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Ileostomates: How do you stop the flow temporarily?

Posted by GrammieRed, on Fri Jun 19, 2020 6:30 am

Hi all, I have a high-output ileo (9yrs) and still my biggest issue is stopping the flow long enough to change my appliance. I've tried marshmallows but no luck. 2-3 hours before it's time I don't eat or drink anything but sips of water. If I need to do it after a meal I have to wait at least 5 hours. I'm on painkillers so I also take an extra 1/2 dose and that usually does the trick in combination with the rest.

I don't want to have to take that extra 1/2 dose. I have tried without but no luck. I need some new things to try.

Reply by Padfoot, on Fri Jun 19, 2020 9:09 am

Best to ask your surgeon if meds like Lomotil or Imodium will help slow down output. I use Imodium every day, but I have a colostomy. 

Reply by w30bob, on Fri Jun 19, 2020 10:12 am

Hi Grammie,

  If you have a high output stoma because of what you eat then the answer is simple......only eat stuff that reduces output.  But if you have high output because of reduced bowel length then you have to wait until the bowel is empty.  What I do is track when my bowels are completely empty and output bile in the morning after I get up, and now know exactly when I have a window to change my bag.  I'm extremely short gutted, so my bowels empty fairly quickly and then continue to make bile.  Our bowels typically slow down in the wee hours of the morning, and get back to full speed right after you eat your first meal.  So you simply have to figure out the latest you can eat the night before and be empty when you get up.  For me I have about an hour between bile cycles in the morning, so I typically get up at 7:45am and have a bile output around 8:00am-ish.  I then know I have an hour to change my barrier without any output.  So it's jump in the shower, dry off, change barrier/bag, and like clockwork I'll see bile output around 9:00am again.  

 So you simply need to understand your bowel's natural cycle.  Taking motility meds is tricky.  I've taken them (before I figured out my cycle) before my cycle started and they just extend the time I have bowel output, which really sucks if you're in the middle of a barrier change.  Without the motility meds, if I screw up and have bile output in the middle of a barrier change I can just wait it out over the sink and in about 10 minutes it stops.  So I always wait until AFTER I see the bile cycle end before taking my motility meds.  It takes about 15 minutes for motility meds to kick in, so I can then start eating right after I finish my barrier change.

 With my high output the morning (when I first get up and understand my cycle) is the only time of the day I can change my barrier.  Now I have changed it in emergencies during the day a few times........but it's not easy or pretty.  It basically involves getting on your hands and knees and having a bucket under you to catch the output as you try to keep the area around your stoma clean enough to get your ring and barrier to stick.  You end up burning thru a lot of supplies and will want to change it again the next morning just to be safe.  So learn your cycle and you won't have any problems changing your barrier on your high output stoma.  If you need me to explain any of this better........just shout!!

regards,

bob

Reply by GrammieRed, on Fri Jun 19, 2020 6:23 pm
w30bob wrote:

Hi Grammie,

  If you have a high output stoma because of what you eat then the answer is simple......only eat stuff that reduces output.  But if you have high output because of reduced bowel length then you have to wait until the bowel is empty.  What I do is track when my bowels are completely empty and output bile in the morning after I get up, and now know exactly when I have a window to change my bag.  I'm extremely short gutted, so my bowels empty fairly quickly and then continue to make bile.  Our bowels typically slow down in the wee hours of the morning, and get back to full speed right after you eat your first meal.  So you simply have to figure out the latest you can eat the night before and be empty when you get up.  For me I have about an hour between bile cycles in the morning, so I typically get up at 7:45am and have a bile output around 8:00am-ish.  I then know I have an hour to change my barrier without any output.  So it's jump in the shower, dry off, change barrier/bag, and like clockwork I'll see bile output around 9:00am again.  

 So you simply need to understand your bowel's natural cycle.  Taking motility meds is tricky.  I've taken them (before I figured out my cycle) before my cycle started and they just extend the time I have bowel output, which really sucks if you're in the middle of a barrier change.  Without the motility meds, if I screw up and have bile output in the middle of a barrier change I can just wait it out over the sink and in about 10 minutes it stops.  So I always wait until AFTER I see the bile cycle end before taking my motility meds.  It takes about 15 minutes for motility meds to kick in, so I can then start eating right after I finish my barrier change.

