I think I have the onset of this. Luckily it's only happened at home and I got to the loo in time. I dread it happening when I'm out. Lots of tips on here so shall be fore armed!! A bigger bag is required.
Bowel and bladder issues are horrible. I had an accident in public in summer while wearing a summer dress in the middle of a posh shop with a highly polished floor. My poo dropped on the floor. I wanted to die. I swiftly picked it up, put in bag and disappeared fast. I cried all day until my daughter came & sat with me & said 'you'll laugh about this one day'.
She was right.
But I do travel with wet wipes & clean underwear etc.
I lost sphincter control very early on with MS. This also coincided with getting slow transitory bowel issues. This as I understand is when the reflex throughout the whole digestive tract slows down or ceases to function. The bowel contents slows and the process of removing moisture from it to form a solid stool removes too much. This along with the bowel not moving the contents through the system causes constipation, or worse a compaction. This often compounded if you have bladder issues and regulate liquid intake,as the body is more likely to absorb more bowel moisture. I spent several years in this awful cycle of not passing for days, then a sudden and very immediate urge. I could still walk then, so could still rush to the toilet. Things slowly got worse when i had almost constant diarrhoea. I researched a little and realised that this was very likely caused by a compaction. The bowel has a number of ‘hairpin bends’ that can trap matter. The diarrhoea was getting stuck behind it and occasionally (involuntarily) escaping. I was really at my whits end until i spoke with a friend who had a spinal break and was paralysed from the chest down. He explained bowel management better than anyone had done in the past. I have not had an accident for some years. I know everyone is different but this is what works for me. I am sure to eat plenty of fresh veg and fruit. At night I take 1 1/2 sachets of kaxido (powdered laxative) for breakfast l have Bran flakes or all bran and a few tinned prunes. I then go to the bathroom insert a glycerine suppository. Within ten minutes I get the urge and transfer to the loo. The article below about the squatters potty is interesting as i always put my feet on a low stool as it helps. This process usually fully voids my bowels and l can get on with life as usual. Regularity is essential though. When l was regularly suffering from incontinence. I found it so much easier to clean up with less hair down their, so got the clippers and gave myself a bit of an ‘army haircut’ down their. That really helped. Sorry if I’ve put anyone off their lunch, but these few changes have revolutionised my life.
Having read this article has given me the impetus to do more Pilates and improve my core while I still can!
I am just beginning to experience that feeling of urgency. I’ve been worrying about what would happen if and when the problem got worse and reading this has allayed my fears. I’m sure that I could use the irrigation method if I had to, but fingers crossed I won’t need it for a few years!
I have a bowl of Allbran every morning and it works for me. But hey, thank goodness for constipation- the idea of a plug has sent my imagination into overdrive. What and how would that work?
No one ever really talks about this taboo subject and it’s just so good to have a forum where I feel safe to ask questions and share experiences. Thanks again for an interesting article.
I have had problems with ibs type symptoms for 12 years pre Major MS symptoms but I think it was the beginning . Mainly constipation but sometimes going the other way. I have had some hairy moments! Things that have helped is smooth move tea (get it from the US on iherb). I have a squatty potty which is great as it gets you into the perfect pooing position. The real game changer has been low dose naltrexone. Within a week it sorted my guts out and I now go once a day without fail. It has also helped my walking so defo recommend trying
I've suffered faecal incontinence for some years and now use anal irrigation daily. I still sometimes have urgency problems but very few 'accidents', although I still have my emergency chance of clothes in my car. The irrigation doesn't hurt at all (as long as you moisten the catheters first) and it gives me the confidence I need to go out. The only downside is that it's time consuming, but hey, that's nothing compared to the embarrassment and humiliation of leaking!!
Thank you for work on this, I have double urge incontinence, and spent most of my life only going out when necessary, and always taking a bag containing everything I need, although when your bowel empties completely, a shower is needed immediately, wet wipes aren’t sufficient! I have been hugely embarrassed and upset when it has happened, and it takes a long time to gather the courage to go out again, only venturing out when you hope your bowel has emptied . I was told many times over the years that anal irrigation was not the answer.
