A poor diet, high in ultra-processed foods (UPFs), low in fibre, and insufficient water consumption underlies chronic constipation. What can be done about it?
I switched to remove as much of the "low fibre" from my diet - try to go whole grain and unprocessed wherever possible. It doesn't fix the problem of MS gut transit but it doesn't make it worse. There are "fast" alternatives particularly when cooking at home - wholemeal wraps (lightly grilled so they don't go soggy) instead of white bread sandwiches, whole grain rice, leave skins on potatoes cos they're the best bit anyway, that sort of thing. Try to make it convenient to eat healthy.
For the "other end" of things I found laxatives took ages to work and ended up working when I needed to be away from a convenient loo. I was given a Peristeen trans-anal irrigation device to use (which I have dubbed "The Poo-matic") which is an absolute godsend. Being able to just do that every couple of days, at my own convenience, when I have time set aside means I stay in control. I can do that for an hour (usually less), clean up, shower and then I'm good for 24 - 48 hours. Psychologically having some control over the more potentially embarrassing parts of MS is so important.
I completely get this comment. I use a Navina Smart irrigator. It really is so helpful. My diet has been very good for many years. I resent being advised by health care professionals who don’t look as though they follow their own dietary advice too .
Recently I was advised to drink Lemon barley to prevent UTIs. I’m sure it has additives and fake sugars. So as a person with ms we certainly get mixed messages.
I was advised barley water in the 1970s for UTI's caused by a kidney dysfunction which has now been operated and corrected. I don't know how useful barley really is, however it's not meant to be that cordial drink, but real Barley water, you buy the barley and simmer it in water, then cool it and drink, it's quite cloudy. I think some HP's maybe don't understand and send people off for a bottle of Robinsons!
Exactly. I’ll put lemon slices in water. She said it was the lemon altering the PH. She suggested the Lemon barley cordial. I don’t drink squash due to the preservatives and additives.
I try to eat organic and make homecooked meals most days (fibre, lots of fluids, correct posture for making stool, supplements, etc.: all check).
I would love to try a true holistic approach to treat my MS: with HIIT, a really clean diet, enough rest, less stress,...
But I still (need to) work for a living and fatigue is a big issue for me, as I'm sure it's for many PwMS.
Finding time and energy to acquire all that healthy food daily, cook it, exercise, do some HIIT, keep working, and btw not stressing too much about those and other things...
Try a "one thing at a time" approach and start with exercise. It may seem counterintuitive but exercise can really help with fatigue and raise your energy levels. Once you have more energy, try either more exercise, or the next thing on your list.
I had quite difficult problems a few years back with constipation. Ultimately, I ended up with fecal incontinence which is horrible. My GP made the utterly useless comment to "take two prunes and see you in 20 years". I managed to find a gastroenterologist who tested me for conditions like SIBO, gluten intolerance, helicobacter pylori infection etc and sent me for scans of my abdomen and pelvis. She put me onto an off-the-shelf product which had slippery elm as a major ingredient. The mixture had a number of prebiotics in the list of ingredients. She also suggested I eat more fermented foods (kimchi, sauerkraut) and drink Kefir. The one question that she focused on was based on using the Bristol stool chart (https://www.continence.org.au/bristol-stool-chart ). i.e. What sort of poo did I produce? I now know that type 4 is the gold standard and type 3 is a silver medal whilst everything else is a fail. Following her advice I now produce type 4 stools each day.
The scans she had done showed the backload of fecal matter that was causing me so much grief. Her suggestions worked, but it took a few weeks. The scans also showed an enlarged prostate that didn't help so, at her suggestion, I saw a urologist. There was no sign of a cancer, so she put me on alpha blockers that really didn't agree with me. At my instigation I got a referral to radiologist who performed a prostatic artery embolisation which is a minimally invasive way of reducing the blood supply to the prostate which causes it to shrink. The next day I was back driving my car and drinking coffee in a cafe. Importantly, it worked and I feel it helped make my bowel function feel more normal. The only problem occurred when I took an (unnecessary ) opioid based painkiller at the surgeon's suggestion. That caused a week of constipation which was vile. I fixed that constipation problem by following the gastroenterologist's earlier suggestions.
