IBS

Preset No.3 · 11-09-2015 12:43am

I went to see a alternative treatment doctor. From that he has put me on:

5-HTP
Vitamin D3
Polyzyme Forte
Orac Omega
Vitamin B6

I get 1 or 2 IBS episodes a year now which I combat with some buscopan and usually clears up after 2-3 days.

sullivlo · 11-09-2015 1:25am

Strawberry Swan wrote: »

I'd normally eat a sandwich before a run. It would be roughly three hours before. I don't take any supplements. I'm gonna try running in the morning when my stomach is empty. I get D on the days I don't run too. It's usually every day or second day.

I'd like to do Fodmap all at once but I'm wary of not getting enough nutrients, especially giving up the legumes which would be a source of a lot of my protein. I'll study the food groups more closely to see if I can do it while getting enough nutrients.

Just be careful with FODMAP. Some foods contain more than one FODMAP so don't just cut out particular food groups - cut out the individual FODMAP. Will take a long time too - 6 weeks of avoiding per FODMAP.

El_Dangeroso · 11-09-2015 9:11am

Preset No.3 wrote: »

I went to see a alternative treatment doctor. From that he has put me on:

5-HTP
Vitamin D3
Polyzyme Forte
Orac Omega
Vitamin B6

I get 1 or 2 IBS episodes a year now which I combat with some buscopan and usually clears up after 2-3 days.

Were you C or D out of interest?

witchgirl26 · 11-09-2015 11:32am

Strawberry Swan wrote: »

I'd normally eat a sandwich before a run. It would be roughly three hours before. I don't take any supplements. I'm gonna try running in the morning when my stomach is empty. I get D on the days I don't run too. It's usually every day or second day.

I'd like to do Fodmap all at once but I'm wary of not getting enough nutrients, especially giving up the legumes which would be a source of a lot of my protein. I'll study the food groups more closely to see if I can do it while getting enough nutrients.

Would you consider going to someone trained in Fodmap rather than trying to do it yourself considering your concerns?

Strawberry Swan · 11-09-2015 6:50pm

I cant afford to unfortunately.

Anna1976 · 12-10-2015 4:44pm

I have had the Fitzwilliam food intolerance test done and I now know what foods I am intolerant to, so would there be any point in me trying fodmap?

El_Dangeroso · 12-10-2015 5:03pm

Anna1976 wrote: »

I have had the Fitzwilliam food intolerance test done and I now know what foods I am intolerant to, so would there be any point in me trying fodmap?

Sorry to say it but those food intolerance tests are very unreliable. People can enter in two of the same samples but get different results.

By all means give it a go, but FODMAPs is the only scientifically proven diet for IBS.

sullivlo · 12-10-2015 11:31pm

Anna1976 wrote: »

I have had the Fitzwilliam food intolerance test done and I now know what foods I am intolerant to, so would there be any point in me trying fodmap?

It depends. Have you still got symptoms after removing the foods you're intolerant to from your diet?

Anna1976 · 15-10-2015 9:50am

sullivlo wrote: »

It depends. Have you still got symptoms after removing the foods you're intolerant to from your diet?

I have only reduced the foods I am intolerant to because there were so many. I am intolerant to all dairy, gluten, rice, some nuts, eggs, and probably more I can't remember at the moment. It seemed like such a huge step to remove all these from my diet. I've been unwell for 2 years now but was only diagnosed 1 month ago after having numerous other tests done to rule everything else out. I am taking 2 fybogel a day, which I find very good. My doctor prescribed colofac and Ive been taking that for a month but I don't find it makes any difference. I have just started taking alflorex so I will see how I get on with that.

sullivlo · 15-10-2015 10:56am

Anna1976 wrote: »

I have only reduced the foods I am intolerant to because there were so many. I am intolerant to all dairy, gluten, rice, some nuts, eggs, and probably more I can't remember at the moment. It seemed like such a huge step to remove all these from my diet. I've been unwell for 2 years now but was only diagnosed 1 month ago after having numerous other tests done to rule everything else out. I am taking 2 fybogel a day, which I find very good. My doctor prescribed colofac and Ive been taking that for a month but I don't find it makes any difference. I have just started taking alflorex so I will see how I get on with that.

Well perhaps it might be more beneficial to completely cut out the food you are intolerant to first to see whether a reduction in this food reduces your symptoms. If it doesn't then FODMAP may be an option. However if you think that cutting out dairy, gluten, rice etc, is difficult, you will have a really tough time with the FODMAP stuff. It's really hard.

I found trough trial and error that it takes time, patience and hard work. Cutting food from a diet is tough, but essential if you want to get better.

Things take time though. And you need to be systematic about it too. There's no point in trying 3 things simultaneously - you need to do things one at a time, and for an extended period of time.

There are other antispasmodic tablets you can try too. Buscopan, spasmonal, colpermin - I take them depending on the different types of pain I get.

You could try linking in with a dietician if you think it would help.

