.   She would probably be like in her early 30s roughly by now.

The woman you spoke of, i dont know of/she is new. Tiffy poo did not have fap but UC.

in regards to my well being, i am doing well with my outcome. One gets accustomed/used to their new normal especially when its been over a decade since surgery.

I am a 'if nothing is broke, then why fix' kinda guy. My plumbing the way it is with imperfections is working. With a total colectomy and my sub total theres not a drastic difference in bowel habits/frequency.  The increased amts of water consumption i drink and the nuts I consume and  decaf coffee hot & iced are all constributing factors in my  increased frequency.

certainly every ones tolerance levels are different and its individual very much so,   what one  is willing to put up with following  outcome wise after our types of surgery.

I been living like this for so long going frequenctly to the bathroom that its just normal 'feel' wise to me.

i am able to go walking 2 x a day like every day to control my diabetes since  i havent been medicated in over 1 year and my last a1c was 5.5 on 8/6/20.  my weight is down from 239 lbs to 155 lbs  so i cant complain much,.

the pouchitis doc saw in there on flex sig morning october 7th he has me on xiafaxin 550 mg 3x a day right now.  i'll start a uc med for frequency/diarrhea/inflammation. I am sure you know of it..mesalamine oral/pills 1.2  mg 2x a day morning and night once silverscript my part d   approves teh prior auth.

good to chat with you. dont want to highjack your thread or make it seem that way.

Take care

Len

Totally makes sense!!! Well I am happy you are doing great! And yeah I understand about frequency, I go about 13-20x a day so its a lot, but we manage! Yeah I know mesalamine very well! I have been on it in pill form and rectal form in the past, 6 years ago though

I have two questions for you!

How are you going to celebrate your anniversary?

Is your J-pouch on top of your rectum or inside you rectum???

Lauren,

as far as i know its on top of my rectum. i think when   gi doc goes in to do my flex sig he is just going into the original back and area, no pouch in there like  what is the norm. 

but anyway because i did not have a protectocolectomy with completele rectal resection.excision leaving the 1-2 cm cuff only/spincter to my knowledge the jpouch is at the top and when doc goes in there to do a flex sig/colononscopy on me he has to go awhile into rectum before he sees the pouch/enters it,

either way its working for me, no reason or need to mess with someone that isnt broke or effecting my day to day,. im still able to live a full life despite the toilet trips and mild pouchitis issue at play right now causing increased frequency and urgency.

the xifaxin takes weeks to show results. may  it might help and the pentasa too might help after receive it as im waiting for my part d to approve the prior auth from the gi doc.

as far as my anniversary 19 years tommorrow, nothing special. i  celebrate life everyday because its a gift as it is

Len

Lauren - you are such a nice and positive person. I'm glad you're on the forums.

@DoughBoyInPHL78 posted:

Lauren,

as far as i know its on top of my rectum. i think when   gi doc goes in to do my flex sig he is just going into the original back and area, no pouch in there like  what is the norm.

but anyway because i did not have a protectocolectomy with completele rectal resection.excision leaving the 1-2 cm cuff only/spincter to my knowledge the jpouch is at the top and when doc goes in there to do a flex sig/colononscopy on me he has to go awhile into rectum before he sees the pouch/enters it,

either way its working for me, no reason or need to mess with someone that isnt broke or effecting my day to day,. im still able to live a full life despite the toilet trips and mild pouchitis issue at play right now causing increased frequency and urgency.

the xifaxin takes weeks to show results. may  it might help and the pentasa too might help after receive it as im waiting for my part d to approve the prior auth from the gi doc.

as far as my anniversary 19 years tommorrow, nothing special. i  celebrate life everyday because its a gift as it is

Len

Yeah, I figured it was on top! I have seen pictures of that before I believe. It looks much taller with everything there, pretty cool! But yeah, I totally agree!! Since i has been working this long, I would keep it! Messing with things can cause problems lol.

Some people on here that had a one step procedure have gotten a proctocolectomy though. I guess some one step people are different. Pretty cool how you represent the J-pouch Community and the Ileorectal Anastomosis Community; you are part of both communities lol. That must feel pretty cool! Lol.

How many BMS do you have when everything is normal??? I typically have 13-20/daily.

