People Giving Advice
Kim
Comments
-
jelloy isn't a word?
Could have fooled me. I know what you mean, some days it seems all i think about is will i have a good bm today? Thank fully I haven't had an ostomy, so haven't had to deal with those issues, but since my procedure a year ago and all the infection, I really have to spend a lot of time managing my bowels; they just don't like all the scarring, etc from all the infections. Heaven forbid I forget to take my Reglan! It is hard to keep getting advice from those who don't know what they're talking about (or should I say it's hard to keep ignoring it?!). I sure hope you land on something that helps you make some peace with your behind! You talk about it being hard to give up veges ... are you thinking they might be causing you some of your grief? A lot of gas or loose stool? I find dried fruit is the magic bullet for getting things going without stimulants, and with a little trial and error the amount of dried fruit can be pretty easy to hit upon. It's like prunes, 5 is going to be too much, but 3 or 4 can hit the spot directly! Raisins, craisins and dried apricots do the trick as well. If I've had a particularly bad couple of days of eating or whatever, miralax works pretty darn well for me without feeling that I've used a stimulant; it just softens everything and makes it easy to pass. Now there I've gone and given you advice and I know you weren't looking for it, but I never mind if people ignore my advice I sure hope you have a great night and a better tomorrow, Kim!
mary0 -
Kim
What finally helped me after my reversal was when I started using flax seed fiber. Just a teaspoon a day to start, then you can increase to tablespoons as tolerate. I just put mine in water and kind of drink/chew it. But it tastes good and can put in yogurt, on salads, cook with and so on. A nutritionist got me to try it, and within 4 days to a week was having "normal" stool daily. I was having so much loose stool and agony with hemorrhoids for a few years after my reversal, after starting on the flax, what relief. I like it because it is something that is totally natural, the brand I use is full of omega 3 also. Hope you can get where you want to be as soon as possible.
Pam0 -
KimPamPam2 said:Kim
What finally helped me after my reversal was when I started using flax seed fiber. Just a teaspoon a day to start, then you can increase to tablespoons as tolerate. I just put mine in water and kind of drink/chew it. But it tastes good and can put in yogurt, on salads, cook with and so on. A nutritionist got me to try it, and within 4 days to a week was having "normal" stool daily. I was having so much loose stool and agony with hemorrhoids for a few years after my reversal, after starting on the flax, what relief. I like it because it is something that is totally natural, the brand I use is full of omega 3 also. Hope you can get where you want to be as soon as possible.
Pam
Oh my. I hope my last post wasn't just more advise to drive you crazy too! It's just what first came into my head, as I had similar issues for so long. I found that the vegetables were not the culprits for me-too much meat and dairy is very hard on my digestion and will cause problems. I didn't really have too many people trying to give me advise, probably because I did not discuss things with them, but I did talk with a very good nutritionist who gave me a lot of good ideas.
Pam0 -
This comment has been removed by the ModeratorPamPam2 said:Kim
Oh my. I hope my last post wasn't just more advise to drive you crazy too! It's just what first came into my head, as I had similar issues for so long. I found that the vegetables were not the culprits for me-too much meat and dairy is very hard on my digestion and will cause problems. I didn't really have too many people trying to give me advise, probably because I did not discuss things with them, but I did talk with a very good nutritionist who gave me a lot of good ideas.
Pam0 -
Dearest, Kim:)
I know you've lost a little zip in your step since the reversal. I can feel your frustration. I know you want to be done with it.
Those type of surgeries are like a bomb going off on our insides - we are the ones left behind to pick up all the pieces when the surgery is done and we are back home.
You're somewhere about 6-8 months out of surgery, right?
I think it's a good idea to cut all of the "supplemental helpers" out as well. What I found worked for me was to just discontinue everything and just "ride it out." I got tired of taking stuff that would jerk my body one way and then take something else to jerk it back the other way - how was I going to get well?
So, I just discontinued. And I also found that eating the good stuff they tell you to, fruits and vegetables, good soups and stuff like that, went through me like a hot knife through butter. It felt like it made it worse. So, I stayed with bland stuff and what I thought was more easily digestible things hoping it would help.
Honestly though, I could eat an ice cube and it felt like I was passing a Chrysler:)
Just seemed not to matter what I did. The bottom line is that when they "jack with the plumbing" and try to put Humpty Dumpty back together again, it is never as easy as "Plug and Play."
The bowel just needs time - alot of time to relearn what to do. As I said, it's been jerked this way with the ileo - and then thrown back the other way with the reversal. Sort of like driving down the highway with your car in D(rive) and then throwing it into R(everse). We'd drop the transmission.