 With my high output the morning (when I first get up and understand my cycle) is the only time of the day I can change my barrier.  Now I have changed it in emergencies during the day a few times........but it's not easy or pretty.  It basically involves getting on your hands and knees and having a bucket under you to catch the output as you try to keep the area around your stoma clean enough to get your ring and barrier to stick.  You end up burning thru a lot of supplies and will want to change it again the next morning just to be safe.  So learn your cycle and you won't have any problems changing your barrier on your high output stoma.  If you need me to explain any of this better........just shout!!

regards,

bob


Hi Bob. That is close to what I'm doing now. Unless an 'emergency' pops up I always change it in the morning.

I don't have much bowel left, either. I know that morning is the best time and I never eat until after the change. I have seen the bile, of course but never noticed it stop on it's own. Didn't realize there might be a window there. How stupid was I?

I am going to pay closer attention and get to know my cycle better. You have opened my eyes. Thank you. :)

Reply by royalrosepdx, on Fri Jun 19, 2020 10:00 pm

I eat cherries, lots of chocolate or gummies gelatin based or olives. Sometimes all of that in one day. I won't have any stoppage for a couple hours but as soon as I notice nothing for 10 minutes I can comfortably change my bag. I have high output mainly overnight sometimes I grt a break mid day between 1-3 pm for whatever reason things are slow for me or around 10pm. Otherwise my trick is opiates too, Doctors hate to hear it but it slows things down a bit, just science. What else can you do at times? So try cherries that has helped at least thickened up my stool. Good luck.

Reply by w30bob, on Fri Jun 19, 2020 11:07 pm
royalrosepdx wrote:

I eat cherries, lots of chocolate or gummies gelatin based or olives. Sometimes all of that in one day. I won't have any stoppage for a couple hours but as soon as I notice nothing for 10 minutes I can comfortably change my bag. I have high output mainly overnight sometimes I grt a break mid day between 1-3 pm for whatever reason things are slow for me or around 10pm. Otherwise my trick is opiates too, Doctors hate to hear it but it slows things down a bit, just science. What else can you do at times? So try cherries that has helped at least thickened up my stool. Good luck.


Hi royal,

  Experimentation is the key to living with any condition, so by all means what you suggest should be tried.  The problem I'd expect to see (and it happens to me every time) is that when you're short gutted or only have a small portion of your bowel left you have to be careful about how much sugar (in fruit that's sucrose, fructose and glucose) you consume...or you will INCREASE your output, not reduce it.  The quick version of that goes like this.  In a normal small bowel and colon the small bowel pulls water from your body to help dilute and digest what your stomach has released into the bowel.  What primarily causes the fluid to be pulled from your body and dumped into your small bowel is sugar (glucose).  All this liquid that's pulled in is then re-absorbed back into your body later in the digestive tract primarily by your lower small bowel (ileum) and your colon (large intestine).  When those two parts of your bowel have been removed there's nothing to re-absorb the liquid and the upper parts of the small bowel that are dumping all that liquid don't know the lower parts are no longer there.........so you get a LOT more output from your stoma.  You can partially correct that by also eating sodium (salt) with your sugar, but that's another story.  So whereas the fiber in cherries helps YOU slow down your output, it's probably because you have some of the parts of your bowel left that do that re-absorption.  Sounds like Grammie might be like me and may not have those parts.  Again, it never hurts to experiment......I'm just giving folks a little heads-up.  

 

regards,

bob

Reply by GrammieRed, on Sat Jun 20, 2020 5:55 am
royalrosepdx wrote:

I eat cherries, lots of chocolate or gummies gelatin based or olives. Sometimes all of that in one day. I won't have any stoppage for a couple hours but as soon as I notice nothing for 10 minutes I can comfortably change my bag. I have high output mainly overnight sometimes I grt a break mid day between 1-3 pm for whatever reason things are slow for me or around 10pm. Otherwise my trick is opiates too, Doctors hate to hear it but it slows things down a bit, just science. What else can you do at times? So try cherries that has helped at least thickened up my stool. Good luck.


Thank you royalrose. I'll give the cherries a try. Funny, we got some just a couple days ago for the 1st time in a while. I only had a few because I need to stay away from raw fruits & veggies. However, I am willing to give it a go. I do love cherries.

