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Looking for High Output Stoma people

Posted by w30bob, on Mon Jul 22, 2019 8:49 am

Hi Gang,

  I'm looking for those who have high output stomas to chat with about managing lifestyles and how to do things in general.  I've been reading profiles but it would be easier and quicker if those with high outputs, who would like to share info, could let me know who they are.  Thanks in advance.

regards,

bob

 

Ok.......let me clarify what I mean by High Output.  If you routinely empty your bag more than 10 times a day I'd consider that High Output.  It depends on how much you eat and drink, so for discussion's sake I'm interested to know how you deal with everyday life things when you know you'll be emptying your bag frequently.  Being short-gutted I was emptying my bag between 20-30 times per day but now have my hydration under control so I've reduced that significantly.  But still having to empty it rather frequently has limited what activities I do and how spontaneous I can be.  Would like to discuss how you deal with this and see if you have any ideas I haven't already thought of.  To be clear, I don't empty my bag because it's full........I empty it way before because I can fill it up very quickly depending on what I've eaten or drank.  But it's impacting my life negatively and I want to fix it.  So I'm curious how you guys handle it.

thanks,

bob

Reply by newyorktorque, on Mon Jul 22, 2019 8:07 pm

Hi bob I have high output.  Yes it can be overwhelming at times especially during meals.  Im on omeprazole which does slow down the output a bit but my output level is still high.  I recently learned the hard way that stove top stuffing is not good to eat before bedtime lol.  Like you I empty the bag before its anywheres near full so I spend a lot of time in the bathroom.  It can be daunting but it beats the alternative.

Reply by w30bob, on Tue Jul 23, 2019 1:14 am
newyorktorque wrote:

Hi bob I have high output.  Yes it can be overwhelming at times especially during meals.  Im on omeprazole which does slow down the output a bit but my output level is still high.  I recently learned the hard way that stove top stuffing is not good to eat before bedtime lol.  Like you I empty the bag before its anywheres near full so I spend a lot of time in the bathroom.  It can be daunting but it beats the alternative.


Hi NY, thanks for the reply.  I've given up on actually having a "meal" in the traditional sense since it's just no fun for me.  It's hard for my friends and especially my folks to understand that eating is now something I do continuously (i.e., grazing) during the day (and mostly at night) instead of sitting down at three distinct times each day.  Meals are no longer "events" any more. Being Italian, food is central to what my folks talk about each day.  I get a chuckle out of it now because I'm on the outside looking in and no longer part of the discussion.  When my folks come to visit they talk about where we're going to eat lunch while we're eating breakfast. At lunch they're talking about what and where dinner will be....etc, etc.  It's downright comical listening to them, and realizing how important meals are to regular folks.

My friends forget too, but quickly remember when we go out to eat and they see me take a bite or two and then box up the rest to take it home with me. Over the past 4 years, since they short gutted me, I've forced my intestines to adapt significantly and I've figured out the hydration piece of the puzzle, so things are better than they were, but still not acceptable yet to me.  Right now I eat and drink minimally during the day and then increase my intake at night when I'm home.  I hear ya about being careful about eating before bedtime, but my solution is not to have any real bedtime.  I've got my routine to the point where I drink and eat all I want from when I get home from work to about 1:00am.  I then might nod off for an hour at the most and then I rehydrate from 2:30am to 4:00am. Then I go "to bed" until 7:30am and then get up and start the next day.  I need to avoid not having food in my intestines for any significant amount of time or I lose weight, so this weird schedule works for me.

  I'm hoping to pick your brain a little bit to see how you do normal things and enjoy them......like going to the movies or hanging out on a friend's boat.  If you'd rather we talk in private I can PM you.  If you don't mind the rest of the folks reading this.....I'm not shy.  Whatever works for you.

Thanks,

Bob

Reply by ejbetty, on Tue Jul 23, 2019 10:17 am

I have high output. I use immodium and lomotil after meals to help thicken my output. My gastro gave them to me. I have to drink at least 8 full 8oz cups of water (I drink more) daily to avoid dehydration.

So as you can see I have many ideas I have learned in my 5 year experience of high input. If you have any questions please ask.

