Hi,
Yes, still after 13 years of it. The major problem is it is not a disease but a diagnosis given when they run out of names and diseases to label you with. It affects people in many different ways so is hard to give an exact remedy.
The basics are to start the Fodmap plan and note what is OK for you and what is not. Not always successful for everyone! Eventually you will come to recognise the foods you are OK with and the ones you are not.
I survive on very little and mostly food I'm not supposed to be able to eat with IBS, but it works for me confounding my Gastrologist. His attitude is now, if it works for me do it. You can go through times of extreme flare ups to times when you may be reasonably comfortable on a restricted diet. Too many tastes of the "forbiden" fruits can cause havock with the gut. There are loads of theories, heaps of anecdotal evidence and some scientific based facts around IBS. You just have to find your own way through. The help of a good dietitian is a worth while choice to get you started.
Through your journey you will learn about pre and pro biotics and the sceptisism that goes with them. I have tried them and had both good and no results from taking a course of them. Not all probiotics are created equal nor are they all stored the way they should be which means you could be buying dead cultures.
There are times you will be driven to the ragged edge and times you find some success, all you can do is to keep trying. It helped me by remembering that the food we injest is digested and feed to through out the body. The neutriants digested and feed to the body make up what we are, why would you feed it the rubbish you can no longer tolerate!
Dosen't stop me trying though and as usual I suffer the bad flare ups yet again! They are becomming fewer as the brain recognises the discomfort is not worth the pleasure and the lusting subsides. I look at my food as a life line not a pleasure.
Cheers
Hi,
Yes, still after 13 years of it. The major problem is it is not a disease but a diagnosis given when they run out of names and diseases to label you with. It affects people in many different ways so is hard to give an exact remedy.
The basics are to start the Fodmap plan and note what is OK for you and what is not. Not always successful for everyone! Eventually you will come to recognise the foods you are OK with and the ones you are not.
I survive on very little and mostly food I'm not supposed to be able to eat with IBS, but it works for me confounding my Gastrologist. His attitude is now, if it works for me do it. You can go through times of extreme flare ups to times when you may be reasonably comfortable on a restricted diet. Too many tastes of the "forbiden" fruits can cause havock with the gut. There are loads of theories, heaps of anecdotal evidence and some scientific based facts around IBS. You just have to find your own way through. The help of a good dietitian is a worth while choice to get you started.
Through your journey you will learn about pre and pro biotics and the sceptisism that goes with them. I have tried them and had both good and no results from taking a course of them. Not all probiotics are created equal nor are they all stored the way they should be which means you could be buying dead cultures.
There are times you will be driven to the ragged edge and times you find some success, all you can do is to keep trying. It helped me by remembering that the food we injest is digested and feed to through out the body. The neutriants digested and feed to the body make up what we are, why would you feed it the rubbish you can no longer tolerate!
Dosen't stop me trying though and as usual I suffer the bad flare ups yet again! They are becomming fewer as the brain recognises the discomfort is not worth the pleasure and the lusting subsides. I look at my food as a life line not a pleasure.
Cheers
@cheyne Nice post, good info!
I don’t have ibs but have been on the FODMAP diet for stomach issues. Loved your last paragraph! I’m very slow to learn that I can’t sneak in problem foods and not suffer the consequence.
@cheyne Nice post, good info!
I don’t have ibs but have been on the FODMAP diet for stomach issues. Loved your last paragraph! I’m very slow to learn that I can’t sneak in problem foods and not suffer the consequence.
Hi,
Thanks.
Unfortunately IBS is a big field with many many causes, hence the no particular diagnosis and very little research.
I have a lot more info but without knowing the particulars I'd be wasting a lot of time with irrelevant info for everyone.
I understand how desperate people can get and have come to understand the old adage, we are what we eat.
In the last year I have been diagnosed with Autonomic polyneuropathy which besides being a death sentence, likely quicker than everyone else who eventually die. It has taken control over my digestion leaving me as just a bystander to my health. Along for the ride until I decide I have had enough. No cure , no treatment and just left with suck it and see, then I have to be careful of just what I am sucking as well! Very few medical personnel even understand it if they are aware of it, at all.
