IBS advice

Don't want to teach you to suck eggs but have you thought about stress triggering it? As I'm sure you know IBS and almost all bowel conditions are massively affected by stress, and I don't mean 'oh my god the world is ending' stress but small stuff you may not have thought about. Even thinking to yourself 'I hope I don't need the loo while I'm out walking' is enough to trigger the stress level required to make it worse. It's a vicious horrible horrible circle! I found most GP's to be yeah pretty rubbish with it and you just get fobbed off a lot and told there's not much you can do and find out the triggers and remove them. It took me a lot of appointments telling them it really wasn't right until they finally said 'ok we'll send you off for tests'. I struggled with IBS from being a teenager right through until about 3 years ago now when I have finally been diagnosed with IBD so I can totally appreciate the struggle and the 'oh my god I'm so sick of this' feeling and sentiment.

Nope, been suffering with it for 28 years. Mine is 99% mentally triggered and 1% food triggered (bell peppers are worst culprit) It really affects me mentally, as Golfchick mentions, I worry about it coming on then that worry brings it on, it’s a horrible vicious circle that causes me great anxiety and panic attacks, it has controlled and pretty much ruined my life.

Sorry I can’t give any positives

Stress can give me a flare up and I end up with dreadful wind and gripping pain in my gut.

I have been okay for a number of years, but back in the summer we went through to Glasgow to do some shopping and I was hit by the full Covid experience. The next few days were pretty bad.

I changed job 6 years ago and that helped me. I also take extra soluble fibre each day. For the last few years I have been taking inulin powder. This keeps me regular and mostly keeps the IBS under control.

Good luck finding something to get it under control. It is a horrible illness to suffer from.

Look into a low Fodmap diet, the dr sue shepherd books are good. Do it properly, take your time, it took over four weeks for me to feel a difference from the elimination phase, although stress still gives me the cramps and tiredness. I didn't have all the other symptoms, good luck.

Also I thought it was peppers and tomatoes. Had nothing to do with them for me, it was the onion and garlic you have with them. Again I'd really recommend following the FODMAP elimination diet then the gradual reintroduction to workit out.

We’re still trying to figure out what causes it for my daughter, but our doctor said it could be a sort of matrix effect that triggers it. So, it’s like you need to tick 4 boxes to trigger it, and there are 10 triggers that can tick the boxes - which makes it harder to identify the triggers because it’s not like you’ll notice that every time you eat onions you get pains, or whatever. And then since stress and hormones can be triggers, a food diary doesn’t capture the whole picture. Hope that’s helpful/makes sense.

Our chief food suspects so far are tannins, caffeine, meat substitutes, and white carbs.

Good luck!

Overdose on bran, banana, and sultanas for the next 2 weeks. Eat a couple of bowls a day to compensate.

Dunno if I have IBS particularly, but I know I've got a shit diet with not enough fibre which causes issues, so that squares me up anyhow.

My GP seemed happy when I rang to say I was sorted. Recommendations all came from a friend though, GP didn't know much about it. To be fair she mostly concentrated on ruling out serious stuff.

Bran, ripe bananas and sultanas all have fodmaps in. I am not a doctor etc.

Yup, I too am a member of this crap club. I never had an issue but the lymphoma treatment I received in 2017 appears to have been the catalyst. Typically there are different triggers usually food or stress related although some are seemingly random. After following the FODMAP diet that helped to a degree but never highlighted anything I am now particularly susceptible to other than the usual garlic and onions. I've been able to verify this by keeping a comprehensive food diary for the past 2 years. Stress is certainly a trigger and the gut is sometimes called the second brain. An example is I've been under consultation for the last 6 months but found out last week that I'm still employed. That period has been pretty tough TBH.

I tend to have a good couple of weeks then a less good couple of weeks followed by a good couple of weeks followed by a crap couple of weeks. For the crap weeks find buscopan and mebeverine help although when properly uncomfortable add ibuprofen into the mix.

I find exercise helps a great deal which can be hard especially if bloated or uncomfortable, but for me, helps a lot.

Anyone tried those soil bacteria supplements?

woots787
Free Member
Bran, ripe bananas and sultanas all have fodmaps in. I am not a doctor etc.

no idea what fodmaps are works for me though.

Suffered for 20 years. Mine is a combination of stress triggering and certain foods.

Now most sufferers fall in to the same common food types, onions / garlic, spicy food, lactose, not enough fibre. Mine are whole grains, although I've been slowly reintroducing oats and it hasn't had a drastic effect, citrus fruits, especially orange juice, cucumber, and night shifts.