I was discharged by my GI the other day. He said I've my symptoms under control and a good understanding of what is needed on a day to day basis for maintenance. He wants me to check in with him in a year to get more tests done to ensure the symptoms aren't masking anything sinister, and if I'm sent to a&e again I have to call his team and they will see me there during a flare. But progress.

witchgirl26 · 15-10-2015 11:32am

Anna1976 wrote: »

I have only reduced the foods I am intolerant to because there were so many. I am intolerant to all dairy, gluten, rice, some nuts, eggs, and probably more I can't remember at the moment. It seemed like such a huge step to remove all these from my diet. I've been unwell for 2 years now but was only diagnosed 1 month ago after having numerous other tests done to rule everything else out. I am taking 2 fybogel a day, which I find very good. My doctor prescribed colofac and Ive been taking that for a month but I don't find it makes any difference. I have just started taking alflorex so I will see how I get on with that.

That sounds like an awful lot of foods to be intolerant to. Were they able to give you a level of intolerance? Also I'd be wary of anyone other than a doctor diagnosing a gluten intolerance as being coeliac is a big thing. If tests ruled out coeliac previously then I doubt you have a full gluten intolerance.

Personally I think fodmaps is good as it's the only scientifically proven & documented diet for IBS. I'm wary of any intolerances tests that aren't done by doctors.

Anna1976 · 15-10-2015 12:58pm

sullivlo wrote: »

Well perhaps it might be more beneficial to completely cut out the food you are intolerant to first to see whether a reduction in this food reduces your symptoms. If it doesn't then FODMAP may be an option. However if you think that cutting out dairy, gluten, rice etc, is difficult, you will have a really tough time with the FODMAP stuff. It's really hard.

I found trough trial and error that it takes time, patience and hard work. Cutting food from a diet is tough, but essential if you want to get better.

Things take time though. And you need to be systematic about it too. There's no point in trying 3 things simultaneously - you need to do things one at a time, and for an extended period of time.

There are other antispasmodic tablets you can try too. Buscopan, spasmonal, colpermin - I take them depending on the different types of pain I get.

You could try linking in with a dietician if you think it would help.

I was discharged by my GI the other day. He said I've my symptoms under control and a good understanding of what is needed on a day to day basis for maintenance. He wants me to check in with him in a year to get more tests done to ensure the symptoms aren't masking anything sinister, and if I'm sent to a&e again I have to call his team and they will see me there during a flare. But progress.

I'm so new to this, and there seems to be so much differing advice out there. Although the fodmap seems to be the one thing people agree on, so I probably will look into this more. The cramps wouldn't be my main concern, its the D and C, and the worry of travelling, days out etc. I have had a few bad expierences and it has knocked my confidence hugely.

Anna1976 · 15-10-2015 1:43pm

witchgirl26 wrote: »

That sounds like an awful lot of foods to be intolerant to. Were they able to give you a level of intolerance? Also I'd be wary of anyone other than a doctor diagnosing a gluten intolerance as being coeliac is a big thing. If tests ruled out coeliac previously then I doubt you have a full gluten intolerance.

Personally I think fodmaps is good as it's the only scientifically proven & documented diet for IBS. I'm wary of any intolerances tests that aren't done by doctors.

They did give me level's of intolerance which I must check again. I have been tested for coeliac twice and it was negative both times. There are a couple of foods that definately don't suit me (rice and white bread) so I have cut these out completely, but the rest I'm not sure about. I also think anxiety plays a big part in my flare ups, so I have started taking passiflora drops to see if they will help with that.

witchgirl26 · 15-10-2015 2:03pm

Anna1976 wrote: »

They did give me level's of intolerance which I must check again. I have been tested for coeliac twice and it was negative both times. There are a couple of foods that definately don't suit me (rice and white bread) so I have cut these out completely, but the rest I'm not sure about. I also think anxiety plays a big part in my flare ups, so I have started taking passiflora drops to see if they will help with that.

If you've been tested for coeliac twice & it was negative that I sincerely doubt you have a gluten intolerance. As it would even show up a mild one on those tests.

Anna1976 · 21-10-2015 3:20pm

I'm awake since 5 a.m. this morning with stomach pain/cramps. This is very unusual for me, I always have symptoms during the day but never during the night before. Maybe its a tummy bug and not related to IBS at all, but I was just wondering if anyone else experienced symptoms during the night. Also I have heard people talk about flare ups every few months or so, this is something I have not experienced, at most I get 2 or 3 good days in a row, has anyone else been the same? Also I suffer mainly with D but at time C aswell is this normal??

kennyb3 · 23-11-2015 1:07pm

El_Dangeroso wrote: »

The best 'medication' I've found is Krill oil + vitamin D. Calms the gut inflammation right down (for some reason NSAIDs make the situation worse). In my experience a short course of 4 weeks is all that's necessary.

Hi El_Dangeroso,

Any particular krill oil you use?

So many listed here.

Unfortunately I'll prob be checking in around here. Developed serious stomach pain in late August. Following Ultrasound for gallbladder issue, blood tests, an upper endoscope, colonoscopy and small bowel mri - the consultant says I've bile reflux and IBS (found a spastic colon during colonoscopy).

