The biggest impact on my life with MS is my bowel! The problems began around the beginning of the century, 5 years after diagnosis in 1995, so I’ve been living with this and trying various things for over 20 years. You name a laxative and I’ve probably tried it! I started with the obvious, more fibre/water to no great effect. After 10 years a visit to a continence nurse convinced me that I needed laxatives. I monitored my fluid intake and discovered I was drinking 4 L of water daily and I was still constipated! Her suggestion was to use Movicol which to begin with was brilliant.
However after two weeks using daily I began to lose control of my bowel. I described my motions as cream cheese. It was unbearable, I couldn’t go out because I had lost all control. I went back to the continence nurse who told me I needed to balance the Movicol with Imodium. That apparently is what all ‘her’ ladies with MS do.
Telling someone who has been constipated for 10 years to use something that will bung them up seemed ridiculous to me so I went to see a GP. Together we came up with another option which was to use Docusate (brings water into the bowel)and Dulcolax (stimulator) in combination.
This worked to begin with however I started to get the diarrhoea effect again so I stopped using docusate and began to take one Dulcolax at night. This is still my routine to this day and 80% of the time it works.
In 2018 I went on a big trip to South Africa and I was worried about being constipated on that 3 1/2 week holiday. I didn’t need to worry because I discovered something, sitting in a car driving on bumpy gravel roads meant that I had no problems with my bowel. Since coming home I bought a vibrating pad off Facebook marketplace for eight quid and if I get constipated I sit on that for five minutes and it sorts me out!
I do still get occasional bouts of diarrhoea where I have urgency and need to be near at loo I’m beginning to learn the signals that this might be about to happen. What I have learnt is I probably only need six Dulcolax each week, so I miss out Sunday night.
Sorry for the long post…20 years worth of bowel trouble! One tip…get a bidet … mine is invaluable!
I just met with our amazing continence nurse, Sharon. She said pretty much what you did. Interestingly the GPs usually favour codeine, which is addictive, so unappealing. PwMS need to see that using senna and glycerine suppositories, while counter-intuitive, establishes a routine. Codeine only buys time.
She also advises a footstool, because the sigmoid bowel and the rectum (the penultimate bit and the final bit of the bowel respectively) form a question mark shape. Using a footstool makes the knees higher than the bowel and straightens this out, enabling the stool to leave the bowel more easily. She says to give the routine of Senna the night before and a suppository in the morning, a fortnight, to establish this routine. It might be a good idea to get up a bit earlier to get sorted out before you go to work though. Or don't make any early morning plans!
I use a hand held bidet spray. It must be hot water and high pressure. Sounds extreme but I wouldn’t be without it. A hand spray can be bought on Amazon, plumber to put in. It allows me to confidently go out and about, together with a credit card what could go wrong!
I had chronic constipation since I was about 4 years old. I have been constipated for 40 years (I frequently can't go for 7 to 10 days, I get painful fecal stones, and indeed with intermittent periods diarrhoea). I was diagnosed with IBS (but frankly, that's just describing my symptoms, not actually finding a cause for them). I do all the things you listed (and more).
I just wonder: how do you see the relation MS - constipation/diarrhoea?
Could it be that my constipation-issues were some sort of harbinger of my MS?
I was diagnosed at the age of 35, and mobility has only been an issue recently, so putting the constipation down to MS...?
Please include tips for people with later stages of MS who usually can't do the things you recommended here (partner has a feeding tube so no fiber, bedbound so no exercise, etc.)! Our regimen, which has taken years to perfect because no one has really done much study of constipation, is Culturelle daily, 3 doses of Lactulose daily, suppositories PRN 5-7 times per week, 1-3 doses of Miralax daily as needed, enemas as needed. Without these, partner gets obstructed, gets a UTI, turns into sepsis. With this, we are heading off the colostomies that many people with MS end up getting.
It caused me so much stress when my bowel started behaving like my bladder! I would be out and suddenly need the loo or be unable to completely empty my bowels. I recently saw a continence nurse and have started suppositories. They have made such a difference to me, I now have a complete bowel movement and don’t have the same anxieties as before. I have got into the habit of using them in the morning. As a side note, I also asked if I could change my bladder medications so I now taking Mirabegron instead of Oxybutynin which is better I think…?
I can't finish a breakfast coffee and bowl of porridge without needing to go!
I must admit I do have bowel issues if I'm away from home for any length of time and my diet and exercise are disrupted. But it's easily sorted as soon as I'm back in my usual routine and back in my kitchen.
