A timely, important and interesting read. I was diagnosed with SIBO only in April 2023 after having symptoms since January 2023. The 2 week antibiotic treatment they provided worked wonders, alongside taking a probiotic daily (Vivomixx). I have definitely found since my SIBO was treated my MS symptoms (MS hug mainly and fatigue) have definitely improved.
Hi Thomas, you have found the Vivomixx makes a difference? I have yet to find a commercial probiotic that is effective. If this is, that’s great news. I could use a decent gut probiotic. Thanks.🌷
I definitely have found it makes a difference in reducing systems. I generally after a month plus taking the Vivomixx felt better overall with gut health and generally with all other resulting symptoms - so I'd definitely recommend it. If you search on Google Scholar too if interested (I use it for unrelated academic work I do for my job and generally it brings up reliable sources) there are some research papers interestingly about using vivomixx and other probiotics and whether it was seen as useful in MS management. The results are not conclusive or ground breaking yet but it seemed promising (others would know much more about this than me) - so to me it seemed Vivomixx might help on others front too. Hope that helps- Thomas.
I have suffered with constipation - going only once, sometimes twice, a week - and therefore urgency, for years. That and my bladder were my only real continuous symptoms. I had a trial for a Navina irrigation and it has changed my life as I go daily and it is under my control when that is. However, it doesn't get to the cause of the issue so I would be interested in this test, as if it could be solved without daily irrigation that would be amazing. Incidentally, my bladder is now much improved now too as it doesn't have the pressure from the bowel on it. Also, I had found that dairy had an influence on my urgency so I had avoided that for a few years before I got my Navina.
I’ve had Navina Smart. It is helpful but I find it fatiguing, re legs and balance. I think I’ll re visit it. I agree about bladder, when the bowel is full it seems to block the bladder and peeing is harder.
Originally the Continence Nurse. Pre Covid. The GP then took the cost on. I had a call from a medical secretary at the time, they were not pleased about it. I continued to get it but had some problems in December and went back to Lecicarbon. I’ve learnt by cutting them in half it’s enough.
After a recent bout of incredibly painful constipation, I realized that constipation is not "normal" or healthy and have accepted that my MS may be the culprit. I'm now trying to figure out what I can do to help alleviate "the clogging," preferably with food and/or lifestyle alterations. There is no way that being as backed up as I was is healthy in general or for my MS. While I knew that MS could negatively impact bowel mobility, I never would have guessed that it could be having as big of an impact as I've experienced. Here's to learning more about this disease/disorder and figuring out ways to work with or around it.
Pwms are not content to live with constipation. We are forced to live with constipation because nothing works. It is not helpful to point out to a person that that their mri indicates fecal impaction. I am yet to find a solution despite changes in diet, use of stool softeners, drinking plenty of water using suppositories, using enemas, using an anal irrigation system. I guarantee that I am not alone.
I’m not content to tolerate my bowel problems. How do I get a SIBO test. I have self irrigated but find it challenging. So have gone back to using Lecicarbon maybe 2-3 times a week. But it can also irritate my bowel.
The fundamental principle is to work out what works best for you and to aim for a bowel action daily. The fundamental problem in MS is hypo-motility and hence you need a prokinetic agent (senekot, or another medication), to that you need to add a bulking agent (fibre, via diet or supplements) and an a osmotic agent to keep the stools loose (lactulose or polyethylene glycol). To stimulate a bowel action you can use caffeine, exercise, physical stimulation (fingers, anal plug, vibrating pad, ...), glycerine and/or other suppositories, mini-enemas, enemas, etc. It is horses for courses, which is why you need to experiment. Finally there is always recital irrigation. If paraplegics can do it pwMS can do it. It is also important to review your concomitant medications; many medications make constipation worse. Can you stop any of these medications? Please make sure you don't dehydrate yourself. A lot of pwMS dehydrate themselves by fluid restriction to control urinary frequency; this makes constipation worse.
Interesting. I've had bowel symptoms for the past 35 years. Initially diarrhoea but now severe constipation. I've been told that I have no nerve supply to my bowel telling it to work. My onset of MS has now been put at 35 years ago - the start of my bowel symptoms and not 2014 when had a relapse. Everyone says that my bowel symptoms was a clear MS symptom.