Autonomia is one of the two main nervous system in the body, this one controls all we do without thinking, like heart beating, swallowing, and many more functions, that does not include the obvious mistakes we invariably make through absolute stupidity! Although I have been known to hide behind that excuse. So far it has ranged from temporary paralysis of my lower body to restricting the throat, poorly controlling with the bladder and bowels and playing with my blood pressure all when it wants, irrespective of my conscious input. Some of the symptoms are now permanent while others are random and becoming more numerous. At least the upside of this disease is there is nothing to do or try so I just deal with each day as it arrives and am not a bit concerned about the day that doesn't arrive! Death is the final symptom and escape from this disease. In some respects the heart stopping instantly beating without warning beats a long drawn out slow death, as I see it. With my luck it could be any one of the numerous health issues I'm dealing with that takes my life. Then again it could be a simple act of stepping out into traffic without watching what I'm doing.
People keep telling me "crap happens" and I have to say I wish it would! This disease doesn't allow me control of the relevant muscles to get it done, easily.
What is left, hope for something better tomorrow. That is what keeps driving me forward. As long as I don't dwell on my health issues too much, they don't hurt and I can plough on trying not to make too much of a mess of my life.
The real beauty of this disease is I can stir up Dr's without recourse from them. They can't withhold help or treatment that doesn't exist. Of course I equally can't complain about my health treatment, there is none. It is liberating to be able to state my thoughts without meaningful interference from them while challenging their deliberations. They know gobbledygook doesn't fly with me anymore. I have come to understand Dr's are not Gods of medicine, they are no different to you or me, able to be wrong, make mistakes and are just plain "human", the failing of us all!
Cheers
I don't have IBS, but have celiac and IBD(isease). I can't eat gluten, legumes, or NSAIDs, and minimal dairy/processed food/salt/sugar. It is good to keep a food log and try an elimination diet to see if things are tweaking your GI tract and immune system. I otherwise drink kombucha (probiotics are good for "friendly' bacteria), psyllium husk (insoluble fiber for bulk and it supports gut bacteria), and a normal diet. A big issue with IBS, IBD, and especially celiac is social isolation, having friends that accept you as you are. If your friends are schmucks, then find groups that you fit in.
IBS-C is very hard to treat. I have tried every diet. The FODMAP diet does not work for me. It is trial and error to get a balanced gut.
I take a good probiotic. I cannot eat a lot of high fiber foods nor take fiber supplements. Even oatmeal bothers my gut. I am also lactose intolerant. I take Linzess 72mcg at night for IBS-C and this has helped greatly and I take Bentyl for a spastic colon when I have a really bad flare from IBS-C. I am finding that even eating ice cream has now become a culprit....it use to only be drinking milk.
I do find that any added stress flares up my gut. Such as a stomach virus, lack of sleep, etc., Sometimes I cannot figure out what flares it up. IBS-C is very tiring and can flare-up for a couple days to a couple of months. What may work for one person may not work for another person.
Praying for answers for all of you. Blessings & Prayers...
Hi, can I just find a laxative that will work at least occasionally. One week a diet works, next week a nightmare. I have severe chronic motility of entire digestive track. I’ve tried every prescription drug, trust me every single one including the newest IBSrella, made in Massachusetts. Yup, I’m first on the list to try that latest drug but as I wait nothing works. I take 17 laxatives every night. My morning routine is an enema. So you understand My picture, ive had every test, taken every drug, tried different foods, drink all the water it doesn’t work for ibs or motility issues.
What may help you won’t help someone else. It’s a tough day to day adventure just staying hopeful your bowels will love you today,lol. I’ve been doing this for years and I’m 70. My Gastro has no problems with my regimen. It’s now about trying to just keep my colon. The next drug might be out next year.
I try to live my life as best I can and I’m hanging in. It’s better this way because stress makes it worse. One day at a time. Best of luck to you all.
Hi,
My exact problem but caused by Autonomic polyneuropathy. I can't offer any help but can certainly empathise with you and know exactly what you are dealing with, first hand. With ANS the nerves in the gastric tract are compromised and function poorely from top to bottom when they decide to do anything, literally! For me it also causes slow digestion which regularly throws me into SIBO from eating more than a very small portion of food or drink per day. Actually fighting going into another bout of SIBO now and am reduced to bread, water and loading up on Omeprazole.
One medication that helps in that it keeps me regular despite the consistancy is Prucalopride, I'm on 1/4 of a pill and trialing it. It doesn't help otherwise but at least the days of waiting to go are being taken care of. As far as I know it is supposed to draw in fluid to soften the stools, that has not been my experience, yet. Maybe if I can tolerate it and afford it I could move up to 1/2 a pill per day, it is scripted but self funded.