Ultimately, everyone needs to know that type 4 stools on the Bristol stool chart are the goal and MS people can really benefit from a good conversation with a gastroenterologist.
I get a weekly bag of organic vegetables. I plan my meals around what I receive in the bag, with the addition of brown rice, quinoa, wholegrain pasta, beans, pulses, tofu, tempeh and some fish. I incorporate plenty of movement - yoga, pump class, Pilates, cycle commuting and lots of walking. Usually running too but my body is struggling with that at the moment (I think due to my hEDS). My bowel movements are very regular! I know keeping myself mobile and active is key to this. I have an appointment with my osteopath coming up to see if we can get to the bottom of why I can't run (without pain that is) now.
People less mobile than me could try tai chi or chair based exercise. If you can, try Pilates. It really helps with core strength, balance, proprioception IE falls prevention and preparing you to increase your movement levels safely!
When it comes to cooking, there are pre prepared vegetables. Check the freezer aisle, there are so many things there now and you don't have to worry about food going bad in the fridge if you are not sure you will have the energy to cook. I also buy minced ginger and garlic in jars so I don't have to chop or grate them fresh.
Since I decided to eat plant-based almost 3 years ago, I have a regular bowel movement and, on average, go to the toilet 1-2 times a day to get the "food waste" out of my body. Eating plant-based doesn't automatically mean eating healthy. I still try to eat 80% low-processed food, lots of fibres and also drink at least 2l of water daily. For me, it helps a lot :)
I have followed a plant based diet for a couple of years now and track my macros to make sure I’m getting enough good fats protein etc. I am having 40-50g a day fibre so I’m not sure if that’s too much?! Since cutting out onion and garlic I have found my IBS much more stable. I eat mostly organic whole foods with 20% processed and drink 2L water per day. I’m happy with how I feel with my current diet and trying to keep up with HIIT and strength training when I can as well as regular dog walking- I think these help with my fatigue which is unpredictable.
I have had to move to a low fibre diet due to a surgery and radiotherapy induced collapsed small bowel obstruction. So to prevent the area completely obstructing again I need to restrict my fibre intake and then use gentle laxatives on a daily basis, so no senna etc... and no bulking fibre laxatives. I am actually finding this diet really difficult as it is limiting and pushes you into more processed food. My point is that I would love to be back on my healthy diet, eating homemade soups, lots of veg and bowels full of fruit, I felt so much healthier, I would love to be back on the diet.
So I agree with all your points, the issue could also be with social care, the carers just don't have the time to prepare anything but ultra processed food. While yes, many pwMS could improve their diet, many can't, we, as a society, need to sort our social care system out, we need to recognise by putting the finances into social care, giving the time each person needs then we reduce both people going into hospital and allowing people to come out of hospital sooner, in the long term we save money and give people dependant on social care a better quality of life.
We need the old fashioned "home helps" who had the time for people and could make proper food for those that can't do it themselves.
If you can afford it there are great frozen ready meals like All Plants. I had some sent to a bed bound friend who rated them highly (I don't use the term bed bound lightly by the way - she really is, and won't go into residential care. She doesn't have MS, possibly has Long Covid or my theory is FND)
Unfortunately because of the bowel obstruction my plant intake is severely restricted and these meals contain too much fibre. My diet is really limiting and here for the long term through necessity and not choice. The radiotherapy has made my intestines too "friable" to operate on to remove the problem area and the risk of a repeat bowel obstruction too high if I eat anything other than very small amounts of fibre (plants).
My bowel obstruction had collapsed on itself and was described as "impressive" by a junior surgeon ( a word you never want to hear from a medic), the on call radiographer was called in at 3am on a holiday weekend for me as it was so serious, it was an acute life threatening situation and will happen again if I eat the healthy diet, full of fibre, that I loved. I have been told it will be years before we know the final extent of the radiotherapy damage, so I must accept the low fibre diet for just now and celebrate still being alive.
Oh I'm sorry to hear that. I think you might be one of those special cases where an ultra processed diet (albeit a considered one) might be better for you
I do try and avoid them but its not always possible. As you say I am one of those special cases. I long for homemade soup, brown rice salad, proper veg curry, even carrot cake. I have discovered that onions, salad, leafs, mushrooms, strawberries and many more things are completely band.