It’s amazing that a simple breath test can at least point us in the right direction regarding gut health in the small intestine. That said, I just had an upper endoscopy that would have been the optimal time to test for this! I have cut back by 2/3 the PPIs for GERD, so I suppose that’s a good thing. Constant constipation management is very difficult, particularly if one has irritable bowel (and if one catheterizes). However, I find that if I don’t stay current with a bowel movement at least every three days, I feel fuzzy headed and a bit foggy. (I’m wondering if it’s that separate gut nervous system?) I can’t get lazy and let too much time go by, because the few times I did, it was both painful and frightening. Having tried everything to keep things moving, so to speak, I’m back to good old senna laxative. I try not to take too much, due to the IBS. There’s also the issue of necessary meticulous cleansing if you are a woman and you regularly catheterize. E. coli is always sneaking around waiting to cause a UTI that isn’t immediately felt and ends up in a kidney. I’d like to learn more about the irrigation system. I have never heard of such a thing. Thank you for this discussion, Prof G. It’s a good one for a frustrating issue. 🌷
Constipation has been the bane of my life with MS! I’ve been trying to problem solve this for years. I take 5mg bisycodyl every night at bed time. This generally works. However I was worried about going on holiday to South Africa (for 25 days) with this constipation. I need not have worried! After years of trying to solve the problem I found the solution… driving on gravel roads meant my bowel moved and I went nearly every day. When I got back I bought on FB marketplace a vibrating pad… a passive exercising machine. If I haven’t had a bowel movement for 3 days I have peanut butter on toast followed by 5 minutes sitting on the vibration pad. It works EVERY time. Managing my bowel is still not easy, however I do feel I’m more in control these days!
I am on Clarithromycin after a spell in hospital with fever and relapse. Not sure if it's the T9/10 or the C2 as I declined the contrast. It's disappointing, my gut seemed good but I now need to figure out the best way to repopulate it. I am familiar with SIBO but don't think it's an issue for me. My gut issues are caused by histamine intolerance. I have lactose free dairy as it's less likely to trigger my type 1, 2 , 3 and 4 rosacea.
This was a very interesting read. I've been having issues with bloating for a couple of years (I reckon connected to the vicious antibiotics I had to take for latent TB) and have been experiencing acid reflux kinda symptoms (acidy throat, swallowing issues) for the past six months with no respite and no relief from PPIs. I wonder if SIBO could be causing these symptoms. My neuro doesn't think they're MS related and my GP doesn't seem to want to do anything but PPIs, so I'm at my wit's end now really. I have made all the relevant lifestyle adjustments (non-smoker, healthy bland diet, no fizzy drinks, early dinners) but to no avail.
Some of the very worst symptoms of my MS are constant nausea and other things you listed. Every day for decades. It's extremely hard to endure. I've never heard of SIBO, never been tested for it, and never been treated for it. A quick Google tells me my best hope for ruling it out is to try see a gastroenterologist. That'll be another uphill battle 🤕
Thanks, Dr. G. This is why I believe life style medicine should be "de rigeur" for PwMS. A whole food plant oriented eating pattern will help clean up the gut. And combine this with a consult w/ an integrative / functional doctor. I find few PwMS take this seriously. And will my neuro want to discuss this....no. There is no money there.