Betty

Reply by w30bob, on Tue Jul 23, 2019 11:00 am

Hi Guys,

  Yeah, I forgot to mention my meds.  Initially I was taking Diphen-Atropine and Loperimide (Lomotil and Immodium) at a rate of 4 tabs each 4 times per day.........so 16 Diphen an 16 Lopes per day.  Didn't really do much for me.  Now I'm down to each of those drugs twice a day 4 pills each, really just for kicks.  In my case my bowel is so short that motility isn't the problem.....length is.  As an example, right after my operation I could start eating a blue raspberry Italian Ice and before I was done eating it I'd see bright blue in my bag.  Same thing with a can of soda.  I think of it this way, imagine I have an almost 4 ft piece of garden hose.  I line the inside with velvet.  Then I hold it vertical and dump some liquid in the the top of the hose.  How long does it take for the liquid to come out the other side?  That's my intestine in a nutshell.  Now to be fair, it's adapted a bit over time and instead of washing out the food I ate with any liquid I drink the villi and microvilli that line the walls of my intestine have grown and now hold the food even if a liquid goes rushing by.  That's where my experimentation with isotonic fluids (ORS) and the timing of when I drink them really plays a big role.   Looking forward to talking to both of you gals!!

thanks,

bob  

Reply by ejbetty, on Tue Jul 23, 2019 11:36 am
w30bob wrote:

Hi Guys,

  Yeah, I forgot to mention my meds.  Initially I was taking Diphen-Atropine and Loperimide (Lomotil and Immodium) at a rate of 4 tabs each 4 times per day.........so 16 Diphen an 16 Lopes per day.  Didn't really do much for me.  Now I'm down to each of those drugs twice a day 4 pills each, really just for kicks.  In my case my bowel is so short that motility isn't the problem.....length is.  As an example, right after my operation I could start eating a blue raspberry Italian Ice and before I was done eating it I'd see bright blue in my bag.  Same thing with a can of soda.  I think of it this way, imagine I have an almost 4 ft piece of garden hose.  I line the inside with velvet.  Then I hold it vertical and dump some liquid in the the top of the hose.  How long does it take for the liquid to come out the other side?  That's my intestine in a nutshell.  Now to be fair, it's adapted a bit over time and instead of washing out the food I ate with any liquid I drink the villi and microvilli that line the walls of my intestine have grown and now hold the food even if a liquid goes rushing by.  That's where my experimentation with isotonic fluids (ORS) and the timing of when I drink them really plays a big role.   Looking forward to talking to both of you gals!!

thanks,

bob  

Yeah me too! Liqu8go right through me! Red popsicle and there it is! Very quickly. I think the meds do help. Have you ever tried a powdered drink called PREVALITE?  When I am just completely out of contol I use it and it works very well. 

Reply by newyorktorque, on Tue Jul 23, 2019 11:56 am

Im still on Diphen Atropine and Omeprazole.  I dropped the lomotil as that did not seem to do anything.  Yes Bob everything comes out quick in my ostomy world too.  I only have one quarter of my small intestine left.  I can get a rainbow of colors of output from ices to fruit and even jello.  I actually like eating small or mini meals throughout the day.  If I sit down to a full meal (first of all it would take me hours to complete.  I eat slow) I would fall asleep afterwards.  "Knoshing" throught out the day keeps me going without feeling tired.  This is not a new style of eating for me however; when I was body building it was recommended to me and I have eaten this way since then.  I like it.  I can eat more of my favorite foods this way just not as much in one sitting.  After the bodybuilding I went from desk job to airlines where you literally have to eat on the fly if youre a crew member.  So I brought a lot of fruits and veggies with me to snack on.  All this was prior to surgery so I was used to it .                      

I drink ORS too but I never thought the timing would make a difference.  I'll have to experiment with that.  The only adjustment for me....(and I got this from all you guys out there on this site so thank you fellow ostomates) is to CHEW, CHEW and chew some more.  So I try to be concious of that and it does make a difference too. 

Reply by w30bob, on Wed Jul 24, 2019 9:54 am

Hi Guys,

 

  Ej.....never heard of Prevalite.  Just looked it up and it says causes constipation.......so maybe you're on to something.  Tell us what it does for you?  I've tried all the usual Metamucil products, etc and although they do absorb some water they add bulk to my output......so more output.  I need something that makes the water disappear, not just absorb it.  I'm looking into constructing a mechanical evaporator/vaporizer that I can wear on my hip that would just vaporize the liquid as I output it.  I can't see my lifestyle improving much until I can find a way to empty my bag hands-free while I'm doing other things.  But I am curios as to how the Prevalite is working for you?  Side effects?

