Hi colt1234,
Welcome to the thread. I'm unable to answer your question per se, but one of my Grandsons was unable to defecate without enemas for the first year of his life. Whether or not he has a tortuous colon we don't know as at this stage he doesn't have ongoing problems. His Dad, my son, also has bowel problems - but manageable.
Bowel problems run in our family and a recent Bowel Transit Study shows that I have an extremely tortuous colon! Many little loops coming off the descending colon causing no end of problems and extreme pain. My surgeon was surprised that it didn't give me problems as a child.
I hope someone that can be of more help comes along🙂
Hi colt1234,
Welcome to the thread. I'm unable to answer your question per se, but one of my Grandsons was unable to defecate without enemas for the first year of his life. Whether or not he has a tortuous colon we don't know as at this stage he doesn't have ongoing problems. His Dad, my son, also has bowel problems - but manageable.
Bowel problems run in our family and a recent Bowel Transit Study shows that I have an extremely tortuous colon! Many little loops coming off the descending colon causing no end of problems and extreme pain. My surgeon was surprised that it didn't give me problems as a child.
I hope someone that can be of more help comes along🙂
Thanks for your reply !
Our son is 5 now and has had this since we started giving him solid foods , before that he was a perfect baby with no bowl movement issues , always been on laxaday , and we’ve tried every diet , gluten free etc . Now we took him to another country since here in Canada the doctors don’t see anything wrong , even though it’s so clear to see he’s got lots of exstra colon twisting etc. in the other country the doctor diagnosed with redundant colon and said he might need surgery to take some away if this stimulating meds he gave did’t work , and sad to say they don’t work ,
You're very welcome, colt🙂. Awe, you poor wee man🥰. Such a problem must be so difficult for him and of course you, his Mum. You obviously have some imaging of his colon. Has he had a Bowel Transit Study done? It's such an inexpensive, easy procedure and those little radiopaques clearly show the problem areas. I think it should be the first test done for anyone with bowel problems.
The only downfall for me not taking laxatives for a week & eating normally, which I can't do well now anyways, created a shift in my loops & I get much worse pain now. My surgeon wants to do a total colectomy, but I want to explore less drastic measures first. He's not very helpful so I'm going elsewhere & having to pay top dollar for a colonoscopy, as I did for a colonography 7 years ago.
I take Molaxole which is the most gentle laxative I've had in the 35 yrs of dealing with this. Laxatives are all very well, but they aren't able to fix the problem.
Do you have a Mayo Clinic near you? They have a very good reputation - even down here in NZ. These forums are the best I've found for sharing information & ideas - wish I'd found them sooner. You may find helpful posts regarding children by using the search function - if you haven't already used it.
I truly hope you can find the best solution for your little boy very soon🥰
You post showed up at a coincidental time. I’ve struggled with constipation my entire life, I’m 64. IBS type symptoms started in 20’s. and worsened over years. Three years ago, bottom dropped out and life has been awful ever since. I’ve had it all, tried it all, seen numerous doctors and nothing works anymore. Too little and I don’t go, add a little and diarrhea. Constant juggling act. Every diagnosis. IBS, slow transit, redundant/tortuous colon, disergenic defecation, pelvic floor, over-sensitive nervous system, anxiety. What difference does it really make what you call it? My colon doesn’t work. So yesterday I see yet another new gi dr. I was cautiously hopeful, but have been let down so many times before. The last one told me she couldn’t help me until I “fixed” my migraines! I was feeling horrible. Had an awful day the day before and didn’t even know if I could make the 3 hr drive. But I waited 4 mths for the apt so if my husband had to carry me, I was going! She was wonderful! Surprisingly young! But she totally got it! Listened to me ramble on, and really listened! Asked if there was ever anything anytime that ever worked and suggested Calm gummies as magnesium is one thing that did work for a while. Thinks maybe my colon needs a rest from all the meds as they aren’t working anyway. And asked if I ever considered a colostomy. I thought that if a dr ever suggested that I’d be so taken back I’d be sick, but I wasn’t. I’d actually made that exact statement to my husband the night before. I was so sick and in so much pain that I said I’d wish they’d just cut it out. She said she’d reviewed my extensive gi history and I’d tried everything out, I’d seen numerous drs, therapies, left no stone unturned. I have no quality of life. I’m physically and mentally worn out. She’s had a number of women just like me who have done this and feel so much better after. Not to say that this isn’t a huge decision. But would I consider a consult with a surgeon who would explain the surgery, recovery, what my life would be like after? In the meantime she will work with me. I can message her. No going thru a nurse or a PA. So I said yes. I’m not certain this is the route I want to go. Quite honestly, I’m terrified! I held it all together until I got home then fell apart that things have gotten so bad that I’m actually considering this. But I’m not even me anymore. I can’t be there for my poor husband of 45 years, my two kids, my 6 grandsons, my two remaining friends. I want a life again and I don’t see this getting any better. Sorry, this has turned into a huge narrative but you guys are the only ones that really get this. Just wondered if any of you ever considered this or had a dr suggest it?