While mine was not a temporary procedure, the tumor was so low that a colostomy for me was certainly an option, but we just missed it. And I've paid a terrible price for that with not only sickness, but years removed from my life recovering it.
It was the first 2-years right off the top for me - all I could do was go to work and maybe the store and home - and an "adventure" could happen at any moment. I'd be up at all hours of the night over and over - lots of time between 3am-6am - sometimes would never make it back to bed, just took shower and went to work and hoped I could make it.
It wore me out and this was the period where I was thinking "If this is all there is - I don't want to go on anymore." And I meant it.
It took years 3 and 4 to finally adjust to a level, that was going to be as normal as I could hope for. By year 5, I was stable enough again, but things can still turn on a dime - like last night, LOL:)
We just don't have all of our original equipment anymore and we needed it all in the first place, so when parts of that are removed, we've got to get used to the "new us."
I know you don't want to hear me tell you this - and I hope it certainly does not take that long, but I only tell you from my side of it, because I care about you, and if the time does drag on, you'll know there was another person you know that this happened too - and you'll know you were not alone, and that it was not unusual.
I'm a patient person and I know folks don't want to hear, but it's TIME - and sometimes more time. The calendar has to roll and one day you are going to look behind and know this was a rough chapter in your life, but I know it will get behind you one day.
The good news is that at least you are learning what your body is telling you and you know how and where to avoid the hot spots and be in a position when things come a calling in the night.
I know it seems like it will never end, but the majority of it will pass. And then, you will always have those occasional spells like I've had the past several weeks - the reminder of what you've been through.
But just ride them out if you can - as you said I think taking too many supplements can create an issue. Eat small portions and don't stuff yourself right now - you pay for those, LOL:)
I'm wishing you the best - you know how I like to keep it real with you. You're so special to me and I've been thinking back to the many wonderful conversations we've had in the past. Thank you so much for your post - it is very comforting to see you back here on the board posting.
-Craig0 -
It will feel natural VERY soon!!!
it just takes awhile. Be patient. I know that's hard...and something you may or may not want to hear....but it's what I found after my J-pouch procedure, 5+ years ago.
I have poohing down to once a day, in the evening...I don't take any medicine to help or restrict BM's, unless I've had diarreha for more that 5 hours. Then it's one, and one only, Immodium. AND the BRAT diet. Otherwise, I control with foods...cheese and banannas to firm, fresh fruit and spinach and water to loosen. I have come to know my body very well, but, as I said, it took awhile. Geez, I found out during that period that I was lactose intollerant!!!
The bowel is the touchiest organ as far as reaction when messed with. And, like an elephant, it always remembers...
I'm sending big hugs along....normal WILL come, just slowly. Just one piece of advice: Don't rush it like a patient partner of mine did: he went camping and ate an entire package of jerky...poohed all the way down the hill! (and called ME for sympathy...lol...I was in a meeting...had to excuse myself to avoid offending anyone in the room with 'potty talk')!
Hugs, Kathi0 -
no advice here
I Will not offer advice but do you mind if I share your rant? I myself am so DAMN tired of going to the bathroom. If I eat a meal within a half an hour to an hour I am parked on the thrown. Depending on what it is and if I am active at all it takes less time.
Mornings for me are the worst. I wake up because, you guessed it, I need to go to the bathroom. Now granted I have made it about 8 hours without going but I pay for that. I go, and within an hour Im going again, mind you I havent eaten anything yet becasue I know what is coming. after this second round I will have at least one or two more. These will be very loose and cause mild cramping and at times (although thankfully this part hasn't happened as much lately) my stomach will get queasy and things start trying to come up. My stomach is still empty so nothing really moves, like having dry heaves.
I realize after the last four years the fact that I am here should be enough. Most of the time it is, but I sure hate my morning routine.
I gave up smoking about a year ago. back then I never went anywhere or did anything without knowing where my smokes were. Now its the same thing only with bathrooms.
I had my last surgery 15 months ago. I was told the type of surgery I had takes up to two years to fully recover from, things have certainly gotten better but they are far from what I would like them to be.