My motility has slowed right down and every stool is now hard and bally with muscus attached.

My inital pain only subsided briefly after 8 weeks and is now back again after a 10/2 week break. Only really coming to terms with the whole thing and what it involves. Drinking coffee etc when i felt bit better certainly didn't help!

El_Dangeroso · 23-11-2015 2:30pm

kennyb3 wrote: »

Hi El_Dangeroso,

Any particular krill oil you use?

So many listed here.

Unfortunately I'll prob be checking in around here. Developed serious stomach pain in late August. Following Ultrasound for gallbladder issue, blood tests, an upper endoscope, colonoscopy and small bowel mri - the consultant says I've bile reflux and IBS (found a spastic colon during colonoscopy).

My motility has slowed right down and every stool is now hard and bally with muscus attached.

My inital pain only subsided briefly after 8 weeks and is now back again after a 10/2 week break. Only really coming to terms with the whole thing and what it involves. Drinking coffee etc when i felt bit better certainly didn't help!

Hi there, just the plain one is fine, no need for anything else with it.

Sounds like you're dealing with a lot more than IBS at the moment though! Though I'm envious you got an endoscopy, I'm still on the waiting list.
_____________________________________

I'm still dealing with motility issues. I can only eat really small meals now otherwise I'm nauseous and in pain for hours.

I've managed to track down a crowd in the US that does SIBO testing:

http://www.metsol.com/hydrogen-breath-test/

I had to contact them directly as they don't allow non-US ordering through the site. Cost around €140 but if it helps me discover and fix what's going on I don't mind

They check for both hydrogen and methane. No hospital in Ireland does this yet.

I'll let you all know how I get on.

kennyb3 · 23-11-2015 3:28pm

El_Dangeroso wrote: »

Hi there, just the plain one is fine, no need for anything else with it.

Sounds like you're dealing with a lot more than IBS at the moment though! Though I'm envious you got an endoscopy, I'm still on the waiting list.
_____________________________________

I'm still dealing with motility issues. I can only eat really small meals now otherwise I'm nauseous and in pain for hours.

I've managed to track down a crowd in the US that does SIBO testing:

http://www.metsol.com/hydrogen-breath-test/

I had to contact them directly as they don't allow non-US ordering through the site. Cost around €140 but if it helps me discover and fix what's going on I don't mind

They check for both hydrogen and methane. No hospital in Ireland does this yet.

I'll let you all know how I get on.

Thanks El_D.

I see a hydrogen test here (though it's not a recognised hospital). Is the methane required?

As regards the endoscope I went private and self paid (health insurance was insufficient) for that and the other test as initially I was in very significant pain and very worried so this has been a very expensive problem (€3kish so far).

All came on very accuately one Friday after a can of baked beans - no signs up to then other than having a pain in my tummy after eating sweet potato or sweet corn (both only developed in last couple of years so maybe that was a sign of things to come).

A week before that Friday that I could drink alcohol and eat takeaway. All very weird. Hence my feeling of needing to get it all checked asap (I've 2 young kids I was worried about and my wife is a nurse so she pushed me)

I was convinced all along with would be h pylori - now i wish it was - the CLO test was negative from my scope though.

El_Dangeroso · 23-11-2015 3:49pm

kennyb3 wrote: »

Thanks El_D.

I see a hydrogen test here (though it's not a recognised hospital). Is the methane required?

As regards the endoscope I went private and self paid (health insurance was insufficient) for that and the other test as initially I was in very significant pain and very worried so this has been a very expensive problem (€3kish so far).

All came on very accuately one Friday after a can of baked beans - no signs up to then other than having a pain in my tummy after eating sweet potato or sweet corn (both only developed in last couple of years so maybe that was a sign of things to come).

A week before that Friday that I could drink alcohol and eat takeaway. All very weird. Hence my feeling of needing to get it all checked asap (I've 2 young kids I was worried about and my wife is a nurse so she pushed me)

I was convinced all along with would be h pylori - now i wish it was - the CLO test was negative from my scope though.

I hear you on wishing it was H.Pylori, so nice to be able to take a triple antibiotic and be done with it!

Ouch on endoscopy costs, that's why I'm holding out on going public for mine, when that will happen is another story! Did the endoscopy reveal anything? My doc suspects hiatal hernia causing some of my symptoms.

Good site there, I didn't know about those guys, I bet if they do hydrogen they will do methane too. You can email them to check.

Methane is way more predictive of SIBO than hydrogen, hydrogen presence can signify a false positive but methane is a very accurate indicator. Also methane correlates very strongly with constipation, so if that's an issue for you then it's the one to look out for.

If these tests come back positive then there's an antibiotic protocol to follow which should provide great relief.

kennyb3 · 23-11-2015 4:24pm

El_Dangeroso wrote: »

I hear you on wishing it was H.Pylori, so nice to be able to take a triple antibiotic and be done with it!

Ouch on endoscopy costs, that's why I'm holding out on going public for mine, when that will happen is another story! Did the endoscopy reveal anything? My doc suspects hiatal hernia causing some of my symptoms.