I think i take a lot of medication daily that contributes to the reasons for my constipation (Mirabegron, amitriptyline, tamsulosin,pregabalin, and nitrofurantoin for overactive bladder, cystitis or pain symptoms.) strangely, I think I’m not so constipated without the nitrofurantoin alone but feel like I need it to prevent recurrent UTIs or cystitis symptoms. Five years ago in preparation for my wedding I transformed my diet, increased fibre, water intake and exercise regularly and my constipation was resolved however, it’s a slippery slope to fall back into and now I am trying to climb out of that trap again. i’ve spent years avoiding drinking because of my overactive bladder symptoms, but water and time to acknowledge the problem resolves a lot. I now start the day with a prebiotic And a high fibre breakfast cereal and this seems to do the trick (I just need to remember to add water throughout the day)
Dear Sarah, have you managed to become UTI free? Unfortunately, I am currently in situation where I HAVE to take a single dose of antibiotic after sex, or else have an UTI within less than 24h. I too take mirabegron for urgency and frequency. I used to take nitrofurantoin for 6 months, then make a pause, then swiched to Hiprex. But all these antibiotics work as long as I use them. During pauses i simply cannot have sex without risking UTIs :-(
My urologist told me 12 years ago to take 1 dose of Trimethoprim / Sulfamethoxazole after sex. However, my e.coli quickly became immune to it. I used nitrofurantoin, hipprex and norfloxacin in continuity (6-12 months), but when I stop taking them, UTI is here :-(
Since last summer, I used to take norfloxacin only after sex, and it worked until last month. Probably I became immune to it. After month of apstinence I tried taking a single dose of Ciprofloxacin (500mg) after sex, with 2x2000mg of d-mannose. And I think it works. Anyway, this is one big struggle. What is your experience?
Hi Belma, this is a tough one. Urologist years ago recommended post-coital Macrodantin (nitrofurantoin) but I I have an allergy to that as well as sulfa. Now I’m on Hipprex, (1 gram) daily, but no prophylactic antibiotic. I’m mostly concerned about the constant use of ciprofloxin, which is similar to norfloxin. I look sidewise and get UTIs now, especially with intermittent catheterizing. I’m even afraid to take a bath or here we go, and I don’t know why! I didn’t find mannose, the real bitter cranberry, effective, but it can’t hurt. With that and the cipro after, go for it! The other product my urologist recommended that has worked well has been Vagibiom, which I’m not certain is solely for post menopausal protection, but it does shield the urethra. Fortunately I’m older, so couples are forced to get creative, but I do hear your frustration when sex (or almost anything) will kick off a UTI. And when you’re younger, it’s just plain lousy.
Thank you for your post. D-mannose worked wonders for me, 3 days after sex I used to take 3x2000mg per day, and I was UTI free for 2 years. During regular days (with no sex), I took 2000mg daily. Unfortunately, as my MS is progressing, I now have bladder problems (aside form urgency) - the bladder does not empty itself completely when I pee. I have to press on my lower belly, and I force more urine out, but apparently it does not get fully emptied since I get UTI, even with taking 2000mg of d-mannose 4 or 5 times per day.
You are right, it is lousy, it sucks :( I am 37 years old and I dread of sex with my husband instead of enjoying it :-(
In people who are not emptying their bladder and have recurrent UTIs it is worth trying ISC (intermittent self-catheterisation), cranberry extract (tablets not juice) and alkalization of the urine (citric acid).
Is SIBO similar to Candida? I was treated for Candida when 1st diagnosed years ago. My guts are a mess, constant constipation. I had ‘bowel training’ at UCL, slight help. Supplements & diet haven’t helped. Does one get the SIBO test from a GP? Or will GP tell me to ask neurologist?
A timely, important and interesting read. I was diagnosed with SIBO only in April 2023 after having symptoms since January 2023. The 2 week antibiotic treatment they provided worked wonders, alongside taking a probiotic daily (Vivomixx). I have definitely found since my SIBO was treated my MS symptoms (MS hug mainly and fatigue) have definitely improved.
Hi Thomas, you have found the Vivomixx makes a difference? I have yet to find a commercial probiotic that is effective. If this is, that’s great news. I could use a decent gut probiotic. Thanks.🌷
Thanks for this.
I definitely have found it makes a difference in reducing systems. I generally after a month plus taking the Vivomixx felt better overall with gut health and generally with all other resulting symptoms - so I'd definitely recommend it. If you search on Google Scholar too if interested (I use it for unrelated academic work I do for my job and generally it brings up reliable sources) there are some research papers interestingly about using vivomixx and other probiotics and whether it was seen as useful in MS management. The results are not conclusive or ground breaking yet but it seemed promising (others would know much more about this than me) - so to me it seemed Vivomixx might help on others front too. Hope that helps- Thomas.