I wont offer advice, I have tried alot of combinations, and listened to countless suggestions myself.
the following does not relate to this board:
I believe I have heard some of the most hairbrained schemes you could imagine. The zanier ones all coming from people who dont have a clue, but they always seem to "know someone" or "had a friend that"... I am pretty sure if I had followed all of that advice I would now be eating 'fish soup everday'(no I didnt ask what type of fish?!), drinking a tea concoction made up of cinnamon, lemon grass, a teaspoon of protein powder and something I cant pronounce or find its origin, while soaking in a tub of eucalyptus leaves, my head annointed with grease from a polar bear, while I burned incence and chanted in some dead language.
but back to you, I am sorry for your discomfort and I can relate. I am hoping that for me things are still improving. I can tell you that they were right in my case about the two year recovery. I guess Cancer itself is quick, everything else we deal with is SLOOOOOOOOOOOOW!
Take care, I hope this finds ya smilin, and next time someone "offers you" some advice remember it could be worse you could have polar bear grease on your head while eating fish soup.
Chris0 -
Postgreybeard said:no advice here
I Will not offer advice but do you mind if I share your rant? I myself am so DAMN tired of going to the bathroom. If I eat a meal within a half an hour to an hour I am parked on the thrown. Depending on what it is and if I am active at all it takes less time.
Mornings for me are the worst. I wake up because, you guessed it, I need to go to the bathroom. Now granted I have made it about 8 hours without going but I pay for that. I go, and within an hour Im going again, mind you I havent eaten anything yet becasue I know what is coming. after this second round I will have at least one or two more. These will be very loose and cause mild cramping and at times (although thankfully this part hasn't happened as much lately) my stomach will get queasy and things start trying to come up. My stomach is still empty so nothing really moves, like having dry heaves.
I realize after the last four years the fact that I am here should be enough. Most of the time it is, but I sure hate my morning routine.
I gave up smoking about a year ago. back then I never went anywhere or did anything without knowing where my smokes were. Now its the same thing only with bathrooms.
I had my last surgery 15 months ago. I was told the type of surgery I had takes up to two years to fully recover from, things have certainly gotten better but they are far from what I would like them to be.
I wont offer advice, I have tried alot of combinations, and listened to countless suggestions myself.
the following does not relate to this board:
I believe I have heard some of the most hairbrained schemes you could imagine. The zanier ones all coming from people who dont have a clue, but they always seem to "know someone" or "had a friend that"... I am pretty sure if I had followed all of that advice I would now be eating 'fish soup everday'(no I didnt ask what type of fish?!), drinking a tea concoction made up of cinnamon, lemon grass, a teaspoon of protein powder and something I cant pronounce or find its origin, while soaking in a tub of eucalyptus leaves, my head annointed with grease from a polar bear, while I burned incence and chanted in some dead language.
but back to you, I am sorry for your discomfort and I can relate. I am hoping that for me things are still improving. I can tell you that they were right in my case about the two year recovery. I guess Cancer itself is quick, everything else we deal with is SLOOOOOOOOOOOOW!
Take care, I hope this finds ya smilin, and next time someone "offers you" some advice remember it could be worse you could have polar bear grease on your head while eating fish soup.
Chris
Your post was so hitting home. I love reading what you write and you are so inspirational. you give great advice and thank you for that and give me more, more, more. You feel what it is going on. I'll get there slowly but so slowly. Love the advice though, on this board that is what is needed. Help from all of you is so very welcome.
Kim0 -
Your Wonderful AdviceSundanceh said:Dearest, Kim:)
I know you've lost a little zip in your step since the reversal. I can feel your frustration. I know you want to be done with it.
Those type of surgeries are like a bomb going off on our insides - we are the ones left behind to pick up all the pieces when the surgery is done and we are back home.
You're somewhere about 6-8 months out of surgery, right?
I think it's a good idea to cut all of the "supplemental helpers" out as well. What I found worked for me was to just discontinue everything and just "ride it out." I got tired of taking stuff that would jerk my body one way and then take something else to jerk it back the other way - how was I going to get well?
So, I just discontinued. And I also found that eating the good stuff they tell you to, fruits and vegetables, good soups and stuff like that, went through me like a hot knife through butter. It felt like it made it worse. So, I stayed with bland stuff and what I thought was more easily digestible things hoping it would help.
Honestly though, I could eat an ice cube and it felt like I was passing a Chrysler:)
Just seemed not to matter what I did. The bottom line is that when they "jack with the plumbing" and try to put Humpty Dumpty back together again, it is never as easy as "Plug and Play."
The bowel just needs time - alot of time to relearn what to do. As I said, it's been jerked this way with the ileo - and then thrown back the other way with the reversal. Sort of like driving down the highway with your car in D(rive) and then throwing it into R(everse). We'd drop the transmission.
While mine was not a temporary procedure, the tumor was so low that a colostomy for me was certainly an option, but we just missed it. And I've paid a terrible price for that with not only sickness, but years removed from my life recovering it.