My health board has less than ideal naso gastric tubes ( nurses words not mine) and not having one of those ever again is a huge incentive to eat the limited diet I have currently. I live in hope of the day I can again eat the way I was brought up and will celebrate with hummus, carrot sticks, lentil soups, veg curry and all the other things I love.
Please follow DR Gs medical advise!!! I myself do not have any constipation issues. However, my Mom had multiple autoimmune disorders & almost died from this. She fought her whole life going between diarrhea & constipation. Had other upper gi issues as well having to have a billroth 2 surgical procedure done at one point. 14yrs ago, my sister found her on floor. Went to ER by ambulance. Intubated.Immediate surgery. Found intestine perforated & gangrene! They removed a lge section, closed her & kept in an induced coma for 3 weeks. Yes she lived but Drs never thought she'd make it. She lived, or rather suffered w/many issues for 7rs longer. My mom was not diagnosed w/MS but had many other neurological symptoms similar to me. However, she also went through most of her life before diagnostic procedures for MS were used plus having RA, wouldn't be able to take many of the MS meds. Now my child has been going through gi issues most of her life. My point is, please do everything you can to prevent fecal impaction. It is not just severely painful, but can become much worse. Thank you Dr G for sharing this!!!
I eat cooked whole oat groats EVERY morning and view it as a nutraceutical. The reward is a daily morning constitutional and the feeding of soluble fiber to the good colon bacteria. I make a pot of the groats so that I have a week´s worth already cooked. Another tip is when sitting on the loo if you twist to your left a couple of times it stimulates your intestines to move things along the pipeline.
My morning coffee has added fiber. I also sneak berries into my diet wherever possible, as well as low-sugar cultured Greek yogurt. My nighttime pill routine includes magnesium citrate. These all help.
With this, I sway back and forth between hard stools that I manually manipulate with gloves and lubricants, and fluffy stools that like to stay up in their warm cave. It’s not perfect, but it’s manageable.
Sluggish has always been my norm, even before MS and so I really have to work to stay on top of this problem, even as a homecoming vegetarian of 40 years. Consistency is the key, excuse the pun!
Any change in the routine, like going on holiday can really take a week or two to get back to normal. Wholefoods and minimally processed are clearly the ways to go, but I personally really need to eat quite high fibre to get results.
- So I make wholegrain Rye crackers each week with stoneground Rye, water and packed with all the seeds I can find (chia, linseeds, sesame, pumpkin, hemp, Sunflower) I eat a few a day instead of bread. You don't need many as full of protein so very filling.
- I have lentils or beans every day, sometimes both. Homemade In soups, tagines, in chilli's, as cottage pies, as burgers, salads etc etc.
- I don't use rice or pasta, instead I use Quinoa or unpearled whole barley, or naked oats, or other wholegrains - Homedods online are fabulous for findings beans, pulses and grains.
- I sometimes take 5-10 mg inulin which is supposed to be a good source of insoluble fibre for the gut
- I have a friend who has been paraplegic for 40 years and he swears by Slippery Elm, I haven't used that but I do sometimes use psyllium husks or soak chias or linseeds.
- Try to add as many plants as you can, things like making mash with a mix of sweet potato, celeriac, swede, parsnips and mashed butter beans, is a good way to increase fibre and nutrients.
- if all else fails, glycerine suppositories are great for emergencies to prevent things getting worse - such as holidays.
- I don't drink alcohol and try to avoid sugar or simple carbs, one dehydrates and both cause massive fatigue, alongside the other issues
- I still sometimes struggle to keep consistency with fibre quantity, and I tend to drink way too much tea so I'm probably not as hydrated as I should be
Want to add fibre? Does not get any easier than overnight oats (I forget English name of the highest fibre type, in doubt read the nutrition label) for breakfast made with whatever liquid that floats your boat, personally I use soy milk and whatever topping (mostly berries for me) to make it a bit more palatable.
Those foods (if you can call them 'food') also shorten lifespan, as well as confabulate any disease treatment, such as: cancer, CVD, etc--including MS and MG. Especially MS!
I switched to remove as much of the "low fibre" from my diet - try to go whole grain and unprocessed wherever possible. It doesn't fix the problem of MS gut transit but it doesn't make it worse. There are "fast" alternatives particularly when cooking at home - wholemeal wraps (lightly grilled so they don't go soggy) instead of white bread sandwiches, whole grain rice, leave skins on potatoes cos they're the best bit anyway, that sort of thing. Try to make it convenient to eat healthy.