  NYT....Yeah, I hear ya on the lomotil.  It might be helping me a bit in the morning, but once I get eating the sheer volume of food and the short length of bowel eliminate any help it can provide.  I recently tried Tincture of Opium that my gastro at Hopkins told me would surely do the trick.  Didn't make a bit of difference.  So much for the "experts".  I won't even get started on that topic.  Sounds like you've always done the "grazing" thing, so good for you.  I certainly don't mind it, but it would be nice to be able to sit down to a nice long meal either with family, friends or on a date and not have get up every 15 mintues to use the Boys Room.  Maybe next life.  The timing thing is strange to me too.  But I've found some other holes in Carol's theories on Short Bowel Syndrome.  I assume you guys know about Carol Parish's work.  If not, and for anyone else reading this now or in the future here's the link to Part 2....you'll want to read the other parts as well;

https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/06/Parrish-October-14.pdf

  Carol's work is really a life saver and I guess everyone gets a copy of her book when they wake from surgery after being short gutted.  It's available free online and although parts are a tough read you'll come away with the gist of what's important.  Like I said, most of what she says is gospel for us Shorties.  I had a real problem with the ORS/osmolarity info because it's presented as a very specific molarity ratio.......and that didn't make any sense to me.  I knew there had to be a gradient and not a single point for absorption to occur in the semi-permiable membrane.  And I was right.  She needs to make that more clear.  I also found my custom reduced osmolarity ORS worked better for me than the standard World Health Organization ratio, and the one Carol talks to.  Turns out I was right on that too, as WHO has now revised their ORS formulation to what I determined was the proper ratio of glucose and sodium.  The new ratio is much more palatable than the old salt water with sugar disgusting mess of a drink.  If any of what I'm talking about sounds Martian to anyone read my post reply to Tickpol in his forum topic entitled "Gut Not Yet Trained", as I discuss this in more detail there.  The other thing I have a problem with in Carol's work (and bless her heart for taking the time to try to help us short gutters, really) is that since she's not short gutted she can't appreciate some of the things she says and how hard they are to do.  For example, she says matter of factly, limit your drinking, drink 30 minutes after you eat and don't drink more than a couple ounces at a time.  Yeah, right.........like that's gonna happen.  When I came home from the hospital I had an insatiable thirst ALL THE TIME.  It drove me nuts.  And I CRAVED ice cold liquids.  If I so much as took a sip of ice water I had to drink the hole Gatorade bottle full.  I just couldn't stop.  Must be what a cocaine addiction is like.  And all my life I drank WITH my meals, not after.  I couldn't even get the food to go down my throat without something to drink and she's telling me to only drink a half hour after I eat.  So that didn't happen either.  So she means well, but can't appreciate what we have to go thru.  Again, not her fault, but it would have been nice to read something that said "what I'm telling you to do may be extremely hard, even impossible at first, but keep trying to get there".  Maybe I'm being to hard on the gal. 

 But it did teach me something.  The human body is a wonderful biomechanical machine.  Up to a certain age (not there yet but getting close) it can repair itself, within reason.  But it also adapts, and that's the key.  Torque, you mentioned bodybuilding.  In bodybuilding you have to force the muscles to adapt to the strain (by getting bigger).  If you do bicep curls the body says "oh, that's different" and you get sore.  If you do curls every 3rd or 6th day you body says "it's different again, but it's not stopping so I need to adapt to better handle this change" and your muscles grow.  I'm oversimpifying, but you get my gist.  So I used this adaptation to train my gut.  Instead of using the proper ORS exclusively I went the other way.  I drank hypotonic drinks most of the time and only used the ORS when I was getting really dehydrated.  I was telling my body to get used to the hypotonics and adapt if you want to stay hydrated. Over time my hydration improved and I was getting by with almost no ORS in my diet.  This shocked the dieticians and Gastros who I was dealing with.  Now I'm not saying anybody should do what I did, because it probably won't work if you have any less bowel left than I do (i.e., 140cm), but we need to be smart about what's going on with our bodies and not rely solely on the medical "experts" who aren't practicing what they preach.  Wow......this turned out to be a long one and my soapbox is really high.  I better get to work before they fire my ass! So gotta go....but looking forward to talking to you gals.  Thanks for replying

regards,

bob

 

 

Reply by ejbetty, on Wed Jul 24, 2019 10:36 am
w30bob wrote:

Hi Guys,

 

  Ej.....never heard of Prevalite.  Just looked it up and it says causes constipation.......so maybe you're on to something.  Tell us what it does for you?  I've tried all the usual Metamucil products, etc and although they do absorb some water they add bulk to my output......so more output.  I need something that makes the water disappear, not just absorb it.  I'm looking into constructing a mechanical evaporator/vaporizer that I can wear on my hip that would just vaporize the liquid as I output it.  I can't see my lifestyle improving much until I can find a way to empty my bag hands-free while I'm doing other things.  But I am curios as to how the Prevalite is working for you?  Side effects?