Good site there, I didn't know about those guys, I bet if they do hydrogen they will do methane too. You can email them to check.

Methane is way more predictive of SIBO than hydrogen, hydrogen presence can signify a false positive but methane is a very accurate indicator. Also methane correlates very strongly with constipation, so if that's an issue for you then it's the one to look out for.

If these tests come back positive then there's an antibiotic protocol to follow which should provide great relief.

The endoscope revealed the bile reflux. The consultant seemed a bit unfussed by it. Told me to eat a low fat diet and that was really it. Said I'd a sensitive stomach - yet I've eaten chinese, indian etc in past with no issues (nad binge drank through early 20's - early 30's now) He is a brilliant doctor apparently but he seems a bit disappointing on the what to do next and how to deal with it side of things. Just gives the clinical results!

Thanks some great info there - I know you've been reading on this stuff for a while as it's been an issue for you for longer - I'm still getting stuff clear in my head and it can be confusing at times.

Most of the stuff seems to be aimed at IBS D too.

I'm only starting to learn about things like SIBO and FMT etc.

I think my next route will be going to a nutritionist and trying low fodmaps. I've already gone largely gluten free and lactose free and stay away from things high in fodmaps in last couple of weeks but will go seek some professional advice (need to save again for this!). It's very hard as I'm losing weight on an ongoing basis as there really isn't enough calories in gluten free cornflakes, a gluten free sandwich at lunch and chicken and rice for dinner. Really struggling to eat enough calories. Lost nearly a stone since it started and at 10st 5 now at 5'8. Really trying not to head towards 10stone.

Will you try the hydrogen test?

I guess i need to read more on these things before wildly spending more money.

El_Dangeroso · 23-11-2015 4:30pm

kennyb3 wrote: »

The endoscope revealed the bile reflux. The consultant seemed a bit unfussed by it. Told me to eat a low fat diet and that was really it. Said I'd a sensitive stomach - yet I've eaten chinese, indian etc in past with no issues (nad binge drank through early 20's - early 30's now) He is a brilliant doctor apparently but he seems a bit disappointing on the what to do next and how to deal with it side of things. Just gives the clinical results!

Thanks some great info there - I know you've been reading on this stuff for a while as it's been an issue for you for longer - I'm still getting stuff clear in my head and it can be confusing at times.

Most of the stuff seems to be aimed at IBS D too.

I'm only starting to learn about things like SIBO and FMT etc.

I think my next route will be going to a nutritionist and trying low fodmaps. I've already gone largely gluten free and lactose free and stay away from things high in fodmaps in last couple of weeks but will go seek some professional advice (need to save again for this!). It's very hard as I'm losing weight on an ongoing basis as there really isn't enough calories in gluten free cornflakes, a gluten free sandwich at lunch and chicken and rice for dinner. Really struggling to eat enough calories. Lost nearly a stone since it started and at 10st 5 now at 5'8. Really trying not to head towards 10stone.

Will you try the hydrogen test?

I guess i need to read more on these things before wildly spending more money.

I just got the hydrogen/methane breath test kit today, will be doing it tomorrow and sending it off to the US, will let you know the results.

Fodmaps is so great when you try it first, it definitely helps me but I want to be able to eat out again so am looking for a longer term fix.

I just did it myself based on the app that you can download that tells you what is/isn't safe. Here's a handy chart if you want to get going straight away.

http://www.ibsgroup.org/brochures/fodmap-intolerances.pdf

Sounds like from your baked beans experience you're intolerant to galactans so at least you know that straight away!

kennyb3 · 23-11-2015 4:43pm

Thanks would appreciate any update. I'll e-mail gastrolife too when i get some time (it came up in google when entering sibo ireland btw).

They also do it here (not sure why it's €40 more expensive?) but you need a GP referral letter too.

PS Anyone any idea's on how to get sufficient calories in on a low fodmap diet? Everything seems to be lower calorie - gluten free bread, lactose free milk and i don't want to be stuffing myself with low calorie food as everytime i eat i get pain after anyway.

El_Dangeroso · 23-11-2015 4:50pm

kennyb3 wrote: »

Thanks would appreciate any update. I'll e-mail gastrolife too when i get some time (it came up in google when entering sibo ireland btw).

They also do it here (not sure why it's €40 more expensive?) but you need a GP referral letter too.

PS Anyone any idea's on how to get sufficient calories in on a low fodmap diet? Everything seems to be lower calorie - gluten free bread, lactose free milk and i don't want to be stuffing myself with low calorie food as everytime i eat i get pain after anyway.

Lactose free milk and gluten free bread are not lower calorie, sometime GF bread is higher calorie in fact!

You can eat meat and hard cheeses liberally so not hard to keep up enough cals eating bacon and cheese trust me!

ScumLord · 23-11-2015 4:58pm

I'm finding it's almost entirely related to stress. I've had cameras stuck in every orifice, MRIs done, ultrasound. There's apparently nothing wrong with me. But it keeps me awake at night, like there's a snake moving furniture inside my bowls. Pretty bad pain as if my bowel is going to rip. Staying up all night just makes me more stressed.