You should totally celebrate tomorrow, I would say order food or eat something unhealthy

@Kangaroo posted:

Lauren - you are such a nice and positive person. I'm glad you're on the forums.

THANK-YOU!!! That means more to me than you will ever know I definitely try not to let negativity stop me lol.

hi lauren

Its nice to communicate with you answer relay message through here back and fourth, i appreciate it

as far as  how many bowel movements i have, its usually 10-12 times a day but honestly i do not let it stop me or count them amt of trips. just an estimate.

i dont know how long i have pouchitis or ibs because prior to the latest scoping which was a flex sig and an ileo-oscopy following while i was sedated already the prior flex sig he did was 1 year ago. The whole covid-019 crisis and  the lock down  we had  delayed  my 6 month check in for both upper and lower scopes.

i had my monthly phone chat with my  gastro today and he said the j-pouch looks fine,  pretty clean/polyps free. My disease has backed off a bit in other words, the pouch tissue looks healthy too however up the ileum during ileooscopy higher up past the jpouch itself within rectal proximity still there are polyps there.  In 4 to 5 months he would like to repeat the flex sig/and ileooscopy scoping so he can re examinine the ileium/tissue to mak ethe call about how the ibs is doing and pouchitis.

in the mean time im waiting for pentasa to come through on my part d drug plan, the proior auth aopproval letters from insurance so i could jump on it and take it.

i consider myself lucky with regards to having had the surgery as a prevent at age 23 so i wouldnt get colorectal cancer and having had a one step and  the fact that i got away with the sub total colectomy and am 19 years post op, that is amazing absolutely in and of itself.

while it may be an odd situation to some that i didnt get a total colectomy , this is possible in some instances depending on the person internally.  i am thankful to god and my surgeon at the time!

concerning junk i dont touch the stuff, i eat pretty healthy, a salad sometimes even twice a day not just once a day everyday with dinner or lunch, i eat very little salt in a day well under 1500 to 2000 most people consume either of those numbers in a day.  and chips are a no no and is diet soda and no candy.

i am a type 2 diabetic for which im unmedicated becaus emy a1x ha sbeen stable in the low to mid 5's.

walk daily twice a day to keep my weight  at 155-160 lbs and limit calories intake and eat less and burn more through walking than from the food calories i consume in a day in total..

i gotta stay doing what i do, diabetes type 2 is tricky, especially as we get older, some day i may require anti diabetic  agents/meds again..

metformin failed me and i developed acute  chronic kidney disease which lead to acute renal failure which require 3 emergency in hospital bedside icu sessions to resolve.  very scary.  i was accumulating fluid/swelling in my body/edema from my kidneys not working effeiciently due to high blood pressure and retaining water/salt in the body.

nobody should go through what i did and in a lifetime  folks much older than me in their life hav enot endured what i have in my 42 soon 43 years of life.

people live a long life and dont go through these problems. so i chose to be careful, watch my diet and  excerise burn calorie sthru the walking i do.

a size 32 waist and 5 feet 5 tall and about 160 is doing me godo as well as looking fantastic in the mirror.

Len

@DoughBoyInPHL78 posted:

hi lauren

Its nice to communicate with you answer relay message through here back and fourth, i appreciate it

as far as  how many bowel movements i have, its usually 10-12 times a day but honestly i do not let it stop me or count them amt of trips. just an estimate.

i dont know how long i have pouchitis or ibs because prior to the latest scoping which was a flex sig and an ileo-oscopy following while i was sedated already the prior flex sig he did was 1 year ago. The whole covid-019 crisis and  the lock down  we had  delayed  my 6 month check in for both upper and lower scopes.

i had my monthly phone chat with my  gastro today and he said the j-pouch looks fine,  pretty clean/polyps free. My disease has backed off a bit in other words, the pouch tissue looks healthy too however up the ileum during ileooscopy higher up past the jpouch itself within rectal proximity still there are polyps there.  In 4 to 5 months he would like to repeat the flex sig/and ileooscopy scoping so he can re examinine the ileium/tissue to mak ethe call about how the ibs is doing and pouchitis.

in the mean time im waiting for pentasa to come through on my part d drug plan, the proior auth aopproval letters from insurance so i could jump on it and take it.