I have gone off most medications as there is not a lot that can be done anyway and I feel better off a lot of them. I'm building an intolerance to medications and am starting to think this ANS and having medication sit so long in the stomach could be responsible. Most medications now have to be injected to get past the stomach.
Stress is the worst enemy to stomach problems. We had an earthquake early this morning at 5.7 magnitude which paniced me and stirred up the gut. Not my first quake, been through bigger, but this one got me, so did this trigger an Autonomic reaction of rapid heart beats and shallow breathing or not. Something else to keep me busy trying to figure out. All is settleing back down now so life goes on for the moment.
Cheers
Hi, Prucalopride has been around a bit. It’s sold also under the name Motegrity. The last drug made was IBSrella. Oh trust me, my Gastro on top of newest drug and when it will come out. A lot of these constipation drugs target impaired motility and or chronic constipation.
IBSrella was covered for me under a trial, but it did nothing. The problem is with these new drugs they cost a small fortune for many, especially if you are on Medicare even with a high end supplemental policy. The company will try to help with coverage but for me, 3 months in, and nothing but bad side effects.
If you google IBSrela the cost is 2343.00. On Medicare it’s 2054.00. It’s anew drug so no generic for years and years. If what you’re on now doesn’t work, ask your doctor about this drug. My motility Gastro doctor said she found it to work in 5 patients and her entire practice is folks like me. Maybe because my case is so severe. I have a tortuous colon too. I’m sure that in itself makes going a bit more difficult.
No stress, go with the flow and always know, someone out there is suffering more than you. Good luck.
Hi,
My meaning was I am trialing it as most oral medications I take I react to. I react to every diabetes T2 oral medication and have eventually had to insist on insulin. I have reacted to every blood pressure medication known but as the side effects of the one I'm on now are lesser than the constant migraines without, I have to put up with the discomfort. The usual problem of taking medication then taking medication to relieve the side effcts of the original medication and so on.
The reality is that Autonomic polyneuropathy has no cure or known treatment so the best I can hope for is some sort of comfort, which I'm currently lacking. It does what it wants when it wants how it wants, I'm just along for the ride, hopeful to get through the day in one piece. There was a time when it occasionally raised it's ugly head but now there are the odd hours when it forgets to be annoying and I get an hour or two of freedom, short lived, but at high pace, to get everything I can crammed into that time it so graciously allows me. Just 3 hours in the last 2 months and greatful for every second of them. These periods bolster me giving the brain and body freedom to do what I know it can do, unrestricted and feeling 40 years younger again. If I knew what it was that shuts down the ANS I would replicate it, even bottle it for others, but I don't. So I'm left with the knowledge I can still have a blinder of a day performing at my peak, praying each moment last a little longer and that one day I might find the switch to give me back my freedom to do as I want, not as I'm made to do.
Hope still lives on regardless.
Cheers
What you have is just terrible. I was wondering have you ever had a pharmacogenetic test. It’s drug gene testing. They can take blood, saliva or cheek cells. It helps to identify what group of drugs give you side effects. The test can identify variations in genes that tell how you process drugs. I’m not sure if that would help you.
Some of these diagnosis most don’t know exist. Trying to locate a doctor is another problem. I wish you more days of feeling great.
Hi,
Yes, still after 13 years of it. The major problem is it is not a disease but a diagnosis given when they run out of names and diseases to label you with. It affects people in many different ways so is hard to give an exact remedy.
The basics are to start the Fodmap plan and note what is OK for you and what is not. Not always successful for everyone! Eventually you will come to recognise the foods you are OK with and the ones you are not.
I survive on very little and mostly food I'm not supposed to be able to eat with IBS, but it works for me confounding my Gastrologist. His attitude is now, if it works for me do it. You can go through times of extreme flare ups to times when you may be reasonably comfortable on a restricted diet. Too many tastes of the "forbiden" fruits can cause havock with the gut. There are loads of theories, heaps of anecdotal evidence and some scientific based facts around IBS. You just have to find your own way through. The help of a good dietitian is a worth while choice to get you started.
Through your journey you will learn about pre and pro biotics and the sceptisism that goes with them. I have tried them and had both good and no results from taking a course of them. Not all probiotics are created equal nor are they all stored the way they should be which means you could be buying dead cultures.
There are times you will be driven to the ragged edge and times you find some success, all you can do is to keep trying. It helped me by remembering that the food we injest is digested and feed to through out the body. The neutriants digested and feed to the body make up what we are, why would you feed it the rubbish you can no longer tolerate!