Thing is it completely disappears when I go on holiday. I can eat what I want and suffer no ill effects at all. Here if I eat my bowels go mental, I've even tried not eating and that just makes it worse. So I don't buy into these diets, I don't think anything in particular sets it off.

El_Dangeroso · 23-11-2015 4:59pm

ScumLord wrote: »

I'm finding it's almost entirely related to stress. I've had cameras stuck in every orifice, MRIs done, ultrasound. There's apparently nothing wrong with me. But it keeps me awake at night, like there's a snake moving furniture inside my bowls. Pretty bad pain as if my bowel is going to rip. Staying up all night just makes me more stressed.

Thing is it completely disappears when I go on holiday. I can eat what I want and suffer no ill effects at all. Here if I eat my bowels go mental, I've even tried not eating and that just makes it worse. So I don't buy into these diets, I don't think anything in particular sets it off.

Be careful not to generalise your own experience upon everyone else.

I have no stress in my life right now and I've never been sicker. In fact I was way more stressed this time last year and I could eat anything I want (and had the gain on the scales to prove it

)

kennyb3 · 23-11-2015 5:13pm

El_Dangeroso wrote: »

Lactose free milk and gluten free bread are not lower calorie, sometime GF bread is higher calorie in fact!

You can eat meat and hard cheeses liberally so not hard to keep up enough cals eating bacon and cheese trust me!

Thanks the avonmore milk i think is 37kcal per 100ml compared to 64kcal per 100ml for full fat. And I just picked up the GF bread i had the other day and it was 10/15kcals lower than the lidl wholegrain one. Anyway it's marginal enough i guess - think i'm fretting over going from 11stone 3 to 10stone 5 in 2.5months. Stressing doesn't help either.

kennyb3 · 23-11-2015 5:14pm

ScumLord wrote: »

I'm finding it's almost entirely related to stress. I've had cameras stuck in every orifice, MRIs done, ultrasound. There's apparently nothing wrong with me. But it keeps me awake at night, like there's a snake moving furniture inside my bowls. Pretty bad pain as if my bowel is going to rip. Staying up all night just makes me more stressed.

Thing is it completely disappears when I go on holiday. I can eat what I want and suffer no ill effects at all. Here if I eat my bowels go mental, I've even tried not eating and that just makes it worse. So I don't buy into these diets, I don't think anything in particular sets it off.

Stress definitely makes my stomach sorer but being stress free doesn't make it go away for me anyway (so far).

El_Dangeroso · 23-11-2015 7:19pm

kennyb3 wrote: »

Thanks the avonmore milk i think is 37kcal per 100ml compared to 64kcal per 100ml for full fat. And I just picked up the GF bread i had the other day and it was 10/15kcals lower than the lidl wholegrain one. Anyway it's marginal enough i guess - think i'm fretting over going from 11stone 3 to 10stone 5 in 2.5months. Stressing doesn't help either.

Oh that's just from being low fat, add some lactose free cream in to make up the difference

TBH I've never had problems getting enough cals on a fodmap diet. When bacon cheese chips are fodmap free, I don't think you will either

kennyb3 · 23-11-2015 9:59pm

El_Dangeroso wrote: »

Oh that's just from being low fat, add some lactose free cream in to make up the difference TBH I've never had problems getting enough cals on a fodmap diet. When bacon cheese chips are fodmap free, I don't think you will either

See its this whole bile reflux thing that has my head messed up - consultant said to eat low fat and stick to lean meat.

I feel the two are linked - bile issue and ibs but not sure which is chicken and egg.

I'm not even sure the bile is an ongoing issue or if it was even always there. Just that the consultant saw it during endoscope.

El_Dangeroso · 23-11-2015 10:29pm

kennyb3 wrote: »

See its this whole bile reflux thing that has my head messed up - consultant said to eat low fat and stick to lean meat.

I feel the two are linked - bile issue and ibs but not sure which is chicken and egg.

I'm not even sure the bile is an ongoing issue or if it was even always there. Just that the consultant saw it during endoscope.

Coconut oil needs no bile to be digested, so you can have coconut milk curries etc. They even make coconut milk ice-cream, just watch out for 'gums' in the ingredients, those are big fodmaps.

TBH, if you stop the rampant gas production from the fodmaps, the bile reflux might not bother you any more, worth a go.

witchgirl26 · 24-11-2015 10:38am

I'm just on the reintroduction to foods from the low-fodmap diet & finding it's really making a difference. I've learnt my tolerance level of a couple & starting a new intro this week.

For those that are saying they are on a low-fodmap diet, is that on a continuous basis or are you trying to reintroduce some of the higher fodmap stuff? I ask because when I talked to my dietician about it she said it's actually bad for your gut in the long run to stay on a solely low-fodmap diet & that you should try to reintroduce as many normal foods as possible as soon as the 4-6 week low-fodmap section is up. I've successfully brought wheat back in a small amount which is nice.