Thank you, Thomas. I will research this further. It appears to be a prescription product, at least here in states. Yes! It helps. Best.🌷
I have suffered with constipation - going only once, sometimes twice, a week - and therefore urgency, for years. That and my bladder were my only real continuous symptoms. I had a trial for a Navina irrigation and it has changed my life as I go daily and it is under my control when that is. However, it doesn't get to the cause of the issue so I would be interested in this test, as if it could be solved without daily irrigation that would be amazing. Incidentally, my bladder is now much improved now too as it doesn't have the pressure from the bowel on it. Also, I had found that dairy had an influence on my urgency so I had avoided that for a few years before I got my Navina.
I’ve had Navina Smart. It is helpful but I find it fatiguing, re legs and balance. I think I’ll re visit it. I agree about bladder, when the bowel is full it seems to block the bladder and peeing is harder.
Hi Helen, see my note to you and Emma above about Navina. Who prescribes?🌷
Hi Emma and Helen, who prescribes the Navina? Is this a gastroenterologist or your neurologist? I’ve never heard of this. Sounds very interesting! -🌷
https://www.wellspect.co.uk/products/bowel-products/navina-irrigation-system/navina-classic/
Originally the Continence Nurse. Pre Covid. The GP then took the cost on. I had a call from a medical secretary at the time, they were not pleased about it. I continued to get it but had some problems in December and went back to Lecicarbon. I’ve learnt by cutting them in half it’s enough.
Thanks, Helen. 🌷
I'm under the GI - Physiology team at UCLH and it was the bowel nurse who suggested it as a trial
Thanks, Emma, and Prof G for link. Will ask neuro.🌷
After a recent bout of incredibly painful constipation, I realized that constipation is not "normal" or healthy and have accepted that my MS may be the culprit. I'm now trying to figure out what I can do to help alleviate "the clogging," preferably with food and/or lifestyle alterations. There is no way that being as backed up as I was is healthy in general or for my MS. While I knew that MS could negatively impact bowel mobility, I never would have guessed that it could be having as big of an impact as I've experienced. Here's to learning more about this disease/disorder and figuring out ways to work with or around it.
Pwms are not content to live with constipation. We are forced to live with constipation because nothing works. It is not helpful to point out to a person that that their mri indicates fecal impaction. I am yet to find a solution despite changes in diet, use of stool softeners, drinking plenty of water using suppositories, using enemas, using an anal irrigation system. I guarantee that I am not alone.
No, Jane, you aren’t alone. Not by any means. It’s a constant challenge. 🌷
Shoot me for even mentioning, but the thing that really helps is Nicotine.
Hmmm. Sounds interesting!
I’m not content to tolerate my bowel problems. How do I get a SIBO test. I have self irrigated but find it challenging. So have gone back to using Lecicarbon maybe 2-3 times a week. But it can also irritate my bowel.
Thank you for establishing that MS-constipation is part of the MS-fun:
1-intermittent diarrhoea in MS being a sign of possible faecal impaction and how to manage it (see Intermittent diarrhoea in MS; 02-Nov-2021)
2-the issue of faecal incontinence (see Faecal incontinence; 4-Aug-2021).
3-the issue associated with chronic constipation in MS is small intestinal bacterial overgrowth (SIBO) (see How is your gut health? ; 3 July 2023).
It is not so easy to live with MD-constipation and it is not sooo easy at all to prevent MS-constipation.
So how to prevent MS-constipation?
The fundamental principle is to work out what works best for you and to aim for a bowel action daily. The fundamental problem in MS is hypo-motility and hence you need a prokinetic agent (senekot, or another medication), to that you need to add a bulking agent (fibre, via diet or supplements) and an a osmotic agent to keep the stools loose (lactulose or polyethylene glycol). To stimulate a bowel action you can use caffeine, exercise, physical stimulation (fingers, anal plug, vibrating pad, ...), glycerine and/or other suppositories, mini-enemas, enemas, etc. It is horses for courses, which is why you need to experiment. Finally there is always recital irrigation. If paraplegics can do it pwMS can do it. It is also important to review your concomitant medications; many medications make constipation worse. Can you stop any of these medications? Please make sure you don't dehydrate yourself. A lot of pwMS dehydrate themselves by fluid restriction to control urinary frequency; this makes constipation worse.