Dosen't stop me trying though and as usual I suffer the bad flare ups yet again! They are becomming fewer as the brain recognises the discomfort is not worth the pleasure and the lusting subsides. I look at my food as a life line not a pleasure.
Cheers
@cheyne Nice post, good info!
I don’t have ibs but have been on the FODMAP diet for stomach issues. Loved your last paragraph! I’m very slow to learn that I can’t sneak in problem foods and not suffer the consequence.
Hi,
Thanks.
Unfortunately IBS is a big field with many many causes, hence the no particular diagnosis and very little research.
I have a lot more info but without knowing the particulars I'd be wasting a lot of time with irrelevant info for everyone.
I understand how desperate people can get and have come to understand the old adage, we are what we eat.
In the last year I have been diagnosed with Autonomic polyneuropathy which besides being a death sentence, likely quicker than everyone else who eventually die. It has taken control over my digestion leaving me as just a bystander to my health. Along for the ride until I decide I have had enough. No cure , no treatment and just left with suck it and see, then I have to be careful of just what I am sucking as well! Very few medical personnel even understand it if they are aware of it, at all.
Autonomia is one of the two main nervous system in the body, this one controls all we do without thinking, like heart beating, swallowing, and many more functions, that does not include the obvious mistakes we invariably make through absolute stupidity! Although I have been known to hide behind that excuse. So far it has ranged from temporary paralysis of my lower body to restricting the throat, poorly controlling with the bladder and bowels and playing with my blood pressure all when it wants, irrespective of my conscious input. Some of the symptoms are now permanent while others are random and becoming more numerous. At least the upside of this disease is there is nothing to do or try so I just deal with each day as it arrives and am not a bit concerned about the day that doesn't arrive! Death is the final symptom and escape from this disease. In some respects the heart stopping instantly beating without warning beats a long drawn out slow death, as I see it. With my luck it could be any one of the numerous health issues I'm dealing with that takes my life. Then again it could be a simple act of stepping out into traffic without watching what I'm doing.
People keep telling me "crap happens" and I have to say I wish it would! This disease doesn't allow me control of the relevant muscles to get it done, easily.
What is left, hope for something better tomorrow. That is what keeps driving me forward. As long as I don't dwell on my health issues too much, they don't hurt and I can plough on trying not to make too much of a mess of my life.
The real beauty of this disease is I can stir up Dr's without recourse from them. They can't withhold help or treatment that doesn't exist. Of course I equally can't complain about my health treatment, there is none. It is liberating to be able to state my thoughts without meaningful interference from them while challenging their deliberations. They know gobbledygook doesn't fly with me anymore. I have come to understand Dr's are not Gods of medicine, they are no different to you or me, able to be wrong, make mistakes and are just plain "human", the failing of us all!
Cheers
I don't have IBS, but have celiac and IBD(isease). I can't eat gluten, legumes, or NSAIDs, and minimal dairy/processed food/salt/sugar. It is good to keep a food log and try an elimination diet to see if things are tweaking your GI tract and immune system. I otherwise drink kombucha (probiotics are good for "friendly' bacteria), psyllium husk (insoluble fiber for bulk and it supports gut bacteria), and a normal diet. A big issue with IBS, IBD, and especially celiac is social isolation, having friends that accept you as you are. If your friends are schmucks, then find groups that you fit in.
IBS-C is very hard to treat. I have tried every diet. The FODMAP diet does not work for me. It is trial and error to get a balanced gut.
I take a good probiotic. I cannot eat a lot of high fiber foods nor take fiber supplements. Even oatmeal bothers my gut. I am also lactose intolerant. I take Linzess 72mcg at night for IBS-C and this has helped greatly and I take Bentyl for a spastic colon when I have a really bad flare from IBS-C. I am finding that even eating ice cream has now become a culprit....it use to only be drinking milk.
I do find that any added stress flares up my gut. Such as a stomach virus, lack of sleep, etc., Sometimes I cannot figure out what flares it up. IBS-C is very tiring and can flare-up for a couple days to a couple of months. What may work for one person may not work for another person.
Praying for answers for all of you. Blessings & Prayers...
Hi, can I just find a laxative that will work at least occasionally. One week a diet works, next week a nightmare. I have severe chronic motility of entire digestive track. I’ve tried every prescription drug, trust me every single one including the newest IBSrella, made in Massachusetts. Yup, I’m first on the list to try that latest drug but as I wait nothing works. I take 17 laxatives every night. My morning routine is an enema. So you understand My picture, ive had every test, taken every drug, tried different foods, drink all the water it doesn’t work for ibs or motility issues.