i consider myself lucky with regards to having had the surgery as a prevent at age 23 so i wouldnt get colorectal cancer and having had a one step and  the fact that i got away with the sub total colectomy and am 19 years post op, that is amazing absolutely in and of itself.

while it may be an odd situation to some that i didnt get a total colectomy , this is possible in some instances depending on the person internally.  i am thankful to god and my surgeon at the time!

concerning junk i dont touch the stuff, i eat pretty healthy, a salad sometimes even twice a day not just once a day everyday with dinner or lunch, i eat very little salt in a day well under 1500 to 2000 most people consume either of those numbers in a day.  and chips are a no no and is diet soda and no candy.

i am a type 2 diabetic for which im unmedicated becaus emy a1x ha sbeen stable in the low to mid 5's.

walk daily twice a day to keep my weight  at 155-160 lbs and limit calories intake and eat less and burn more through walking than from the food calories i consume in a day in total..

i gotta stay doing what i do, diabetes type 2 is tricky, especially as we get older, some day i may require anti diabetic  agents/meds again..

metformin failed me and i developed acute  chronic kidney disease which lead to acute renal failure which require 3 emergency in hospital bedside icu sessions to resolve.  very scary.  i was accumulating fluid/swelling in my body/edema from my kidneys not working effeiciently due to high blood pressure and retaining water/salt in the body.

nobody should go through what i did and in a lifetime  folks much older than me in their life hav enot endured what i have in my 42 soon 43 years of life.

people live a long life and dont go through these problems. so i chose to be careful, watch my diet and  excerise burn calorie sthru the walking i do.

a size 32 waist and 5 feet 5 tall and about 160 is doing me godo as well as looking fantastic in the mirror.

Len

Of course, I always love doing that XD. And yeah when I had my colon, I had chronic constipation, ever since its been gone, my life is way better! I will take the 13-20x a day any day lol.

Happy to hear your pouchy is fine

You might need more sodium since you have no colon, definitely watch your sodium levels.

Congrats on being type 2 diabetic without meds, that is pretty rare

Looks like you are doing amazing!!!! I wish you would do something to celebrate tomorrow! Do something, go to a movie or something lol.

@Former Member posted:

Of course, I always love doing that XD. And yeah when I had my colon, I had chronic constipation, ever since its been gone, my life is way better! I will take the 13-20x a day any day lol.

Happy to hear your pouchy is fine

You might need more sodium since you have no colon, definitely watch your sodium levels.

Congrats on being type 2 diabetic without meds, that is pretty rare

Looks like you are doing amazing!!!! I wish you would do something to celebrate tomorrow! Do something, go to a movie or something lol.

@DoughBoyInPHL78 posted:

hi lauren

Its nice to communicate with you answer relay message through here back and fourth, i appreciate it

as far as  how many bowel movements i have, its usually 10-12 times a day but honestly i do not let it stop me or count them amt of trips. just an estimate.

i dont know how long i have pouchitis or ibs because prior to the latest scoping which was a flex sig and an ileo-oscopy following while i was sedated already the prior flex sig he did was 1 year ago. The whole covid-019 crisis and  the lock down  we had  delayed  my 6 month check in for both upper and lower scopes.

i had my monthly phone chat with my  gastro today and he said the j-pouch looks fine,  pretty clean/polyps free. My disease has backed off a bit in other words, the pouch tissue looks healthy too however up the ileum during ileooscopy higher up past the jpouch itself within rectal proximity still there are polyps there.  In 4 to 5 months he would like to repeat the flex sig/and ileooscopy scoping so he can re examinine the ileium/tissue to mak ethe call about how the ibs is doing and pouchitis.

in the mean time im waiting for pentasa to come through on my part d drug plan, the proior auth aopproval letters from insurance so i could jump on it and take it.

i consider myself lucky with regards to having had the surgery as a prevent at age 23 so i wouldnt get colorectal cancer and having had a one step and  the fact that i got away with the sub total colectomy and am 19 years post op, that is amazing absolutely in and of itself.

while it may be an odd situation to some that i didnt get a total colectomy , this is possible in some instances depending on the person internally.  i am thankful to god and my surgeon at the time!