Someone posted a while back about using enemas. If you see this, can you repost and let me know the one you purchased on Amazon? TY. Also, do you use daily or only as needed!
You post showed up at a coincidental time. I’ve struggled with constipation my entire life, I’m 64. IBS type symptoms started in 20’s. and worsened over years. Three years ago, bottom dropped out and life has been awful ever since. I’ve had it all, tried it all, seen numerous doctors and nothing works anymore. Too little and I don’t go, add a little and diarrhea. Constant juggling act. Every diagnosis. IBS, slow transit, redundant/tortuous colon, disergenic defecation, pelvic floor, over-sensitive nervous system, anxiety. What difference does it really make what you call it? My colon doesn’t work. So yesterday I see yet another new gi dr. I was cautiously hopeful, but have been let down so many times before. The last one told me she couldn’t help me until I “fixed” my migraines! I was feeling horrible. Had an awful day the day before and didn’t even know if I could make the 3 hr drive. But I waited 4 mths for the apt so if my husband had to carry me, I was going! She was wonderful! Surprisingly young! But she totally got it! Listened to me ramble on, and really listened! Asked if there was ever anything anytime that ever worked and suggested Calm gummies as magnesium is one thing that did work for a while. Thinks maybe my colon needs a rest from all the meds as they aren’t working anyway. And asked if I ever considered a colostomy. I thought that if a dr ever suggested that I’d be so taken back I’d be sick, but I wasn’t. I’d actually made that exact statement to my husband the night before. I was so sick and in so much pain that I said I’d wish they’d just cut it out. She said she’d reviewed my extensive gi history and I’d tried everything out, I’d seen numerous drs, therapies, left no stone unturned. I have no quality of life. I’m physically and mentally worn out. She’s had a number of women just like me who have done this and feel so much better after. Not to say that this isn’t a huge decision. But would I consider a consult with a surgeon who would explain the surgery, recovery, what my life would be like after? In the meantime she will work with me. I can message her. No going thru a nurse or a PA. So I said yes. I’m not certain this is the route I want to go. Quite honestly, I’m terrified! I held it all together until I got home then fell apart that things have gotten so bad that I’m actually considering this. But I’m not even me anymore. I can’t be there for my poor husband of 45 years, my two kids, my 6 grandsons, my two remaining friends. I want a life again and I don’t see this getting any better. Sorry, this has turned into a huge narrative but you guys are the only ones that really get this. Just wondered if any of you ever considered this or had a dr suggest it?