Reply by GrammieRed, on Sat Jun 20, 2020 8:20 am
royalrosepdx wrote:

I eat cherries, lots of chocolate or gummies gelatin based or olives. Sometimes all of that in one day. I won't have any stoppage for a couple hours but as soon as I notice nothing for 10 minutes I can comfortably change my bag. I have high output mainly overnight sometimes I grt a break mid day between 1-3 pm for whatever reason things are slow for me or around 10pm. Otherwise my trick is opiates too, Doctors hate to hear it but it slows things down a bit, just science. What else can you do at times? So try cherries that has helped at least thickened up my stool. Good luck.


Hi again Royal. Here are some other things I've tried (besides marshmallows) along with only mornings, only water, etc which I always do before beginning.

About 10 min before starting I've tried bananas, bread, potato chips, yogurt, not breathing, standing on my head, cursing, begging, crying, bribing, threatening ... all to no avail. My stoma is deaf. Hmmmm... I haven't tried sign language yet ... well ... not the reasonable kind anyway. 😉

Reply by ron in mich, on Sat Jun 20, 2020 9:33 am

Hi Grammiered i dont eat or drink anything before i change my system in the morning as that wakes up the bowel and gets it moving and if you start to change then you get output.

Reply by GrammieRed, on Sat Jun 20, 2020 11:01 am
ron in mich wrote:

Hi Grammiered i dont eat or drink anything before i change my system in the morning as that wakes up the bowel and gets it moving and if you start to change then you get output.


Hi Ron, I don't eat beforehand but I do take sips of water, enough to keep me hydrated until after changing when I can go back to drinking my normal amount.

Reply by royalrosepdx, on Sat Jun 20, 2020 3:18 pm
w30bob wrote:

royalrosepdx wrote:I have a short bowel too. No Large intestine for 17 years and I had more disease cut out after a J pouch in my small intestine two years ago now a permanent ileostomy after Having J pouch for 15 years. it is true that everyone should experiment. Let them decide and don't criticize others advice thsnk you. I do show on my list from surgery 2 years ago that cherries is one of the fruits or approved fruits  we can have. My dietician says to boil fruit first BTW. Cherries, olives nor chocolate works  100% of the time nothing does with an ileostomy. But for this case I told him that I try multiple things in a day if I'm having a particularly bad output day and I need to change my pouch, then yes a few cherries for me helps most times. I'm putting the suggestion out there since it could help somene. I am aware of having too much sugar from fruit can cause more output. I learned that the hard way by indulging in the evening time and then was not able to go to bed, from getting up to empty all night. 

P.S. More often than not, I don't agree with your advice.

I eat cherries, lots of chocolate or gummies gelatin based or olives. Sometimes all of that in one day. I won't have any stoppage for a couple hours but as soon as I notice nothing for 10 minutes I can comfortably change my bag. I have high output mainly overnight sometimes I grt a break mid day between 1-3 pm for whatever reason things are slow for me or around 10pm. Otherwise my trick is opiates too, Doctors hate to hear it but it slows things down a bit, just science. What else can you do at times? So try cherries that has helped at least thickened up my stool. Good luck.


Hi royal,

  Experimentation is the key to living with any condition, so by all means what you suggest should be tried.  The problem I'd expect to see (and it happens to me every time) is that when you're short gutted or only have a small portion of your bowel left you have to be careful about how much sugar (in fruit that's sucrose, fructose and glucose) you consume...or you will INCREASE your output, not reduce it.  The quick version of that goes like this.  In a normal small bowel and colon the small bowel pulls water from your body to help dilute and digest what your stomach has released into the bowel.  What primarily causes the fluid to be pulled from your body and dumped into your small bowel is sugar (glucose).  All this liquid that's pulled in is then re-absorbed back into your body later in the digestive tract primarily by your lower small bowel (ileum) and your colon (large intestine).  When those two parts of your bowel have been removed there's nothing to re-absorb the liquid and the upper parts of the small bowel that are dumping all that liquid don't know the lower parts are no longer there.........so you get a LOT more output from your stoma.  You can partially correct that by also eating sodium (salt) with your sugar, but that's another story.  So whereas the fiber in cherries helps YOU slow down your output, it's probably because you have some of the parts of your bowel left that do that re-absorption.  Sounds like Grammie might be like me and may not have those parts.  Again, it never hurts to experiment......I'm just giving folks a little heads-up.  

 

regards,

bob



Reply by royalrosepdx, on Sat Jun 20, 2020 3:22 pm
GrammieRed wrote:

royalrosepdx wrote: boil them first. Maybe your intuition was on point. Stick with your intuition staying intune with your body is kind. 

Good luck!