I was also warned to watch the gluten free products as often they have other ingredients which do interact with IBS per fodmap in them as substitutes.

After 10 years of bad IBS, the last 2 being particularly bad, I'm finally finding this is making a difference to how I feel in general as well as easing all my symptoms.

El_Dangeroso · 24-11-2015 10:54am

witchgirl26 wrote: »

I'm just on the reintroduction to foods from the low-fodmap diet & finding it's really making a difference. I've learnt my tolerance level of a couple & starting a new intro this week.

For those that are saying they are on a low-fodmap diet, is that on a continuous basis or are you trying to reintroduce some of the higher fodmap stuff? I ask because when I talked to my dietician about it she said it's actually bad for your gut in the long run to stay on a solely low-fodmap diet & that you should try to reintroduce as many normal foods as possible as soon as the 4-6 week low-fodmap section is up. I've successfully brought wheat back in a small amount which is nice.

I was also warned to watch the gluten free products as often they have other ingredients which do interact with IBS per fodmap in them as substitutes.

After 10 years of bad IBS, the last 2 being particularly bad, I'm finally finding this is making a difference to how I feel in general as well as easing all my symptoms.

Yes, you shouldn't stay off all fodmaps permanently as it's way too low in fibre. But I've been sick for 6 months and it's all I can do to function, so I have to stay off all, seems like I'm reacting to them all right now.

witchgirl26 · 24-11-2015 12:24pm

El_Dangeroso wrote: »

Yes, you shouldn't stay off all fodmaps permanently as it's way too low in fibre. But I've been sick for 6 months and it's all I can do to function, so I have to stay off all, seems like I'm reacting to them all right now.

Oh that is not good. I found I reacted a bit on all of them so fair - day 2 of 3 seems to be my comfort zone for the intros.

If it's been that bad for 6 months though, I'd be banging down the doctors door looking for something to be done. Hope it starts easing up on you soon.

El_Dangeroso · 26-11-2015 6:35pm

Got my gastroscopy appt for next Friday! I've never been so excited for a camera being shoved down my throat before!

I'm hoping between this and the hydrogen breath test has got to turn up something.

Finally can see a light at the end of the tunnel, whether it's an oncoming train is another matter..

kennyb3 · 26-11-2015 9:32pm

Great news, let us know how it goes.

PsychoSue · 31-12-2015 12:34am

I've had IBS D since I was about 16, suffered in silence for so long as we didn't go to the doc in our house unless you had bullets in you lol.... Eventually at 18 I couldn't cope with the pain of an attack I had to go. Low and behold the pains had disappeared by the next day but thankfully my doc listened to me and the long trial and error, back and forth drama started. He suspected IBS straight off but didn't diagnose me until about 5/6 months later.
I'm 31 now and reading this thread is the first time I've heard of fodmop!!! In a sense I've kind of done my own version. I know how inconclusive and unreliable some of those food intolerance tests can be so when I was 19 and in college and REALLY suffering (stress is a huge trigger for me) I literally spent a week eating porridge and water and slowly introduced other bland unprocessed food and devised my own list of triggers.
It's not a full list as I only did the basics, the main things I eat and then just dived into whatever.
I did a cleanse last year, started taking probiotics, fish oils and committed to eating 100% clean and I was symptom free through out, everything ran as it should and like clockwork but I lost the run of myself after a few months and went on a "food bender" I ate what I wanted and when I wanted. My IBS symptoms slowly started to show up again but not as aggressive as before THANK GOD but I couldn't take it so I did another cleanse in the summer and started the probiotics and fish oils AND an exercise plan. I felt fantastic within a week and again my body was in check and everything running as it should but in Nov things got a tad hard for me and I suppose I got a lil lazy, I stopped eating so well and I'm starting to get some symptoms again, not major (occasional d and cramps and bloating) but I'm jumping back on the clean eating train in the morning....

El_Dangeroso · 31-12-2015 2:33pm

Oh I forgot to update this thread. Had colonoscopy and gastroscopy.

Found stomach ulcer which was caused by h. pylori and explains a lot of my symptoms.

I took the triple therapy to get rid of the h. pylori and good god it was hard. I basically went though 5 weeks of being unable to eat more than a few bites of food at a time. I couldn't even eat xmas dinner! I kept going back to the doctor and they said to be patient that it would start to heal but that's easy to say when you're not living every day afraid of eating!

Two days ago I finally turned the corner and can eat small meals again without feeling bad. Not 100% better but it feels like a total turnaround compared to the past few weeks.

El_Dangeroso · 25-01-2016 9:50pm

Anyone interested in getting a faecal microbial transplant done and live in the Cork region?

https://clinicaltrials.gov/ct2/show/NCT02423421?term=fecal+microbiota+transplant+AND+irritable+bowel&rank=7

Now you have a 50% chance of ending up in the placebo group but it's €8K to get this done in the UK, so if I was living near Cork I'd give it a go.

failinis · 27-07-2016 11:30pm

livedadream pointed me to here, thanks!