Very very long story short. I am a 71 year old female. ALL my life I've struggled, been so uncomfortable, felt sick. I learned to live with it,....mostly. After many years I finally learned that I have a tortuous intestine, too big for a person my size (5'2" and about 100 lbs.) I have a very slow transit time as a result. This causes constipation. Nothing really worked for me. Nothing. I just got lucky and had a bowel movement now and then with much discomfort inbetween. FINALLY, on this site, someone recommended Prunelax. It is sold at Walmart over the counter and other drug stores. Probably online also. I started with the mini tabs and I took 4 every evening about 7:30pm. Now I take Prunlax Maximum Relief, 2 1/2 pills each evening. They are larger in size but the dosage is similar. I cut one in half with a pill splitter. I have never felt better in my life. My gastro doctor also reassured me that I could continue taking this. It will eventually change the internal color of the colon due to the senna but it is not harmful. It actually provides the gastro doctor a better picture of the colon if a colonoscopy is done. (Which I personally am done with because it is so risky with my colon with all it's twists and turns. It could be punctured with the colonoscopy. AND I was miserable for days after the procedure. There are other ways to do this procedure.) I have tried everything that the doctors ordered, Miralax, drink lots of water, which I do, fiber, which I do, other products that are normally prescribed. Nothing worked. But Prunelax does. I hope this helps and please pass the word because there has never been one doctor in my entire experience with this situation that recommended it. Best wishes. Jacque
Very very long story short. I am a 71 year old female. ALL my life I've struggled, been so uncomfortable, felt sick. I learned to live with it,....mostly. After many years I finally learned that I have a tortuous intestine, too big for a person my size (5'2" and about 100 lbs.) I have a very slow transit time as a result. This causes constipation. Nothing really worked for me. Nothing. I just got lucky and had a bowel movement now and then with much discomfort inbetween. FINALLY, on this site, someone recommended Prunelax. It is sold at Walmart over the counter and other drug stores. Probably online also. I started with the mini tabs and I took 4 every evening about 7:30pm. Now I take Prunlax Maximum Relief, 2 1/2 pills each evening. They are larger in size but the dosage is similar. I cut one in half with a pill splitter. I have never felt better in my life. My gastro doctor also reassured me that I could continue taking this. It will eventually change the internal color of the colon due to the senna but it is not harmful. It actually provides the gastro doctor a better picture of the colon if a colonoscopy is done. (Which I personally am done with because it is so risky with my colon with all it's twists and turns. It could be punctured with the colonoscopy. AND I was miserable for days after the procedure. There are other ways to do this procedure.) I have tried everything that the doctors ordered, Miralax, drink lots of water, which I do, fiber, which I do, other products that are normally prescribed. Nothing worked. But Prunelax does. I hope this helps and please pass the word because there has never been one doctor in my entire experience with this situation that recommended it. Best wishes. Jacque
Psyllium might help as well because it keeps moisture in the stool as well. I use a heaping tablespoon. And take vitamins to make up for the faster passage and bulkyness,
Very very long story short. I am a 71 year old female. ALL my life I've struggled, been so uncomfortable, felt sick. I learned to live with it,....mostly. After many years I finally learned that I have a tortuous intestine, too big for a person my size (5'2" and about 100 lbs.) I have a very slow transit time as a result. This causes constipation. Nothing really worked for me. Nothing. I just got lucky and had a bowel movement now and then with much discomfort inbetween. FINALLY, on this site, someone recommended Prunelax. It is sold at Walmart over the counter and other drug stores. Probably online also. I started with the mini tabs and I took 4 every evening about 7:30pm. Now I take Prunlax Maximum Relief, 2 1/2 pills each evening. They are larger in size but the dosage is similar. I cut one in half with a pill splitter. I have never felt better in my life. My gastro doctor also reassured me that I could continue taking this. It will eventually change the internal color of the colon due to the senna but it is not harmful. It actually provides the gastro doctor a better picture of the colon if a colonoscopy is done. (Which I personally am done with because it is so risky with my colon with all it's twists and turns. It could be punctured with the colonoscopy. AND I was miserable for days after the procedure. There are other ways to do this procedure.) I have tried everything that the doctors ordered, Miralax, drink lots of water, which I do, fiber, which I do, other products that are normally prescribed. Nothing worked. But Prunelax does. I hope this helps and please pass the word because there has never been one doctor in my entire experience with this situation that recommended it. Best wishes. Jacque
Hi Jacque,
Thanks for sharing your experiences & recommendation of the Prunelax. I'll try and get my hands on some of it asap.
Our stories are similar. I've been trying to get help for 35 years, under surgeons for 11 or 12 years now, and finally last year my second opinion surgeon referred me for a Bowel Transit Study which shows a very tortured colon. The BTS is a very inexpensive procedure which I feel should be the first thing a GP or surgeon referers one suffering from constipation for.