The biggest impact on my life with MS is my bowel! The problems began around the beginning of the century, 5 years after diagnosis in 1995, so I’ve been living with this and trying various things for over 20 years. You name a laxative and I’ve probably tried it! I started with the obvious, more fibre/water to no great effect. After 10 years a visit to a continence nurse convinced me that I needed laxatives. I monitored my fluid intake and discovered I was drinking 4 L of water daily and I was still constipated! Her suggestion was to use Movicol which to begin with was brilliant.
However after two weeks using daily I began to lose control of my bowel. I described my motions as cream cheese. It was unbearable, I couldn’t go out because I had lost all control. I went back to the continence nurse who told me I needed to balance the Movicol with Imodium. That apparently is what all ‘her’ ladies with MS do.
Telling someone who has been constipated for 10 years to use something that will bung them up seemed ridiculous to me so I went to see a GP. Together we came up with another option which was to use Docusate (brings water into the bowel)and Dulcolax (stimulator) in combination.
This worked to begin with however I started to get the diarrhoea effect again so I stopped using docusate and began to take one Dulcolax at night. This is still my routine to this day and 80% of the time it works.
In 2018 I went on a big trip to South Africa and I was worried about being constipated on that 3 1/2 week holiday. I didn’t need to worry because I discovered something, sitting in a car driving on bumpy gravel roads meant that I had no problems with my bowel. Since coming home I bought a vibrating pad off Facebook marketplace for eight quid and if I get constipated I sit on that for five minutes and it sorts me out!
I do still get occasional bouts of diarrhoea where I have urgency and need to be near at loo I’m beginning to learn the signals that this might be about to happen. What I have learnt is I probably only need six Dulcolax each week, so I miss out Sunday night.
Sorry for the long post…20 years worth of bowel trouble! One tip…get a bidet … mine is invaluable!
I take a probiotics capsule a day, cheap enough on ebay. I also try to eat a diet that is gut friendly. It certainly gets things moving.
I just met with our amazing continence nurse, Sharon. She said pretty much what you did. Interestingly the GPs usually favour codeine, which is addictive, so unappealing. PwMS need to see that using senna and glycerine suppositories, while counter-intuitive, establishes a routine. Codeine only buys time.
She also advises a footstool, because the sigmoid bowel and the rectum (the penultimate bit and the final bit of the bowel respectively) form a question mark shape. Using a footstool makes the knees higher than the bowel and straightens this out, enabling the stool to leave the bowel more easily. She says to give the routine of Senna the night before and a suppository in the morning, a fortnight, to establish this routine. It might be a good idea to get up a bit earlier to get sorted out before you go to work though. Or don't make any early morning plans!
Oh yes, I have friends with a Squatty Potty by every loo in their house! The ad for it is priceless.
I must check the ad out. Using books is OK ,as I have no footstool but thousands of books!
https://youtu.be/YbYWhdLO43Q
I use a hand held bidet spray. It must be hot water and high pressure. Sounds extreme but I wouldn’t be without it. A hand spray can be bought on Amazon, plumber to put in. It allows me to confidently go out and about, together with a credit card what could go wrong!
I had chronic constipation since I was about 4 years old. I have been constipated for 40 years (I frequently can't go for 7 to 10 days, I get painful fecal stones, and indeed with intermittent periods diarrhoea). I was diagnosed with IBS (but frankly, that's just describing my symptoms, not actually finding a cause for them). I do all the things you listed (and more).
I just wonder: how do you see the relation MS - constipation/diarrhoea?
Could it be that my constipation-issues were some sort of harbinger of my MS?
I was diagnosed at the age of 35, and mobility has only been an issue recently, so putting the constipation down to MS...?
Please include tips for people with later stages of MS who usually can't do the things you recommended here (partner has a feeding tube so no fiber, bedbound so no exercise, etc.)! Our regimen, which has taken years to perfect because no one has really done much study of constipation, is Culturelle daily, 3 doses of Lactulose daily, suppositories PRN 5-7 times per week, 1-3 doses of Miralax daily as needed, enemas as needed. Without these, partner gets obstructed, gets a UTI, turns into sepsis. With this, we are heading off the colostomies that many people with MS end up getting.
It caused me so much stress when my bowel started behaving like my bladder! I would be out and suddenly need the loo or be unable to completely empty my bowels. I recently saw a continence nurse and have started suppositories. They have made such a difference to me, I now have a complete bowel movement and don’t have the same anxieties as before. I have got into the habit of using them in the morning. As a side note, I also asked if I could change my bladder medications so I now taking Mirabegron instead of Oxybutynin which is better I think…?
Thank you!
I can't finish a breakfast coffee and bowl of porridge without needing to go!
I must admit I do have bowel issues if I'm away from home for any length of time and my diet and exercise are disrupted. But it's easily sorted as soon as I'm back in my usual routine and back in my kitchen.
Thank you - you have given the most practical and informative advice 😋