concerning junk i dont touch the stuff, i eat pretty healthy, a salad sometimes even twice a day not just once a day everyday with dinner or lunch, i eat very little salt in a day well under 1500 to 2000 most people consume either of those numbers in a day.  and chips are a no no and is diet soda and no candy.

i am a type 2 diabetic for which im unmedicated becaus emy a1x ha sbeen stable in the low to mid 5's.

walk daily twice a day to keep my weight  at 155-160 lbs and limit calories intake and eat less and burn more through walking than from the food calories i consume in a day in total..

i gotta stay doing what i do, diabetes type 2 is tricky, especially as we get older, some day i may require anti diabetic  agents/meds again..

metformin failed me and i developed acute  chronic kidney disease which lead to acute renal failure which require 3 emergency in hospital bedside icu sessions to resolve.  very scary.  i was accumulating fluid/swelling in my body/edema from my kidneys not working effeiciently due to high blood pressure and retaining water/salt in the body.

nobody should go through what i did and in a lifetime  folks much older than me in their life hav enot endured what i have in my 42 soon 43 years of life.

people live a long life and dont go through these problems. so i chose to be careful, watch my diet and  excerise burn calorie sthru the walking i do.

a size 32 waist and 5 feet 5 tall and about 160 is doing me godo as well as looking fantastic in the mirror.

Len

How was your celebration???

hi lauren,

just a regular day was had the 15th - 19 year anniversary.,  as mentione din  a previous response to you. I do not eat junk. I recovered from an aki (acute renal injury) for which a hospitalization occured and was placed in icu, this was last year july 1 thru 6th 2019.  I had a past history of chronic kidney disease which no one knew was acute and not permananant.  Things went on for a bit and it ende dup turning to failure for which 3 emergency bedside hospital setting dialysis sessions were required.

i lost  80 lbs for health reasons obviously and made life style changes. regardless if one is coloned or not, salt is not  "good", not in my case.  salt is bad for kidneys and blood pressure to name a few. In my case the salt/edema issue was pronounced in that my kidneys started to fail because i was swollen everywhere from  fluid the kidneys couldnt clear building up in my hands making them puffy and also making my body parts swollen (feet/ankles).

some folks can do the salt thing and never been thru or go through what i have but i been through so much. i will refrain from the garbage foods for life.  i choose to keep fit from now on and watch my food intake and increas ewater consumption.

when you get that sick and you are still young as myself, it totally changes your mentality and outlook on eating/food and you start to do the right things to  get on track. atleast i can say thats been the case for me.

some of us learn the hard way or dont learn at all. And i suffered and learned the hard way but  prevailed and god gave me a new lease on life!  that i will cherish from now on and do the right things!

--Len

@DoughBoyInPHL78 posted:

hi lauren,

just a regular day was had the 15th - 19 year anniversary.,  as mentione din  a previous response to you. I do not eat junk. I recovered from an aki (acute renal injury) for which a hospitalization occured and was placed in icu, this was last year july 1 thru 6th 2019.  I had a past history of chronic kidney disease which no one knew was acute and not permananant.  Things went on for a bit and it ende dup turning to failure for which 3 emergency bedside hospital setting dialysis sessions were required.

i lost  80 lbs for health reasons obviously and made life style changes. regardless if one is coloned or not, salt is not  "good", not in my case.  salt is bad for kidneys and blood pressure to name a few. In my case the salt/edema issue was pronounced in that my kidneys started to fail because i was swollen everywhere from  fluid the kidneys couldnt clear building up in my hands making them puffy and also making my body parts swollen (feet/ankles).

some folks can do the salt thing and never been thru or go through what i have but i been through so much. i will refrain from the garbage foods for life.  i choose to keep fit from now on and watch my food intake and increas ewater consumption.

when you get that sick and you are still young as myself, it totally changes your mentality and outlook on eating/food and you start to do the right things to  get on track. atleast i can say thats been the case for me.

some of us learn the hard way or dont learn at all. And i suffered and learned the hard way but  prevailed and god gave me a new lease on life!  that i will cherish from now on and do the right things!

--Len

Yeah, I understand, I just wish you would have went to a movie or something but you seem happy so that is all that matters