I eat cherries, lots of chocolate or gummies gelatin based or olives. Sometimes all of that in one day. I won't have any stoppage for a couple hours but as soon as I notice nothing for 10 minutes I can comfortably change my bag. I have high output mainly overnight sometimes I grt a break mid day between 1-3 pm for whatever reason things are slow for me or around 10pm. Otherwise my trick is opiates too, Doctors hate to hear it but it slows things down a bit, just science. What else can you do at times? So try cherries that has helped at least thickened up my stool. Good luck.


Thank you royalrose. I'll give the cherries a try. Funny, we got some just a couple days ago for the 1st time in a while. I only had a few because I need to stay away from raw fruits & veggies. However, I am willing to give it a go. I do love cherries.



Reply by w30bob, on Sun Jun 21, 2020 12:20 pm
royalrosepdx wrote:

P.S. More often than not, I don't agree with your advice.




Hi royal,

  I almost missed that one!  Wow.....tough crowd.  I take it then that you're not going to be applying for the "W30bob Fan Club" Vice President job anytime soon, eh?  That's ok.......but I do appreciate your candor!  It gets boring getting all those "likes" every time I post something on here......so good for you!  But that's the cool thing about forums.......people share their experiences and advice and the poster (and the audience) gets to choose.  Oh, the next Fan Club meeting is in August (COVID permitting).......if you change your mind and want to swing by you're always welcome.  You take care.

regards,

bob   

Reply by GrammieRed, on Sun Jun 21, 2020 1:55 pm
w30bob wrote:
royalrosepdx wrote:

P.S. More often than not, I don't agree with your advice.




Hi royal,

  I almost missed that one!  Wow.....tough crowd.  I take it then that you're not going to be applying for the "W30bob Fan Club" Vice President job anytime soon, eh?  That's ok.......but I do appreciate your candor!  It gets boring getting all those "likes" every time I post something on here......so good for you!  But that's the cool thing about forums.......people share their experiences and advice and the poster (and the audience) gets to choose.  Oh, the next Fan Club meeting is in August (COVID permitting).......if you change your mind and want to swing by you're always welcome.  You take care.

regards,

bob   

Hahaha.  You guys kill me. 😂

Reply by Ettie, on Sun Jun 21, 2020 10:06 pm
GrammieRed wrote:
w30bob wrote:

Hi Grammie,

  If you have a high output stoma because of what you eat then the answer is simple......only eat stuff that reduces output.  But if you have high output because of reduced bowel length then you have to wait until the bowel is empty.  What I do is track when my bowels are completely empty and output bile in the morning after I get up, and now know exactly when I have a window to change my bag.  I'm extremely short gutted, so my bowels empty fairly quickly and then continue to make bile.  Our bowels typically slow down in the wee hours of the morning, and get back to full speed right after you eat your first meal.  So you simply have to figure out the latest you can eat the night before and be empty when you get up.  For me I have about an hour between bile cycles in the morning, so I typically get up at 7:45am and have a bile output around 8:00am-ish.  I then know I have an hour to change my barrier without any output.  So it's jump in the shower, dry off, change barrier/bag, and like clockwork I'll see bile output around 9:00am again.  

 So you simply need to understand your bowel's natural cycle.  Taking motility meds is tricky.  I've taken them (before I figured out my cycle) before my cycle started and they just extend the time I have bowel output, which really sucks if you're in the middle of a barrier change.  Without the motility meds, if I screw up and have bile output in the middle of a barrier change I can just wait it out over the sink and in about 10 minutes it stops.  So I always wait until AFTER I see the bile cycle end before taking my motility meds.  It takes about 15 minutes for motility meds to kick in, so I can then start eating right after I finish my barrier change.

 With my high output the morning (when I first get up and understand my cycle) is the only time of the day I can change my barrier.  Now I have changed it in emergencies during the day a few times........but it's not easy or pretty.  It basically involves getting on your hands and knees and having a bucket under you to catch the output as you try to keep the area around your stoma clean enough to get your ring and barrier to stick.  You end up burning thru a lot of supplies and will want to change it again the next morning just to be safe.  So learn your cycle and you won't have any problems changing your barrier on your high output stoma.  If you need me to explain any of this better........just shout!!

regards,

bob


Hi Bob. That is close to what I'm doing now. Unless an 'emergency' pops up I always change it in the morning.