I've wasted thousands of $'s on every diet change, fibre supplement, every type of laxative, anal irrigation and probiotic on the market and had to endure so much pain most of my adult life. I'm both mad and sad that it's taken so long to learn what my problem is😢
I've also just recently had it confirmed that I also have Diverticular, despite me asking about this all these years. My father suffered with terrible episodes of Diverticulitis and was hospitalised many times throughout his adult life.
Long may the Prunelax work for you, Jacques🙂
You post showed up at a coincidental time. I’ve struggled with constipation my entire life, I’m 64. IBS type symptoms started in 20’s. and worsened over years. Three years ago, bottom dropped out and life has been awful ever since. I’ve had it all, tried it all, seen numerous doctors and nothing works anymore. Too little and I don’t go, add a little and diarrhea. Constant juggling act. Every diagnosis. IBS, slow transit, redundant/tortuous colon, disergenic defecation, pelvic floor, over-sensitive nervous system, anxiety. What difference does it really make what you call it? My colon doesn’t work. So yesterday I see yet another new gi dr. I was cautiously hopeful, but have been let down so many times before. The last one told me she couldn’t help me until I “fixed” my migraines! I was feeling horrible. Had an awful day the day before and didn’t even know if I could make the 3 hr drive. But I waited 4 mths for the apt so if my husband had to carry me, I was going! She was wonderful! Surprisingly young! But she totally got it! Listened to me ramble on, and really listened! Asked if there was ever anything anytime that ever worked and suggested Calm gummies as magnesium is one thing that did work for a while. Thinks maybe my colon needs a rest from all the meds as they aren’t working anyway. And asked if I ever considered a colostomy. I thought that if a dr ever suggested that I’d be so taken back I’d be sick, but I wasn’t. I’d actually made that exact statement to my husband the night before. I was so sick and in so much pain that I said I’d wish they’d just cut it out. She said she’d reviewed my extensive gi history and I’d tried everything out, I’d seen numerous drs, therapies, left no stone unturned. I have no quality of life. I’m physically and mentally worn out. She’s had a number of women just like me who have done this and feel so much better after. Not to say that this isn’t a huge decision. But would I consider a consult with a surgeon who would explain the surgery, recovery, what my life would be like after? In the meantime she will work with me. I can message her. No going thru a nurse or a PA. So I said yes. I’m not certain this is the route I want to go. Quite honestly, I’m terrified! I held it all together until I got home then fell apart that things have gotten so bad that I’m actually considering this. But I’m not even me anymore. I can’t be there for my poor husband of 45 years, my two kids, my 6 grandsons, my two remaining friends. I want a life again and I don’t see this getting any better. Sorry, this has turned into a huge narrative but you guys are the only ones that really get this. Just wondered if any of you ever considered this or had a dr suggest it?
Hi Sally,
I'm so pleased you have finally found a clued up Dr!
I'm new to this awesome forum and it seems so many of us share very long histories of terrible pain, loss of quality of life and many misdiagnosis's.
I'm having a colonoscopy soon so I can know the true state of my colons health before having the major surgery that my surgeon has suggested - Total Colectomy with Anastomosis.
My biggest fear of having an anastomosis is of still having dribbly bum & 6 -8 runny poos each day for the rest of my days - of still being housebound and not being able to take part in events if there is no loo! Of still having to use pads almost 24/7!
I feel a stoma may be a better option for me if its possible. Both my surgeon and I will be better equiped to make a decision after my upcoming colonoscopy.
I too want my life back and to enjoy my Grandies, family and friends again!
Allow yourself some time to process what your Dr suggested - it is a major decision so do your research, read other peoples experiences and listen to your gut instinct.
We're in good company here and can learn a lot of each other🙂
Someone posted a while back about using enemas. If you see this, can you repost and let me know the one you purchased on Amazon? TY. Also, do you use daily or only as needed!
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Hi colt1234,
Welcome to the thread. I'm unable to answer your question per se, but one of my Grandsons was unable to defecate without enemas for the first year of his life. Whether or not he has a tortuous colon we don't know as at this stage he doesn't have ongoing problems. His Dad, my son, also has bowel problems - but manageable.