  NYT....Yeah, I hear ya on the lomotil.  It might be helping me a bit in the morning, but once I get eating the sheer volume of food and the short length of bowel eliminate any help it can provide.  I recently tried Tincture of Opium that my gastro at Hopkins told me would surely do the trick.  Didn't make a bit of difference.  So much for the "experts".  I won't even get started on that topic.  Sounds like you've always done the "grazing" thing, so good for you.  I certainly don't mind it, but it would be nice to be able to sit down to a nice long meal either with family, friends or on a date and not have get up every 15 mintues to use the Boys Room.  Maybe next life.  The timing thing is strange to me too.  But I've found some other holes in Carol's theories on Short Bowel Syndrome.  I assume you guys know about Carol Parish's work.  If not, and for anyone else reading this now or in the future here's the link to Part 2....you'll want to read the other parts as well;

https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/06/Parrish-October-14.pdf

  Carol's work is really a life saver and I guess everyone gets a copy of her book when they wake from surgery after being short gutted.  It's available free online and although parts are a tough read you'll come away with the gist of what's important.  Like I said, most of what she says is gospel for us Shorties.  I had a real problem with the ORS/osmolarity info because it's presented as a very specific molarity ratio.......and that didn't make any sense to me.  I knew there had to be a gradient and not a single point for absorption to occur in the semi-permiable membrane.  And I was right.  She needs to make that more clear.  I also found my custom reduced osmolarity ORS worked better for me than the standard World Health Organization ratio, and the one Carol talks to.  Turns out I was right on that too, as WHO has now revised their ORS formulation to what I determined was the proper ratio of glucose and sodium.  The new ratio is much more palatable than the old salt water with sugar disgusting mess of a drink.  If any of what I'm talking about sounds Martian to anyone read my post reply to Tickpol in his forum topic entitled "Gut Not Yet Trained", as I discuss this in more detail there.  The other thing I have a problem with in Carol's work (and bless her heart for taking the time to try to help us short gutters, really) is that since she's not short gutted she can't appreciate some of the things she says and how hard they are to do.  For example, she says matter of factly, limit your drinking, drink 30 minutes after you eat and don't drink more than a couple ounces at a time.  Yeah, right.........like that's gonna happen.  When I came home from the hospital I had an insatiable thirst ALL THE TIME.  It drove me nuts.  And I CRAVED ice cold liquids.  If I so much as took a sip of ice water I had to drink the hole Gatorade bottle full.  I just couldn't stop.  Must be what a cocaine addiction is like.  And all my life I drank WITH my meals, not after.  I couldn't even get the food to go down my throat without something to drink and she's telling me to only drink a half hour after I eat.  So that didn't happen either.  So she means well, but can't appreciate what we have to go thru.  Again, not her fault, but it would have been nice to read something that said "what I'm telling you to do may be extremely hard, even impossible at first, but keep trying to get there".  Maybe I'm being to hard on the gal. 

 But it did teach me something.  The human body is a wonderful biomechanical machine.  Up to a certain age (not there yet but getting close) it can repair itself, within reason.  But it also adapts, and that's the key.  Torque, you mentioned bodybuilding.  In bodybuilding you have to force the muscles to adapt to the strain (by getting bigger).  If you do bicep curls the body says "oh, that's different" and you get sore.  If you do curls every 3rd or 6th day you body says "it's different again, but it's not stopping so I need to adapt to better handle this change" and your muscles grow.  I'm oversimpifying, but you get my gist.  So I used this adaptation to train my gut.  Instead of using the proper ORS exclusively I went the other way.  I drank hypotonic drinks most of the time and only used the ORS when I was getting really dehydrated.  I was telling my body to get used to the hypotonics and adapt if you want to stay hydrated. Over time my hydration improved and I was getting by with almost no ORS in my diet.  This shocked the dieticians and Gastros who I was dealing with.  Now I'm not saying anybody should do what I did, because it probably won't work if you have any less bowel left than I do (i.e., 140cm), but we need to be smart about what's going on with our bodies and not rely solely on the medical "experts" who aren't practicing what they preach.  Wow......this turned out to be a long one and my soapbox is really high.  I better get to work before they fire my ass! So gotta go....but looking forward to talking to you gals.  Thanks for replying

regards,

bob

 

 

PREVALITE works for me very well. If I use it and my ostomy doesn'tstop filling and filling and I don't end up dehydrated at the hospital, I  am happy.  I think you should ask your doctor about it.  No side effects at all.

EJ

Reply by w30bob, on Fri Jul 26, 2019 10:30 am

Hi EJ,

  Thanks for the info.  I've added it to my questions list for the next time I see my Gastro and will inquire.  Will probably try it no matter what she says though. 

regards,

bob

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