I've been taking Mebeverine for 15 years and that has help massively. TMI: before the meds I was having episodes where I was having explosive diarrhoea that was just mucus. My gut was so over active it was if I had a pet cow living inside me.

The problem with bad weeks is that the nature of IBS means once it's started your natural worry will mean it just goes on and on and on and on! Not sure if there's talk out there of hypnotherapy working, not sure I believe it personally, but I think if I had IBS with no resolution I'd be trying anything. I think it depends on your natural disposition about whether you can knock yourself out of it or not. I found when I was younger that no matter the diet changes it would never be a reliable fix but it's because I naturally worry and stress that it's going to happen and therefore it does happen.

https://www.monashfodmap.com/ibs-central/what-is-ibs/

I found this site useful. I'll leave it here though, sort of obvious from above replies that your gut is complex and the issues can be varied so maybe I'm not being helpful saying what worked for me when you may have a totally different issue. Again good luck and I hope you f i nd the issue. Being methodical worked for me, although I do miss proper bread.

Never ever been helped properly by GPs. Just take this and go away, basically. Ok they try and rule out the really serious stuff but that's all.

Ask to get Mebeverine as a repeat prescription and take it as prescribed. No real side effects. Can help of you know there is a stressful event then take some half an hour before can help.

For me cutting dairy, not just lactose, helps. Fodmap as above is worth researching.

Michael Mosley Gut diet books are good...... https://cleverguts.com/

There's also some clinical trial research which you can volunteer for without going through your GP.... http://www.contactme-ibs.co.uk/

More specifically for IBS-D https://enteromed.co.uk/

I had a blood test and a breath test. Diagnosed with various food intolerances and mild SIBO-C. After a Low Fodmap diet for 6 weeks, ABP Oregano has worked best for me and Magnesium Citrate for constipation. I can now live with the symptoms all except the wind. I take Wind eze for that.

I just wanted to add a message giving some support.

I have suffered with IBS for a long time and it can be pretty debilitating and downright frustrating to live with and for others to live you living with it. It took me a long time to understand it for myself and be able to explain it to those I loved around me who were frustrated with what it prevented me from doing.

In beginning to understand it more, I have found I can start to manage better with it. Mine is mainly stress driven, but the stress that largely drives it is that which it has locked into me. Being generous with yourself and being accepting that it is a bit crap can help to reduce the symptoms in me.

I hope it eases up for you,

Mike

You could have one of these.

https://camnutri.com/index.php?osCsid=92fqheujcsjsttm11jikckjta0

Not sure if you can order directly I had mine done via the below after a session.

http://www.hopevalleynutrition.co.uk/

Retirement took a lot of mine away but still suffer after to much beer or the wrong type of food.
I mainly just got bloating and wind though so not as bad as some people.

My symptoms are a mixture of cramps, bloating, discomfort, diarrhoea, constipation, frequency, lethargy, low mood (but crucially no weight loss.) It’s grinding me down now, I mean I’m not disabled by it nor am in pain (just discomfort) so in that respect it’s manageable. But I’m fxcking fed up of it for sure.

I know a few of my triggers like onions/garlic, too much booze obviously, too spicy, too much crap like biscuits etc. But I’m struggling to nail it down specifically and I’ll suddenly have a bad day seemingly out of the blue. I’m still experimenting with lactose free, there’s some improvement but I still get bad days.

Sounds pretty much like what I get and after a long time trying to figure out what was causing it via restrictive diets and even cameras both ways it came down to two things: eating too much crap and stress. Both are linked though. If I'm happy and relaxed generally I can eat a decent amount of snacks without any major effects whereas if I'm stressed a small amount of snacks sets me off. Stress is the main trigger though as it can get my guts rumbling all by itself but when I'm stressed I tend to pig out a bit so it's a vicious circle. It took a long tome to figure it out as I was badly stressed throughout the whole 2 years of investigations for various reasons but didn't realise/admit to being so. Another key thing for me is to not get dehydrated as that leads to me getting all constipated which leads to stress, that leads to some explosive results when the cork lets go!

The trick for me is to not fixate on it when it happens otherwise you end up in the vicious circle of:

The problem with bad weeks is that the nature of IBS means once it’s started your natural worry will mean it just goes on and on and on and on!

As you're finding out GP's aren't really clued up on how much of an issue it can be. I only started to get a handle on mine once I'd had a nervous breakdown due to stress and went on the courses they offer for that. IBS was a symptom for me of larger issues rather than one thing in isolation. It's a tough one to deal with and I hope you get to the bottom (ahem...) of things but it can be a difficult journey, good luck!