I don't think I have IBS, but its the best guess they have for now.
Is it normal to do an introduction and backstory? :pac:

Never, ever, found it easy to ****e to put it bluntly

From birth onwards, always constipated.
When I was 2yrs-3yrs my GP made my mum put me on a gluten free diet for a year, seemed to work for a few weeks but almost went back to just as bad for the rest of the months.
Primary 1 teacher told my mum I used to scream and cry in the loo

embarrassing as I never knew that as I was so young ha.
As I grew up I got more private and embarrassed by bodily functions, so I hid the fact I have severe constipation from mum/drs for years.
Finally, one day out of the blue, just decided to tell my GP, who just said woah you are likely impacted, here is some Laxido (which after a week finally worked slowly and gradually).
However if I do not take 1-2 sachets of Laxido a day, then I will be unable to go for about a week until it settled back down, diet changes seem to do little.

Had severe stomach pain for 2yrs which was ignored, finally got a endoscopy, no h.p whatever, but a pre- ulcer and stomach was bleeding heavily.
Was more than likely caused by medication I started, 2 years previous, plus ulcers is one of those less common side effects, so I came off the medication.
Took me about, no joke, 8 months to heal. Other medical problems mean I have very hard time healing but touch wood its calmed down.
So severe stomach pain and upset had cause diet problems as it is, never mind this almost constant constipation.
During endoscopy they took samples to test, celiac came back negative which was a shock, as eating gluten makes me sore. Pancake day? I am in bed crying with cramps. (I ate gluten heavy foods for 8 weeks before my endoscopy so that damn sample would show something if it was there!)

Just found out yesterday I have an ovarian cyst, so going to see GP tomorrow and helpfully referred to gyno etc ASAP, so I bet that did not help bloating and generic abdominal pain.

So for now, Laxido is my saviour, but not 100% all the time.

So, I am happy to find a place where people "get" this kinda stuff.

witchgirl26 · 28-07-2016 11:32am

failinis - god sounds like you've been through the ringer! I hope things start getting a bit sorted for you soon on the other medical aspects. I always find that if my body is dealing with anything else, my IBS is the first to go. I was told by my doctor that IBS was the diagnosis they give when they know you have something wrong with your bowel but it doesn't fall into any of the other noted syndromes (crohns etc)

So six months after finishing fodmaps, my life is my own again!! For the past 2 months I've not taken any meds before meals (which I had to since about 22), buscopan has been taken a couple of times but more as a "just in case". Bloating is easing & I'm feeling so much better. I've even been advised on how to try to introduce some lactose containing products into my diet to test my level of lactose intolerance. I'm a little excited about maybe being able to have some cheese or ice-cream (little things). I don't feel like I have to monitor everything I eat anymore & I don't worry about going out to eat anymore. Would defo recommend fodmaps to anyone. So worth it!

failinis · 28-07-2016 12:31pm

witchgirl26 wrote: »

failinis - god sounds like you've been through the ringer! I hope things start getting a bit sorted for you soon on the other medical aspects. I always find that if my body is dealing with anything else, my IBS is the first to go. I was told by my doctor that IBS was the diagnosis they give when they know you have something wrong with your bowel but it doesn't fall into any of the other noted syndromes (crohns etc)

So six months after finishing fodmaps, my life is my own again!! For the past 2 months I've not taken any meds before meals (which I had to since about 22), buscopan has been taken a couple of times but more as a "just in case". Bloating is easing & I'm feeling so much better. I've even been advised on how to try to introduce some lactose containing products into my diet to test my level of lactose intolerance. I'm a little excited about maybe being able to have some cheese or ice-cream (little things). I don't feel like I have to monitor everything I eat anymore & I don't worry about going out to eat anymore. Would defo recommend fodmaps to anyone. So worth it!

My brother said the same (about IBS being the "go to" cause for unspecified problems) - me and my brother are suspected of having a genetic condition effecting connective tissue, me and him have exact same gatrointesional problems (and other issues) so thats under investigation.

If they could just tell me what is wrong and I could ever find a bloody diet that would help, it would be like winning the lotto.

My diets been up in the air with that pre-ulcer, I finally am starting to eat normally but I previously had stomach problems with undetermined causes.

I really am a nightmare for doctors. Lost so much weight.

Sounds fantastic, how far you seem to have come now, good luck reintroducing a little cheese or ice-cream!

witchgirl26 · 28-07-2016 12:43pm

failinis wrote: »

My brother said the same (about IBS being the "go to" cause for unspecified problems) - me and my brother are suspected of having a genetic condition effecting connective tissue, me and him have exact same gatrointesional problems (and other issues) so thats under investigation.

If they could just tell me what is wrong and I could ever find a bloody diet that would help, it would be like winning the lotto.

My diets been up in the air with that pre-ulcer, I finally am starting to eat normally but I previously had stomach problems with undetermined causes.
I really am a nightmare for doctors. Lost so much weight.

Sounds fantastic, how far you seem to have come now, good luck reintroducing a little cheese or ice-cream!