Bowel problems run in our family and a recent Bowel Transit Study shows that I have an extremely tortuous colon! Many little loops coming off the descending colon causing no end of problems and extreme pain. My surgeon was surprised that it didn't give me problems as a child.
I hope someone that can be of more help comes along🙂
Thanks for your reply !
Our son is 5 now and has had this since we started giving him solid foods , before that he was a perfect baby with no bowl movement issues , always been on laxaday , and we’ve tried every diet , gluten free etc . Now we took him to another country since here in Canada the doctors don’t see anything wrong , even though it’s so clear to see he’s got lots of exstra colon twisting etc. in the other country the doctor diagnosed with redundant colon and said he might need surgery to take some away if this stimulating meds he gave did’t work , and sad to say they don’t work ,
-
Like -
Helpful -
Hug
1 ReactionYou're very welcome, colt🙂. Awe, you poor wee man🥰. Such a problem must be so difficult for him and of course you, his Mum. You obviously have some imaging of his colon. Has he had a Bowel Transit Study done? It's such an inexpensive, easy procedure and those little radiopaques clearly show the problem areas. I think it should be the first test done for anyone with bowel problems.
The only downfall for me not taking laxatives for a week & eating normally, which I can't do well now anyways, created a shift in my loops & I get much worse pain now. My surgeon wants to do a total colectomy, but I want to explore less drastic measures first. He's not very helpful so I'm going elsewhere & having to pay top dollar for a colonoscopy, as I did for a colonography 7 years ago.
I take Molaxole which is the most gentle laxative I've had in the 35 yrs of dealing with this. Laxatives are all very well, but they aren't able to fix the problem.
Do you have a Mayo Clinic near you? They have a very good reputation - even down here in NZ. These forums are the best I've found for sharing information & ideas - wish I'd found them sooner. You may find helpful posts regarding children by using the search function - if you haven't already used it.
I truly hope you can find the best solution for your little boy very soon🥰
-
Like -
Helpful -
Hug
1 ReactionYou post showed up at a coincidental time. I’ve struggled with constipation my entire life, I’m 64. IBS type symptoms started in 20’s. and worsened over years. Three years ago, bottom dropped out and life has been awful ever since. I’ve had it all, tried it all, seen numerous doctors and nothing works anymore. Too little and I don’t go, add a little and diarrhea. Constant juggling act. Every diagnosis. IBS, slow transit, redundant/tortuous colon, disergenic defecation, pelvic floor, over-sensitive nervous system, anxiety. What difference does it really make what you call it? My colon doesn’t work. So yesterday I see yet another new gi dr. I was cautiously hopeful, but have been let down so many times before. The last one told me she couldn’t help me until I “fixed” my migraines! I was feeling horrible. Had an awful day the day before and didn’t even know if I could make the 3 hr drive. But I waited 4 mths for the apt so if my husband had to carry me, I was going! She was wonderful! Surprisingly young! But she totally got it! Listened to me ramble on, and really listened! Asked if there was ever anything anytime that ever worked and suggested Calm gummies as magnesium is one thing that did work for a while. Thinks maybe my colon needs a rest from all the meds as they aren’t working anyway. And asked if I ever considered a colostomy. I thought that if a dr ever suggested that I’d be so taken back I’d be sick, but I wasn’t. I’d actually made that exact statement to my husband the night before. I was so sick and in so much pain that I said I’d wish they’d just cut it out. She said she’d reviewed my extensive gi history and I’d tried everything out, I’d seen numerous drs, therapies, left no stone unturned. I have no quality of life. I’m physically and mentally worn out. She’s had a number of women just like me who have done this and feel so much better after. Not to say that this isn’t a huge decision. But would I consider a consult with a surgeon who would explain the surgery, recovery, what my life would be like after? In the meantime she will work with me. I can message her. No going thru a nurse or a PA. So I said yes. I’m not certain this is the route I want to go. Quite honestly, I’m terrified! I held it all together until I got home then fell apart that things have gotten so bad that I’m actually considering this. But I’m not even me anymore. I can’t be there for my poor husband of 45 years, my two kids, my 6 grandsons, my two remaining friends. I want a life again and I don’t see this getting any better. Sorry, this has turned into a huge narrative but you guys are the only ones that really get this. Just wondered if any of you ever considered this or had a dr suggest it?