I don't have much bowel left, either. I know that morning is the best time and I never eat until after the change. I have seen the bile, of course but never noticed it stop on it's own. Didn't realize there might be a window there. How stupid was I?

I am going to pay closer attention and get to know my cycle better. You have opened my eyes. Thank you. :)      

 

 

Hi w30bob, I am curious to know if you have a gall bladder and if so if this helps with the bile cycle. I do not have one and so I am constantly flooded with bile and this makes it tricky to find those no output times for changing. I also get worried about what the constant flow of bile may be doing to my insides but thats another topic.

Kind Regards 

Ettie



Reply by Maried, on Thu Jun 25, 2020 10:17 am
GrammieRed wrote:
w30bob wrote:
royalrosepdx wrote:

P.S. More often than not, I don't agree with your advice.




Hi royal,

  I almost missed that one!  Wow.....tough crowd.  I take it then that you're not going to be applying for the "W30bob Fan Club" Vice President job anytime soon, eh?  That's ok.......but I do appreciate your candor!  It gets boring getting all those "likes" every time I post something on here......so good for you!  But that's the cool thing about forums.......people share their experiences and advice and the poster (and the audience) gets to choose.  Oh, the next Fan Club meeting is in August (COVID permitting).......if you change your mind and want to swing by you're always welcome.  You take care.

regards,

bob   

Hahaha.  You guys kill me. 😂

Without opinions or suggestions of other people this site would be nothing and the statement above stating you do not agree with most of Bob's advise .. that is negative feedback ..how is that helpful to anyone.. others may not post when they see these type of messages. .. be nice.

Reply by Padfoot, on Thu Jun 25, 2020 1:41 pm
Maried wrote:
GrammieRed wrote:
w30bob wrote:
royalrosepdx wrote:

P.S. More often than not, I don't agree with your advice.




Hi royal,

  I almost missed that one!  Wow.....tough crowd.  I take it then that you're not going to be applying for the "W30bob Fan Club" Vice President job anytime soon, eh?  That's ok.......but I do appreciate your candor!  It gets boring getting all those "likes" every time I post something on here......so good for you!  But that's the cool thing about forums.......people share their experiences and advice and the poster (and the audience) gets to choose.  Oh, the next Fan Club meeting is in August (COVID permitting).......if you change your mind and want to swing by you're always welcome.  You take care.

regards,

bob   

Hahaha.  You guys kill me. 😂

Without opinions or suggestions of other people this site would be nothing and the statement above stating you do not agree with most of Bob's advise .. that is negative feedback ..how is that helpful to anyone.. others may not post when they see these type of messages. .. be nice.

I agree that this site is only as good as the suggestions that people bring to it, however, I also feel that it is important to allow for dissent, as long as it is expressed in a respectful manner.  I have disagreed from time to time with opinions expressed by others here; I hope that I haven't done it in a way that brings discredit to myself. Sometimes, informal writing doesn't get the message across very well - I have certainly been guilty of trying to be funny in an email that was misinterpreted in a way that I didn't intend. I have learned to be more careful about how I express myself in writing as a result. I am hoping that RoyalRose simply meant that Bob's advice doesn't always work for her. I have read Bob's advice on this topic, and I believe that he was simply sharing an opinion that he believed might be helpful, however, he did make it clear that his experience might not be everyone else's experience. It's hard to find fault with that. In fact, that is a recurring theme on this site - that everyone struggles to find what works best for their own unique situation - isn't that why we're on this site? 


We are all human beings, trying to find answers to the less than ideal situation in which we find ourselves. We need to feel safe asking questions and posting opinions. For that to happen, we all need to think carefully before we hit "send". Myself included.

 

 

Reply by dadnabbit, on Mon Jun 29, 2020 12:13 am

Grammie, I too have a high output ileostomy.  I have not discovered any way other than to control my eating times and showering times to change without output.  Food passes through our systems roughly 5-8 hours after we injest it, depending WHAT you eat.   I eat daily before 4 pm, and in the morning I am able to shower and change without much trouble from output..  If I eat first, the output starts up immediately and I have to put off my shower for about 2 hours to avoid output.  Everyone's system is different, and our eating habits have trained our bodies when to react. Different types of food cause different reactions and reaction times.  You have to pay attention to how YOUR body reacts and once you recognize how different foods digest for you, you'll be better able to judge when you will have a slower output time.  It is rare that I have had a problem since using this intermittent fasting way of eating. 

PEACE

Nancy

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