For the "other end" of things I found laxatives took ages to work and ended up working when I needed to be away from a convenient loo. I was given a Peristeen trans-anal irrigation device to use (which I have dubbed "The Poo-matic") which is an absolute godsend. Being able to just do that every couple of days, at my own convenience, when I have time set aside means I stay in control. I can do that for an hour (usually less), clean up, shower and then I'm good for 24 - 48 hours. Psychologically having some control over the more potentially embarrassing parts of MS is so important.
I completely get this comment. I use a Navina Smart irrigator. It really is so helpful. My diet has been very good for many years. I resent being advised by health care professionals who don’t look as though they follow their own dietary advice too .
Recently I was advised to drink Lemon barley to prevent UTIs. I’m sure it has additives and fake sugars. So as a person with ms we certainly get mixed messages.
I was advised barley water in the 1970s for UTI's caused by a kidney dysfunction which has now been operated and corrected. I don't know how useful barley really is, however it's not meant to be that cordial drink, but real Barley water, you buy the barley and simmer it in water, then cool it and drink, it's quite cloudy. I think some HP's maybe don't understand and send people off for a bottle of Robinsons!
Exactly. I’ll put lemon slices in water. She said it was the lemon altering the PH. She suggested the Lemon barley cordial. I don’t drink squash due to the preservatives and additives.
I know the theory, but in practice it's hard.
I try to eat organic and make homecooked meals most days (fibre, lots of fluids, correct posture for making stool, supplements, etc.: all check).
I would love to try a true holistic approach to treat my MS: with HIIT, a really clean diet, enough rest, less stress,...
But I still (need to) work for a living and fatigue is a big issue for me, as I'm sure it's for many PwMS.
Finding time and energy to acquire all that healthy food daily, cook it, exercise, do some HIIT, keep working, and btw not stressing too much about those and other things...
I'm sure not the only one.
Try a "one thing at a time" approach and start with exercise. It may seem counterintuitive but exercise can really help with fatigue and raise your energy levels. Once you have more energy, try either more exercise, or the next thing on your list.
I had quite difficult problems a few years back with constipation. Ultimately, I ended up with fecal incontinence which is horrible. My GP made the utterly useless comment to "take two prunes and see you in 20 years". I managed to find a gastroenterologist who tested me for conditions like SIBO, gluten intolerance, helicobacter pylori infection etc and sent me for scans of my abdomen and pelvis. She put me onto an off-the-shelf product which had slippery elm as a major ingredient. The mixture had a number of prebiotics in the list of ingredients. She also suggested I eat more fermented foods (kimchi, sauerkraut) and drink Kefir. The one question that she focused on was based on using the Bristol stool chart (https://www.continence.org.au/bristol-stool-chart ). i.e. What sort of poo did I produce? I now know that type 4 is the gold standard and type 3 is a silver medal whilst everything else is a fail. Following her advice I now produce type 4 stools each day.
The scans she had done showed the backload of fecal matter that was causing me so much grief. Her suggestions worked, but it took a few weeks. The scans also showed an enlarged prostate that didn't help so, at her suggestion, I saw a urologist. There was no sign of a cancer, so she put me on alpha blockers that really didn't agree with me. At my instigation I got a referral to radiologist who performed a prostatic artery embolisation which is a minimally invasive way of reducing the blood supply to the prostate which causes it to shrink. The next day I was back driving my car and drinking coffee in a cafe. Importantly, it worked and I feel it helped make my bowel function feel more normal. The only problem occurred when I took an (unnecessary ) opioid based painkiller at the surgeon's suggestion. That caused a week of constipation which was vile. I fixed that constipation problem by following the gastroenterologist's earlier suggestions.
Ultimately, everyone needs to know that type 4 stools on the Bristol stool chart are the goal and MS people can really benefit from a good conversation with a gastroenterologist.