THANKS 👍
I have been severely constipated since I was a child. I often didn't go for two weeks.
I've only been diagnosed with MS at age 35, so for me, it feels like constipation was there long before MS, and is not really related.
That is, until more research on the gut/brain axis reveals constipation causes MS of course ;)
Interesting. I've had bowel symptoms for the past 35 years. Initially diarrhoea but now severe constipation. I've been told that I have no nerve supply to my bowel telling it to work. My onset of MS has now been put at 35 years ago - the start of my bowel symptoms and not 2014 when had a relapse. Everyone says that my bowel symptoms was a clear MS symptom.
It’s amazing that a simple breath test can at least point us in the right direction regarding gut health in the small intestine. That said, I just had an upper endoscopy that would have been the optimal time to test for this! I have cut back by 2/3 the PPIs for GERD, so I suppose that’s a good thing. Constant constipation management is very difficult, particularly if one has irritable bowel (and if one catheterizes). However, I find that if I don’t stay current with a bowel movement at least every three days, I feel fuzzy headed and a bit foggy. (I’m wondering if it’s that separate gut nervous system?) I can’t get lazy and let too much time go by, because the few times I did, it was both painful and frightening. Having tried everything to keep things moving, so to speak, I’m back to good old senna laxative. I try not to take too much, due to the IBS. There’s also the issue of necessary meticulous cleansing if you are a woman and you regularly catheterize. E. coli is always sneaking around waiting to cause a UTI that isn’t immediately felt and ends up in a kidney. I’d like to learn more about the irrigation system. I have never heard of such a thing. Thank you for this discussion, Prof G. It’s a good one for a frustrating issue. 🌷
Constipation has been the bane of my life with MS! I’ve been trying to problem solve this for years. I take 5mg bisycodyl every night at bed time. This generally works. However I was worried about going on holiday to South Africa (for 25 days) with this constipation. I need not have worried! After years of trying to solve the problem I found the solution… driving on gravel roads meant my bowel moved and I went nearly every day. When I got back I bought on FB marketplace a vibrating pad… a passive exercising machine. If I haven’t had a bowel movement for 3 days I have peanut butter on toast followed by 5 minutes sitting on the vibration pad. It works EVERY time. Managing my bowel is still not easy, however I do feel I’m more in control these days!
I am on Clarithromycin after a spell in hospital with fever and relapse. Not sure if it's the T9/10 or the C2 as I declined the contrast. It's disappointing, my gut seemed good but I now need to figure out the best way to repopulate it. I am familiar with SIBO but don't think it's an issue for me. My gut issues are caused by histamine intolerance. I have lactose free dairy as it's less likely to trigger my type 1, 2 , 3 and 4 rosacea.
This was a very interesting read. I've been having issues with bloating for a couple of years (I reckon connected to the vicious antibiotics I had to take for latent TB) and have been experiencing acid reflux kinda symptoms (acidy throat, swallowing issues) for the past six months with no respite and no relief from PPIs. I wonder if SIBO could be causing these symptoms. My neuro doesn't think they're MS related and my GP doesn't seem to want to do anything but PPIs, so I'm at my wit's end now really. I have made all the relevant lifestyle adjustments (non-smoker, healthy bland diet, no fizzy drinks, early dinners) but to no avail.
Some of the very worst symptoms of my MS are constant nausea and other things you listed. Every day for decades. It's extremely hard to endure. I've never heard of SIBO, never been tested for it, and never been treated for it. A quick Google tells me my best hope for ruling it out is to try see a gastroenterologist. That'll be another uphill battle 🤕
Dear Unnamable, I understand completely. Yet another specialist..🌷
🤕💛🌻
Thanks, Dr. G. This is why I believe life style medicine should be "de rigeur" for PwMS. A whole food plant oriented eating pattern will help clean up the gut. And combine this with a consult w/ an integrative / functional doctor. I find few PwMS take this seriously. And will my neuro want to discuss this....no. There is no money there.