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Like -
Helpful -
Hug
3 ReactionsSomeone posted a while back about using enemas. If you see this, can you repost and let me know the one you purchased on Amazon? TY. Also, do you use daily or only as needed!
Very very long story short. I am a 71 year old female. ALL my life I've struggled, been so uncomfortable, felt sick. I learned to live with it,....mostly. After many years I finally learned that I have a tortuous intestine, too big for a person my size (5'2" and about 100 lbs.) I have a very slow transit time as a result. This causes constipation. Nothing really worked for me. Nothing. I just got lucky and had a bowel movement now and then with much discomfort inbetween. FINALLY, on this site, someone recommended Prunelax. It is sold at Walmart over the counter and other drug stores. Probably online also. I started with the mini tabs and I took 4 every evening about 7:30pm. Now I take Prunlax Maximum Relief, 2 1/2 pills each evening. They are larger in size but the dosage is similar. I cut one in half with a pill splitter. I have never felt better in my life. My gastro doctor also reassured me that I could continue taking this. It will eventually change the internal color of the colon due to the senna but it is not harmful. It actually provides the gastro doctor a better picture of the colon if a colonoscopy is done. (Which I personally am done with because it is so risky with my colon with all it's twists and turns. It could be punctured with the colonoscopy. AND I was miserable for days after the procedure. There are other ways to do this procedure.) I have tried everything that the doctors ordered, Miralax, drink lots of water, which I do, fiber, which I do, other products that are normally prescribed. Nothing worked. But Prunelax does. I hope this helps and please pass the word because there has never been one doctor in my entire experience with this situation that recommended it. Best wishes. Jacque
-
Like -
Helpful -
Hug
8 ReactionsPsyllium might help as well because it keeps moisture in the stool as well. I use a heaping tablespoon. And take vitamins to make up for the faster passage and bulkyness,
Hi Jacque,
Thanks for sharing your experiences & recommendation of the Prunelax. I'll try and get my hands on some of it asap.
Our stories are similar. I've been trying to get help for 35 years, under surgeons for 11 or 12 years now, and finally last year my second opinion surgeon referred me for a Bowel Transit Study which shows a very tortured colon. The BTS is a very inexpensive procedure which I feel should be the first thing a GP or surgeon referers one suffering from constipation for.
I've wasted thousands of $'s on every diet change, fibre supplement, every type of laxative, anal irrigation and probiotic on the market and had to endure so much pain most of my adult life. I'm both mad and sad that it's taken so long to learn what my problem is😢
I've also just recently had it confirmed that I also have Diverticular, despite me asking about this all these years. My father suffered with terrible episodes of Diverticulitis and was hospitalised many times throughout his adult life.
Long may the Prunelax work for you, Jacques🙂
Hi Sally,
I'm so pleased you have finally found a clued up Dr!
I'm new to this awesome forum and it seems so many of us share very long histories of terrible pain, loss of quality of life and many misdiagnosis's.
I'm having a colonoscopy soon so I can know the true state of my colons health before having the major surgery that my surgeon has suggested - Total Colectomy with Anastomosis.
My biggest fear of having an anastomosis is of still having dribbly bum & 6 -8 runny poos each day for the rest of my days - of still being housebound and not being able to take part in events if there is no loo! Of still having to use pads almost 24/7!
I feel a stoma may be a better option for me if its possible. Both my surgeon and I will be better equiped to make a decision after my upcoming colonoscopy.
I too want my life back and to enjoy my Grandies, family and friends again!
Allow yourself some time to process what your Dr suggested - it is a major decision so do your research, read other peoples experiences and listen to your gut instinct.
We're in good company here and can learn a lot of each other🙂
I've tried many different enema's over the years, Sally and found the Bisacodyl brand to be the gentlest.