Gavin if you could ask people for there diets.. 🕘 However 🍄 mushroom are excelled for bowel problems so are probiotics? I am okay over active systems flashes out like clock work and fasting helps. Its all about getting the system too fall in place. Go with the programme.. 🤫😁
Question: I understand bowel problems can also occur from another simultaneous autoimmune disorder (ie, inflammatory bowel diseases like Crohns etc). How common is that, and how can we tell the difference between a bowel issue caused by MS vs another cause ?
A few years ago, way before being diagnosed, there was a period of time where I suffered from faecal incontinence. I was not able to reach the toilet just once lol but it wasn’t as bad as not to let me at least find a place to go, but it was truly annoying to be driving and running late to somewhere and having to stop because I didn’t know if I could get there before going. It sucked.
However, this improved by itself and I’ve never had any other issues with it. I must say that I’ve always had a delicate stomach and a few months after those episodes I improved my diet and my daily water intake so I think that made a big difference.
Now, I have a routine which I follow 95% of the days and I basically have no issues at all. Was my diet the improvement? Maybe. Was just a relapse I was having? Could be. All I know is that now I’m doing great and my urgency is only when I drink tons of water; but I still can hold it.
It’s good to know what was going on back then when I thought that I had parasites or something like that lol.
Can I recommend using a hand held bidet hose, plumbed in , next to the loo. It stimulates the bowel motion mostly, it’s great for cleaning yourself and it helps prevent frequent UTIs too. Make sure it’s plumbed in the hot as well, cold bidets are only tolerated in hot countries, in the Uk it must be warm. You can buy them quite reasonably on Amazon and the cost of the plumbing. I considerate it as one of best value tools.
This is incredibly useful. I don't want people to ask me what MS means for me, as it is this that is my nemesis, so I say I have occasional eye problems. True, but not particularly worrying. Cool-rectal issues are something that can be miserable. I have developed management strategies over the years. Some include taking extra stuff with me, like lavatory paper and sometime pads. Mostly I use Spanx. I don't really need shapewear, but it's an extra pair of undies, so if I have a problem, I have some chance of not being embarrassed. I also have a disabled lavatory key and a large directory to tell me where the disabled lavatories are. But I rarely take the directory, as I am usually loaded down with other equipment as I run and swim, so with a wetsuit or other gear, a thick book is extra weight. However, as much of my swimming is in the sea, I don't worry all that much in this environment. It's more when I'm out in smarter clothes. I rarely have a catastrophe, but that doesn't help much. The unpredictability is the problem. I can set out in the morning, have taken all management measures and it can still happen unexpectedly. Three things; drink plenty of water. Carry water with you. Secondly, exercise as much as you can, though this brings the trouble on unfortunatly. Finally do your best not to worry. It will happen, so try to stay cool calm and collected. The one thing I REFUSE to do, is to be housebound by this. In the last analysis I am prepared to have it happen away form home rather than be a prisoner in my house.
This article is very informative. I had to go to Stoke Mandeville hospital twice in 2016 with severe constipation. After an Enema both times, I looked closely at my diet. I have Cosmocol each morning, and more fruit n veg , lentils too. It helps, with more Cosmocol when needed.
I think I have the onset of this. Luckily it's only happened at home and I got to the loo in time. I dread it happening when I'm out. Lots of tips on here so shall be fore armed!! A bigger bag is required.
Bowel and bladder issues are horrible. I had an accident in public in summer while wearing a summer dress in the middle of a posh shop with a highly polished floor. My poo dropped on the floor. I wanted to die. I swiftly picked it up, put in bag and disappeared fast. I cried all day until my daughter came & sat with me & said 'you'll laugh about this one day'.
She was right.
But I do travel with wet wipes & clean underwear etc.