It was the first 2-years right off the top for me - all I could do was go to work and maybe the store and home - and an "adventure" could happen at any moment. I'd be up at all hours of the night over and over - lots of time between 3am-6am - sometimes would never make it back to bed, just took shower and went to work and hoped I could make it.
It wore me out and this was the period where I was thinking "If this is all there is - I don't want to go on anymore." And I meant it.
It took years 3 and 4 to finally adjust to a level, that was going to be as normal as I could hope for. By year 5, I was stable enough again, but things can still turn on a dime - like last night, LOL:)
We just don't have all of our original equipment anymore and we needed it all in the first place, so when parts of that are removed, we've got to get used to the "new us."
I know you don't want to hear me tell you this - and I hope it certainly does not take that long, but I only tell you from my side of it, because I care about you, and if the time does drag on, you'll know there was another person you know that this happened too - and you'll know you were not alone, and that it was not unusual.
I'm a patient person and I know folks don't want to hear, but it's TIME - and sometimes more time. The calendar has to roll and one day you are going to look behind and know this was a rough chapter in your life, but I know it will get behind you one day.
The good news is that at least you are learning what your body is telling you and you know how and where to avoid the hot spots and be in a position when things come a calling in the night.
I know it seems like it will never end, but the majority of it will pass. And then, you will always have those occasional spells like I've had the past several weeks - the reminder of what you've been through.
But just ride them out if you can - as you said I think taking too many supplements can create an issue. Eat small portions and don't stuff yourself right now - you pay for those, LOL:)
I'm wishing you the best - you know how I like to keep it real with you. You're so special to me and I've been thinking back to the many wonderful conversations we've had in the past. Thank you so much for your post - it is very comforting to see you back here on the board posting.
-Craig
Never ever would your advise to me be ever considered anything but heartful and filled with much information. You are the wealth of information and inspiration to me. You, my dear friend, have given me your most blunt information that no one wants to hear but you gave it to me and you made sure that it wasn't sugar coated. You gave it to me the way no one wants to hear but what needed to be said and for that you are always my hero. Thanks, my dear friend.
Kim0 -
Advice
Just wanted to let you all know that your advice is what I came here for. It was all of you that can give me the best advice and that is why you are all so special to me. Don't sugar coat anything, and give it to me, and your experience that you have had. We are a special group of people and your advice is always welcome. No where else would suggestions and experiments and advice be more welcome to me than here. All your advice is welcome to me as you all have gone through this terrible disease. Thanks to all of you for your advice. Keep it coming
Kim0 -
Anyone can give advice,Annabelle41415 said:Advice
Just wanted to let you all know that your advice is what I came here for. It was all of you that can give me the best advice and that is why you are all so special to me. Don't sugar coat anything, and give it to me, and your experience that you have had. We are a special group of people and your advice is always welcome. No where else would suggestions and experiments and advice be more welcome to me than here. All your advice is welcome to me as you all have gone through this terrible disease. Thanks to all of you for your advice. Keep it coming
Kim
but no one says ya gotta follow it...Thats why we all have that little thing called a brain in our heads somewhere.......whats that Latin saying:Buyer Beware (caveat emptor, or something like that)......
Fortunately, however, there are a number of rather wise people on this site whose advise is rather well-advised and worthy of being acted upon.......
steve0 -
thx KimAnnabelle41415 said:Post
Your post was so hitting home. I love reading what you write and you are so inspirational. you give great advice and thank you for that and give me more, more, more. You feel what it is going on. I'll get there slowly but so slowly. Love the advice though, on this board that is what is needed. Help from all of you is so very welcome.
Kim
I am glad I could in some small way help. I worry somethimes that I dont articulate clearly enough what I mean and things can get lost in translation. You and I both agree, this board is full of wonderful people with first hand experience and great insight/advice. My example as I stated was certainly not directed to this board. I hope as always this finds ya smilin' and remember you are never alone. We all have our bad days and our good. I know I came here
(this board) not only to find comfort for myself, but to offer comfort to others who share in this battle. To believe that in some little way I can give to others what at times I know I needed myself, helps me cope, and offers to me, and this may sound strange, but a chance to look at this HORRIBLE thing we call cancer, as a positive in my life. Keep your chin up Kim, remember where you have been, and may the hope of better days never allude you.
chris0 -
you bet!!coloCan said:Anyone can give advice,
but no one says ya gotta follow it...Thats why we all have that little thing called a brain in our heads somewhere.......whats that Latin saying:Buyer Beware (caveat emptor, or something like that)......