This was very helpful and interesting, thanks!
I think i take a lot of medication daily that contributes to the reasons for my constipation (Mirabegron, amitriptyline, tamsulosin,pregabalin, and nitrofurantoin for overactive bladder, cystitis or pain symptoms.) strangely, I think I’m not so constipated without the nitrofurantoin alone but feel like I need it to prevent recurrent UTIs or cystitis symptoms. Five years ago in preparation for my wedding I transformed my diet, increased fibre, water intake and exercise regularly and my constipation was resolved however, it’s a slippery slope to fall back into and now I am trying to climb out of that trap again. i’ve spent years avoiding drinking because of my overactive bladder symptoms, but water and time to acknowledge the problem resolves a lot. I now start the day with a prebiotic And a high fibre breakfast cereal and this seems to do the trick (I just need to remember to add water throughout the day)
Dear Sarah, have you managed to become UTI free? Unfortunately, I am currently in situation where I HAVE to take a single dose of antibiotic after sex, or else have an UTI within less than 24h. I too take mirabegron for urgency and frequency. I used to take nitrofurantoin for 6 months, then make a pause, then swiched to Hiprex. But all these antibiotics work as long as I use them. During pauses i simply cannot have sex without risking UTIs :-(
Does this work? I also experience this annoying reality. What antibiotic (if I may ask)?
My urologist told me 12 years ago to take 1 dose of Trimethoprim / Sulfamethoxazole after sex. However, my e.coli quickly became immune to it. I used nitrofurantoin, hipprex and norfloxacin in continuity (6-12 months), but when I stop taking them, UTI is here :-(
Since last summer, I used to take norfloxacin only after sex, and it worked until last month. Probably I became immune to it. After month of apstinence I tried taking a single dose of Ciprofloxacin (500mg) after sex, with 2x2000mg of d-mannose. And I think it works. Anyway, this is one big struggle. What is your experience?
Hi Belma, this is a tough one. Urologist years ago recommended post-coital Macrodantin (nitrofurantoin) but I I have an allergy to that as well as sulfa. Now I’m on Hipprex, (1 gram) daily, but no prophylactic antibiotic. I’m mostly concerned about the constant use of ciprofloxin, which is similar to norfloxin. I look sidewise and get UTIs now, especially with intermittent catheterizing. I’m even afraid to take a bath or here we go, and I don’t know why! I didn’t find mannose, the real bitter cranberry, effective, but it can’t hurt. With that and the cipro after, go for it! The other product my urologist recommended that has worked well has been Vagibiom, which I’m not certain is solely for post menopausal protection, but it does shield the urethra. Fortunately I’m older, so couples are forced to get creative, but I do hear your frustration when sex (or almost anything) will kick off a UTI. And when you’re younger, it’s just plain lousy.
:( 🌷
Dear Italien,
Thank you for your post. D-mannose worked wonders for me, 3 days after sex I used to take 3x2000mg per day, and I was UTI free for 2 years. During regular days (with no sex), I took 2000mg daily. Unfortunately, as my MS is progressing, I now have bladder problems (aside form urgency) - the bladder does not empty itself completely when I pee. I have to press on my lower belly, and I force more urine out, but apparently it does not get fully emptied since I get UTI, even with taking 2000mg of d-mannose 4 or 5 times per day.
You are right, it is lousy, it sucks :( I am 37 years old and I dread of sex with my husband instead of enjoying it :-(
In people who are not emptying their bladder and have recurrent UTIs it is worth trying ISC (intermittent self-catheterisation), cranberry extract (tablets not juice) and alkalization of the urine (citric acid).
Is SIBO similar to Candida? I was treated for Candida when 1st diagnosed years ago. My guts are a mess, constant constipation. I had ‘bowel training’ at UCL, slight help. Supplements & diet haven’t helped. Does one get the SIBO test from a GP? Or will GP tell me to ask neurologist?
SIBO is a general term and refers to bacteria. Candida is a yeast, not a bacterium.