That's interesting, Slippery Elm really has worked well for my friend who is paraplegic too. Clearly a very useful supplement! Thanks for sharing x
I get a weekly bag of organic vegetables. I plan my meals around what I receive in the bag, with the addition of brown rice, quinoa, wholegrain pasta, beans, pulses, tofu, tempeh and some fish. I incorporate plenty of movement - yoga, pump class, Pilates, cycle commuting and lots of walking. Usually running too but my body is struggling with that at the moment (I think due to my hEDS). My bowel movements are very regular! I know keeping myself mobile and active is key to this. I have an appointment with my osteopath coming up to see if we can get to the bottom of why I can't run (without pain that is) now.
People less mobile than me could try tai chi or chair based exercise. If you can, try Pilates. It really helps with core strength, balance, proprioception IE falls prevention and preparing you to increase your movement levels safely!
When it comes to cooking, there are pre prepared vegetables. Check the freezer aisle, there are so many things there now and you don't have to worry about food going bad in the fridge if you are not sure you will have the energy to cook. I also buy minced ginger and garlic in jars so I don't have to chop or grate them fresh.
Since I decided to eat plant-based almost 3 years ago, I have a regular bowel movement and, on average, go to the toilet 1-2 times a day to get the "food waste" out of my body. Eating plant-based doesn't automatically mean eating healthy. I still try to eat 80% low-processed food, lots of fibres and also drink at least 2l of water daily. For me, it helps a lot :)
Linseed, lightly crushed in a coffee grinder machine, added to breakfast works for me.
I have followed a plant based diet for a couple of years now and track my macros to make sure I’m getting enough good fats protein etc. I am having 40-50g a day fibre so I’m not sure if that’s too much?! Since cutting out onion and garlic I have found my IBS much more stable. I eat mostly organic whole foods with 20% processed and drink 2L water per day. I’m happy with how I feel with my current diet and trying to keep up with HIIT and strength training when I can as well as regular dog walking- I think these help with my fatigue which is unpredictable.
I have had to move to a low fibre diet due to a surgery and radiotherapy induced collapsed small bowel obstruction. So to prevent the area completely obstructing again I need to restrict my fibre intake and then use gentle laxatives on a daily basis, so no senna etc... and no bulking fibre laxatives. I am actually finding this diet really difficult as it is limiting and pushes you into more processed food. My point is that I would love to be back on my healthy diet, eating homemade soups, lots of veg and bowels full of fruit, I felt so much healthier, I would love to be back on the diet.
So I agree with all your points, the issue could also be with social care, the carers just don't have the time to prepare anything but ultra processed food. While yes, many pwMS could improve their diet, many can't, we, as a society, need to sort our social care system out, we need to recognise by putting the finances into social care, giving the time each person needs then we reduce both people going into hospital and allowing people to come out of hospital sooner, in the long term we save money and give people dependant on social care a better quality of life.
We need the old fashioned "home helps" who had the time for people and could make proper food for those that can't do it themselves.
If you can afford it there are great frozen ready meals like All Plants. I had some sent to a bed bound friend who rated them highly (I don't use the term bed bound lightly by the way - she really is, and won't go into residential care. She doesn't have MS, possibly has Long Covid or my theory is FND)
Unfortunately because of the bowel obstruction my plant intake is severely restricted and these meals contain too much fibre. My diet is really limiting and here for the long term through necessity and not choice. The radiotherapy has made my intestines too "friable" to operate on to remove the problem area and the risk of a repeat bowel obstruction too high if I eat anything other than very small amounts of fibre (plants).
My bowel obstruction had collapsed on itself and was described as "impressive" by a junior surgeon ( a word you never want to hear from a medic), the on call radiographer was called in at 3am on a holiday weekend for me as it was so serious, it was an acute life threatening situation and will happen again if I eat the healthy diet, full of fibre, that I loved. I have been told it will be years before we know the final extent of the radiotherapy damage, so I must accept the low fibre diet for just now and celebrate still being alive.
Oh I'm sorry to hear that. I think you might be one of those special cases where an ultra processed diet (albeit a considered one) might be better for you
I do try and avoid them but its not always possible. As you say I am one of those special cases. I long for homemade soup, brown rice salad, proper veg curry, even carrot cake. I have discovered that onions, salad, leafs, mushrooms, strawberries and many more things are completely band.