As the saying goes, 'life is shit'.
Hi
I lost sphincter control very early on with MS. This also coincided with getting slow transitory bowel issues. This as I understand is when the reflex throughout the whole digestive tract slows down or ceases to function. The bowel contents slows and the process of removing moisture from it to form a solid stool removes too much. This along with the bowel not moving the contents through the system causes constipation, or worse a compaction. This often compounded if you have bladder issues and regulate liquid intake,as the body is more likely to absorb more bowel moisture. I spent several years in this awful cycle of not passing for days, then a sudden and very immediate urge. I could still walk then, so could still rush to the toilet. Things slowly got worse when i had almost constant diarrhoea. I researched a little and realised that this was very likely caused by a compaction. The bowel has a number of ‘hairpin bends’ that can trap matter. The diarrhoea was getting stuck behind it and occasionally (involuntarily) escaping. I was really at my whits end until i spoke with a friend who had a spinal break and was paralysed from the chest down. He explained bowel management better than anyone had done in the past. I have not had an accident for some years. I know everyone is different but this is what works for me. I am sure to eat plenty of fresh veg and fruit. At night I take 1 1/2 sachets of kaxido (powdered laxative) for breakfast l have Bran flakes or all bran and a few tinned prunes. I then go to the bathroom insert a glycerine suppository. Within ten minutes I get the urge and transfer to the loo. The article below about the squatters potty is interesting as i always put my feet on a low stool as it helps. This process usually fully voids my bowels and l can get on with life as usual. Regularity is essential though. When l was regularly suffering from incontinence. I found it so much easier to clean up with less hair down their, so got the clippers and gave myself a bit of an ‘army haircut’ down their. That really helped. Sorry if I’ve put anyone off their lunch, but these few changes have revolutionised my life.
RV
Having read this article has given me the impetus to do more Pilates and improve my core while I still can!
I am just beginning to experience that feeling of urgency. I’ve been worrying about what would happen if and when the problem got worse and reading this has allayed my fears. I’m sure that I could use the irrigation method if I had to, but fingers crossed I won’t need it for a few years!
I have a bowl of Allbran every morning and it works for me. But hey, thank goodness for constipation- the idea of a plug has sent my imagination into overdrive. What and how would that work?
No one ever really talks about this taboo subject and it’s just so good to have a forum where I feel safe to ask questions and share experiences. Thanks again for an interesting article.
I have had problems with ibs type symptoms for 12 years pre Major MS symptoms but I think it was the beginning . Mainly constipation but sometimes going the other way. I have had some hairy moments! Things that have helped is smooth move tea (get it from the US on iherb). I have a squatty potty which is great as it gets you into the perfect pooing position. The real game changer has been low dose naltrexone. Within a week it sorted my guts out and I now go once a day without fail. It has also helped my walking so defo recommend trying
I've suffered faecal incontinence for some years and now use anal irrigation daily. I still sometimes have urgency problems but very few 'accidents', although I still have my emergency chance of clothes in my car. The irrigation doesn't hurt at all (as long as you moisten the catheters first) and it gives me the confidence I need to go out. The only downside is that it's time consuming, but hey, that's nothing compared to the embarrassment and humiliation of leaking!!
Very interesting read, as well as the comments made.
I seem to have become quite irregular nowadays and tend to go in the evening.
Sometimes when we have a trip to make (say into London) this can
can make me quite anxious early in the morning.
I'm sure that my various meds are playing a part here.
I'm trying to change this by eating more fruit and veg each day, as well as drinking
more water. I also carry out a number of home exercises.
When I worked (up until 2017), I went first thing in the morning regularly
and didn't even give it a 2nd thought.
I also tend to experience a lot of wind nowadays. Are there any obvious causes for this?
I believe I eat a balanced healthy diet.
Due to lockdown, we havn't had many visitors.
I dread when people come to stay overnight again.