Fortunately, however, there are a number of rather wise people on this site whose advise is rather well-advised and worthy of being acted upon.......
steve
I agree Steve, This is certainly the place to look for good advice. Lots of people here who have as they say "been there done that".0 -
PancakingKathiM said:Ok, GOT to ask....
(And, I am NOT making fun...if it's a typo, send me slinking back to my cave...ROFL!)
WHAT the heck is Pancaking??????
Hugs, Kathi
Think that is when you have an ostomy and it just comes out in a pancake in the bag and its very hard to get out (very pasty). Don't think you want it that thick. OK someone correct me or put it another way. An ileostomy (poop) is usually thinner because it comes out of the small intestine so usually don't have pancaking with that. Someone please give a better description
Kim0 -
Pancaking...as Funk,Wagnall, and Buzzard states........Annabelle41415 said:Pancaking
Think that is when you have an ostomy and it just comes out in a pancake in the bag and its very hard to get out (very pasty). Don't think you want it that thick. OK someone correct me or put it another way. An ileostomy (poop) is usually thinner because it comes out of the small intestine so usually don't have pancaking with that. Someone please give a better description
Kim
"Pancaking" as it is is when you have this prosthesis that hangs down and doubles as a change pouch kind of like a tourist would call a fanny pack . It is when your poop is in a semi constipated texture but still seems to get out only to "pile up" at the stoma opening and the pressure of the clothing will flatten it out and cause it to stay right there in the stoma , this is normally where the vent for gases is situated and it sometimes causes the vent to plug with poop and cause the bag to fill up like a hot air ballon...Then you feel like a contestant in the July 4th Hot Air Ballon Race....Yep Illeo is much thinner , liquidy(that a word?) substance and the ostomy especially descending side most of the liquid has been removed so it is much pastier than ascending or illeo....If you want a better description I guess I could take a picture and place it in my avatar but then I most likely would be banned so I think (or Hope) that this description will suffice.....I love ya all....Buzz0 -
So thats what you call the clumping between stoma and plasticBuzzard said:Pancaking...as Funk,Wagnall, and Buzzard states........
"Pancaking" as it is is when you have this prosthesis that hangs down and doubles as a change pouch kind of like a tourist would call a fanny pack . It is when your poop is in a semi constipated texture but still seems to get out only to "pile up" at the stoma opening and the pressure of the clothing will flatten it out and cause it to stay right there in the stoma , this is normally where the vent for gases is situated and it sometimes causes the vent to plug with poop and cause the bag to fill up like a hot air ballon...Then you feel like a contestant in the July 4th Hot Air Ballon Race....Yep Illeo is much thinner , liquidy(that a word?) substance and the ostomy especially descending side most of the liquid has been removed so it is much pastier than ascending or illeo....If you want a better description I guess I could take a picture and place it in my avatar but then I most likely would be banned so I think (or Hope) that this description will suffice.....I love ya all....Buzz
Have that more than I'd like, especially if stoma active while I'm asleep, sitting on bench,walking..Sometimes comes with its own syrup too......End up replacing outer pouch more than I'd like to butt...... steve0 -
A small dab of dawn dishwashing liquid.....coloCan said:So thats what you call the clumping between stoma and plastic
Have that more than I'd like, especially if stoma active while I'm asleep, sitting on bench,walking..Sometimes comes with its own syrup too......End up replacing outer pouch more than I'd like to butt...... steve
around the inner ring after I have attached the adhesive adapter acts as a slide for the pancaking effect and actually allows it to "slide" on down to where it is suppose to be.....
On another note......Well, Im gonna start another thread on this idea because something I do sometimes works for me when Im out...Love to all....Buzz0 -
This comment has been removed by the ModeratorBuzzard said:Pancaking...as Funk,Wagnall, and Buzzard states........
"Pancaking" as it is is when you have this prosthesis that hangs down and doubles as a change pouch kind of like a tourist would call a fanny pack . It is when your poop is in a semi constipated texture but still seems to get out only to "pile up" at the stoma opening and the pressure of the clothing will flatten it out and cause it to stay right there in the stoma , this is normally where the vent for gases is situated and it sometimes causes the vent to plug with poop and cause the bag to fill up like a hot air ballon...Then you feel like a contestant in the July 4th Hot Air Ballon Race....Yep Illeo is much thinner , liquidy(that a word?) substance and the ostomy especially descending side most of the liquid has been removed so it is much pastier than ascending or illeo....If you want a better description I guess I could take a picture and place it in my avatar but then I most likely would be banned so I think (or Hope) that this description will suffice.....I love ya all....Buzz0
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