Thanks! I'd love to just treat myself to it every so often. Before my lactose intolerance hit full force, I was able to eat both at times & just milk & cream bothered me. Hoping I can get back to that.

I feel you on the nightmare for doctors & the weight. I was so underweight at one point that I was told by my doctor if I didn't improve, he'd have to send me to a feeding clinic for eating disorders (even though we all knew I didn't have one) just to help get my weight back up. Luckily that didn't have to happen & I started to put on some. And I think I saw him every week for a few years. I'm lucky I like my doctor!

It's been 15 years since it all started & 11 since IBS diagnosis so it's taken a while but wish I'd known of fodmaps sooner. That said until it was at a level point, I don't think I could have done it.

failinis · 28-07-2016 12:56pm

witchgirl26 wrote: »

I feel you on the nightmare for doctors & the weight. I was so underweight at one point that I was told by my doctor if I didn't improve, he'd have to send me to a feeding clinic for eating disorders (even though we all knew I didn't have one) just to help get my weight back up. Luckily that didn't have to happen & I started to put on some. And I think I saw him every week for a few years. I'm lucky I like my doctor!

Oh dear!
My family was doing "interventions" about my "anorexia" and being guilted because my stomach could not handle food, forcing me to try and over eat, and then vomit because it can't cope. :pac:
I still remember one of my brothers taking me out in the car for "a talk" and just making me extremely depressed - no one believed that I was in any pain.
Went to A&E and the dr never even felt my stomach and said "its just women issues" and left me crying, my fupping stomach is not down where my womb and all that craic is! 5 weeks later I was told if they never done the endoscopy it would have led to a bleeding ulcer and very serious.

My GP sort of agreed I was not anorexic but threatened if I could not pick up weight she would have to admit me. I now see a dietician.
Since my stomach has healed, my weight has stabilised, but not actually gained? Stable better than losing. :rolleyes:

I wonder how common that is for people with digestive issues. Horrible!

Touch wood, I am not lactose intolerant, I feel I lean more to gluten intolerance and have cut a lot of it out of my diet.
I have my fingers crossed that you can get back and used to some level of lovely lactose :P

witchgirl26 · 28-07-2016 2:40pm

Lol I had similar but thankfully not from family. My stomach would always be worse in the morning which did lead to my mam asking if, at 16, I was pregnant. My response was that if I was she should call the Vatican as they had another immaculate conception on their hands! She didn't ask again.

I did face it in school though when I wasn't eating much (because it was making me feel ill) that a lot of people thought I was anorexic. Then when I did start eating when it was getting better, they decided I was bulimic. :rolleyes:

livedadream · 29-07-2016 2:19pm

welcome! im not super active here as i have crohns, same thing really to be honest, it all comes down to pooping or not pooping.

sullivlo · 30-07-2016 12:32am

I'm at the beginning of a flare up I think. None of the usual go-to methods are working. My GI said that if it happened to go to A&E and ask to speak to his on call team. But I don't fancy hospital. I've gone so long without needing to go!

El_Dangeroso · 30-07-2016 10:54am

sullivlo wrote: »

I'm at the beginning of a flare up I think. None of the usual go-to methods are working. My GI said that if it happened to go to A&E and ask to speak to his on call team. But I don't fancy hospital. I've gone so long without needing to go!

I think no one loves hospital but if that's what the doctor advised I'd do it..

Have you ever tried magnesium citrate powder? Specifically the Natural calm brand. It has the dual action of drawing water into the bowel and also promoting motility, AND it calms down muscle spasms. I've seen it work on people where movicol did nothing.

Edit: Whoops just realised I misinterpreted the phrase 'needing to go' with 'needing to go to hospital' Sorry ignore the above!

sullivlo · 30-07-2016 1:22pm

El_Dangeroso wrote: »

I think no one loves hospital but if that's what the doctor advised I'd do it..

Have you ever tried magnesium citrate powder? Specifically the Natural calm brand. It has the dual action of drawing water into the bowel and also promoting motility, AND it calms down muscle spasms. I've seen it work on people where movicol did nothing.

Edit: Whoops just realised I misinterpreted the phrase 'needing to go' with 'needing to go to hospital' Sorry ignore the above!

Oh it was not wanting to go to the hospital! Must check out magnesium citrate!

El_Dangeroso · 30-07-2016 2:47pm

sullivlo wrote: »

Oh it was not wanting to go to the hospital! Must check out magnesium citrate!

Only if you're IBS-C, doesn't help much with D!

19-08-2016 3:49pm

Oh lordy another week of cramps, bloating, and an inability to eat anything. I've been like this since Monday and as is often the case with a flair up I have zero idea why. I haven't eaten anything out of the ordinary. The only thing different has been organic pears but surely they can't be the cause. I have a cramp right across the middle of my stomach and a mild ache in my lower belly. Also my bowels are out of character

Yikes.

Colpermin isn't working. Even drinking water makes me feel uncomfortable. So I have nexium. I just hope that works.

What do you guys do when you find yourself in a heap or do you have it fairly under control?

IBS

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