My health board has less than ideal naso gastric tubes ( nurses words not mine) and not having one of those ever again is a huge incentive to eat the limited diet I have currently. I live in hope of the day I can again eat the way I was brought up and will celebrate with hummus, carrot sticks, lentil soups, veg curry and all the other things I love.
Please follow DR Gs medical advise!!! I myself do not have any constipation issues. However, my Mom had multiple autoimmune disorders & almost died from this. She fought her whole life going between diarrhea & constipation. Had other upper gi issues as well having to have a billroth 2 surgical procedure done at one point. 14yrs ago, my sister found her on floor. Went to ER by ambulance. Intubated.Immediate surgery. Found intestine perforated & gangrene! They removed a lge section, closed her & kept in an induced coma for 3 weeks. Yes she lived but Drs never thought she'd make it. She lived, or rather suffered w/many issues for 7rs longer. My mom was not diagnosed w/MS but had many other neurological symptoms similar to me. However, she also went through most of her life before diagnostic procedures for MS were used plus having RA, wouldn't be able to take many of the MS meds. Now my child has been going through gi issues most of her life. My point is, please do everything you can to prevent fecal impaction. It is not just severely painful, but can become much worse. Thank you Dr G for sharing this!!!
I eat cooked whole oat groats EVERY morning and view it as a nutraceutical. The reward is a daily morning constitutional and the feeding of soluble fiber to the good colon bacteria. I make a pot of the groats so that I have a week´s worth already cooked. Another tip is when sitting on the loo if you twist to your left a couple of times it stimulates your intestines to move things along the pipeline.
Wheelchair user in the states here.
My morning coffee has added fiber. I also sneak berries into my diet wherever possible, as well as low-sugar cultured Greek yogurt. My nighttime pill routine includes magnesium citrate. These all help.
With this, I sway back and forth between hard stools that I manually manipulate with gloves and lubricants, and fluffy stools that like to stay up in their warm cave. It’s not perfect, but it’s manageable.
Bullet stimulants can help in a pinch.
Sluggish has always been my norm, even before MS and so I really have to work to stay on top of this problem, even as a homecoming vegetarian of 40 years. Consistency is the key, excuse the pun!
Any change in the routine, like going on holiday can really take a week or two to get back to normal. Wholefoods and minimally processed are clearly the ways to go, but I personally really need to eat quite high fibre to get results.
- So I make wholegrain Rye crackers each week with stoneground Rye, water and packed with all the seeds I can find (chia, linseeds, sesame, pumpkin, hemp, Sunflower) I eat a few a day instead of bread. You don't need many as full of protein so very filling.
- I have lentils or beans every day, sometimes both. Homemade In soups, tagines, in chilli's, as cottage pies, as burgers, salads etc etc.
- I don't use rice or pasta, instead I use Quinoa or unpearled whole barley, or naked oats, or other wholegrains - Homedods online are fabulous for findings beans, pulses and grains.
- I sometimes take 5-10 mg inulin which is supposed to be a good source of insoluble fibre for the gut
- I have a friend who has been paraplegic for 40 years and he swears by Slippery Elm, I haven't used that but I do sometimes use psyllium husks or soak chias or linseeds.
- Try to add as many plants as you can, things like making mash with a mix of sweet potato, celeriac, swede, parsnips and mashed butter beans, is a good way to increase fibre and nutrients.
- if all else fails, glycerine suppositories are great for emergencies to prevent things getting worse - such as holidays.
- I don't drink alcohol and try to avoid sugar or simple carbs, one dehydrates and both cause massive fatigue, alongside the other issues
- I still sometimes struggle to keep consistency with fibre quantity, and I tend to drink way too much tea so I'm probably not as hydrated as I should be
home cooking - not homecoming! ha!
urgencies medicines leads toconstipation
ileaks or being constipates
no solution
years of Betmiga or vesicare have changed my gut
What is .the solution??
Metformin, metformin, metformin
Want to add fibre? Does not get any easier than overnight oats (I forget English name of the highest fibre type, in doubt read the nutrition label) for breakfast made with whatever liquid that floats your boat, personally I use soy milk and whatever topping (mostly berries for me) to make it a bit more palatable.
Those foods (if you can call them 'food') also shorten lifespan, as well as confabulate any disease treatment, such as: cancer, CVD, etc--including MS and MG. Especially MS!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9902937/