What may help you won’t help someone else. It’s a tough day to day adventure just staying hopeful your bowels will love you today,lol. I’ve been doing this for years and I’m 70. My Gastro has no problems with my regimen. It’s now about trying to just keep my colon. The next drug might be out next year.
I try to live my life as best I can and I’m hanging in. It’s better this way because stress makes it worse. One day at a time. Best of luck to you all.
Hi,
My exact problem but caused by Autonomic polyneuropathy. I can't offer any help but can certainly empathise with you and know exactly what you are dealing with, first hand. With ANS the nerves in the gastric tract are compromised and function poorely from top to bottom when they decide to do anything, literally! For me it also causes slow digestion which regularly throws me into SIBO from eating more than a very small portion of food or drink per day. Actually fighting going into another bout of SIBO now and am reduced to bread, water and loading up on Omeprazole.
One medication that helps in that it keeps me regular despite the consistancy is Prucalopride, I'm on 1/4 of a pill and trialing it. It doesn't help otherwise but at least the days of waiting to go are being taken care of. As far as I know it is supposed to draw in fluid to soften the stools, that has not been my experience, yet. Maybe if I can tolerate it and afford it I could move up to 1/2 a pill per day, it is scripted but self funded.
I have gone off most medications as there is not a lot that can be done anyway and I feel better off a lot of them. I'm building an intolerance to medications and am starting to think this ANS and having medication sit so long in the stomach could be responsible. Most medications now have to be injected to get past the stomach.
Stress is the worst enemy to stomach problems. We had an earthquake early this morning at 5.7 magnitude which paniced me and stirred up the gut. Not my first quake, been through bigger, but this one got me, so did this trigger an Autonomic reaction of rapid heart beats and shallow breathing or not. Something else to keep me busy trying to figure out. All is settleing back down now so life goes on for the moment.
Cheers
Hi, Prucalopride has been around a bit. It’s sold also under the name Motegrity. The last drug made was IBSrella. Oh trust me, my Gastro on top of newest drug and when it will come out. A lot of these constipation drugs target impaired motility and or chronic constipation.
IBSrella was covered for me under a trial, but it did nothing. The problem is with these new drugs they cost a small fortune for many, especially if you are on Medicare even with a high end supplemental policy. The company will try to help with coverage but for me, 3 months in, and nothing but bad side effects.
If you google IBSrela the cost is 2343.00. On Medicare it’s 2054.00. It’s anew drug so no generic for years and years. If what you’re on now doesn’t work, ask your doctor about this drug. My motility Gastro doctor said she found it to work in 5 patients and her entire practice is folks like me. Maybe because my case is so severe. I have a tortuous colon too. I’m sure that in itself makes going a bit more difficult.
No stress, go with the flow and always know, someone out there is suffering more than you. Good luck.
Hi,
My meaning was I am trialing it as most oral medications I take I react to. I react to every diabetes T2 oral medication and have eventually had to insist on insulin. I have reacted to every blood pressure medication known but as the side effects of the one I'm on now are lesser than the constant migraines without, I have to put up with the discomfort. The usual problem of taking medication then taking medication to relieve the side effcts of the original medication and so on.
The reality is that Autonomic polyneuropathy has no cure or known treatment so the best I can hope for is some sort of comfort, which I'm currently lacking. It does what it wants when it wants how it wants, I'm just along for the ride, hopeful to get through the day in one piece. There was a time when it occasionally raised it's ugly head but now there are the odd hours when it forgets to be annoying and I get an hour or two of freedom, short lived, but at high pace, to get everything I can crammed into that time it so graciously allows me. Just 3 hours in the last 2 months and greatful for every second of them. These periods bolster me giving the brain and body freedom to do what I know it can do, unrestricted and feeling 40 years younger again. If I knew what it was that shuts down the ANS I would replicate it, even bottle it for others, but I don't. So I'm left with the knowledge I can still have a blinder of a day performing at my peak, praying each moment last a little longer and that one day I might find the switch to give me back my freedom to do as I want, not as I'm made to do.
Hope still lives on regardless.
Cheers
What you have is just terrible. I was wondering have you ever had a pharmacogenetic test. It’s drug gene testing. They can take blood, saliva or cheek cells. It helps to identify what group of drugs give you side effects. The test can identify variations in genes that tell how you process drugs. I’m not sure if that would help you.
Some of these diagnosis most don’t know exist. Trying to locate a doctor is another problem. I wish you more days of feeling great.