I'll have to move into the garden shed (if we had one!) :-)
Thank you for work on this, I have double urge incontinence, and spent most of my life only going out when necessary, and always taking a bag containing everything I need, although when your bowel empties completely, a shower is needed immediately, wet wipes aren’t sufficient! I have been hugely embarrassed and upset when it has happened, and it takes a long time to gather the courage to go out again, only venturing out when you hope your bowel has emptied . I was told many times over the years that anal irrigation was not the answer.
Gavin if you could ask people for there diets.. 🕘 However 🍄 mushroom are excelled for bowel problems so are probiotics? I am okay over active systems flashes out like clock work and fasting helps. Its all about getting the system too fall in place. Go with the programme.. 🤫😁
Question: I understand bowel problems can also occur from another simultaneous autoimmune disorder (ie, inflammatory bowel diseases like Crohns etc). How common is that, and how can we tell the difference between a bowel issue caused by MS vs another cause ?
A few years ago, way before being diagnosed, there was a period of time where I suffered from faecal incontinence. I was not able to reach the toilet just once lol but it wasn’t as bad as not to let me at least find a place to go, but it was truly annoying to be driving and running late to somewhere and having to stop because I didn’t know if I could get there before going. It sucked.
However, this improved by itself and I’ve never had any other issues with it. I must say that I’ve always had a delicate stomach and a few months after those episodes I improved my diet and my daily water intake so I think that made a big difference.
Now, I have a routine which I follow 95% of the days and I basically have no issues at all. Was my diet the improvement? Maybe. Was just a relapse I was having? Could be. All I know is that now I’m doing great and my urgency is only when I drink tons of water; but I still can hold it.
It’s good to know what was going on back then when I thought that I had parasites or something like that lol.
Can I recommend using a hand held bidet hose, plumbed in , next to the loo. It stimulates the bowel motion mostly, it’s great for cleaning yourself and it helps prevent frequent UTIs too. Make sure it’s plumbed in the hot as well, cold bidets are only tolerated in hot countries, in the Uk it must be warm. You can buy them quite reasonably on Amazon and the cost of the plumbing. I considerate it as one of best value tools.
This is incredibly useful. I don't want people to ask me what MS means for me, as it is this that is my nemesis, so I say I have occasional eye problems. True, but not particularly worrying. Cool-rectal issues are something that can be miserable. I have developed management strategies over the years. Some include taking extra stuff with me, like lavatory paper and sometime pads. Mostly I use Spanx. I don't really need shapewear, but it's an extra pair of undies, so if I have a problem, I have some chance of not being embarrassed. I also have a disabled lavatory key and a large directory to tell me where the disabled lavatories are. But I rarely take the directory, as I am usually loaded down with other equipment as I run and swim, so with a wetsuit or other gear, a thick book is extra weight. However, as much of my swimming is in the sea, I don't worry all that much in this environment. It's more when I'm out in smarter clothes. I rarely have a catastrophe, but that doesn't help much. The unpredictability is the problem. I can set out in the morning, have taken all management measures and it can still happen unexpectedly. Three things; drink plenty of water. Carry water with you. Secondly, exercise as much as you can, though this brings the trouble on unfortunatly. Finally do your best not to worry. It will happen, so try to stay cool calm and collected. The one thing I REFUSE to do, is to be housebound by this. In the last analysis I am prepared to have it happen away form home rather than be a prisoner in my house.
a must read:
Let's Talk Shit: Disease, Digestion and Fecal Transplants Paperback – 5 december 2020
Engels editie Sabine Hazan MD (auteur), Thomas Borody MD (auteur), Sheli Ellsworth (auteur)
Does MS make the gastro-colic reflex stronger or more urgent?
This article is very informative. I had to go to Stoke Mandeville hospital twice in 2016 with severe constipation. After an Enema both times, I looked closely at my diet. I have Cosmocol each morning, and more fruit n veg , lentils too. It helps, with more Cosmocol when needed.