I developed bad IBS after picking up gut rot in Tunisia. I saw specialists and took mebeverine and/or loperamide in bad flare ups. Latterly tried peppermint oil which seemed to be a good option long-term. A bout would leave me completely drained, rUined my Football because I’d not have the energy to maintain longer than 10mins on the pitch. I got quite depressed with it. I finally got a camera up my hoop which ruled out owt serious. I then demanded an appt with a clinical dietician. They were great, gave me a beige food diet to then add stuff back in. Hard not eating veg but it improved my innards no end. Finally, I’ve not had a serious attack since picking up a stomach flu in Spain last year. Like two bookends.

Thanks for all the responses so far. Some useful info but it's nice to hear other experiences and coping strategies!

The general gist seems to be that there's no point pursuing it through the GP though.

I briefly had a colleague who went for regular appointments with a dietician regarding her symptoms. I didn't really get chance to talk to her in detail, so I don't really know what was different, if anything, about her situation.

Anyone tried those soil bacteria supplements?

This is interesting. There's the school of thought that a lot of issues all stem from the health of your gut flora. The problem being that a lot of the things that promote a healthy gut (onions for example) trigger the frigging symptoms!

I've tried actimels, keffir and eat natural yoghurt with no noticeable difference.

Last year I had a bad campylobacter infection (re-heated meatballs 😒) Ended up having to take two courses of antibiotics to clear it. I actually work in the path lab, so had the pleasure of taking my own sample in to be cultured by one of my work mates 👌

She said I had no normal flora at the time, just camp. This is not entirely unusual, but we do usually see other bugs along with the camp.

Once I'd cleared the camp I did feel pretty good for a couple of weeks, maybe I was just relieved! In my head it felt like my gut had been cleared out and had the chance to start anew, But something set me off one day and I ground back down to the usual crap. Literally.

Low fodmap diet
IBS specific pro biotic
Kimchee / suarkraut / natural yoghurt
Water

Digestive enzymes with meals
Activated charcoal if/when flare ups

I started with IBS in university, for me it was horrific constipation (2 weeks!!!!) and stomach cramps so bad all I could physically do was curl up in a ball on the sofa.
For me it was general bad diet and stress/worry.
I used to take tablets which were basically peppermint oil which lasted all day but you can’t buy them now which is a real shame as they were ace.
I just improved my diet (fibre was the big one I was missing) and slowly over time it got better.
Nowadays I never get it - lasted about 15 years though. I suppose my diet got better as I got into my late twenties. I stopped taking any pills as I found that having a mug of peppermint tea after a bigger than normal meal sorted me out.
So on a positive note I no longer say I get IBS which I don’t, however the long periods of constipation resulting in sitting on the toilet “trying” to go have left me with another problem. 🙁🙁🙁

My other half has this. Seems to be ok now however after becoming aware of high fodmap foods, in particular apples. Also Soy doesn't do her any good. She had the symptoms you have and from what you describe its seems to be similar symptoms to a soy allergy. Im no doctor im just making comparisons with our experiences.

Plenty of diet related success stories here:

https://meatrx.com/category/success-stories/

Some good advice on here which I need to look into in more detail. I've found that lentils are one of the triggers for me.

The stress thing about getting caught short is a big one for me and before a ride (also getting on a plane) there will be two visits at home followed by another one when I arrive by car at our start point. And of course making sure I carry some toilet paper in case I need a 'wildy' out on the ride.

Possibly a daft question but is it 100% definitely IBS and not IBS - as in is it definitely irritable bowel syndrome and not inflammatory bowel syndrome (eg something like colitis for example).

Given your symptoms, particularly the lethargy, diarrhoea and frequency it is perhaps worth ruling out and if it is say colitis then you need very different treatments to plain old IBS. Trouble is there is only one way to find out and that requires a special type of camera... Not that is a reason not to get a proper diagnosis if you haven't already.

I don't want to be overly picky and I understand it may come across this way but as a diagnosed sufferer I have to correct you and say you mean inflammatory bowel disease. Syndrome implies it is something we can merely get rid of and something we have because we're somehow choosing to. IBD is an immune condition, our bodies think we have something wrong and attack them, it's not diet related and not something we can control. It is something we can never be rid of and never recover from, hence it being a disease. I'm sure you knew that but reading syndrome really grated. Yes you're right though it is a very special VILE camera to find out for definite and it took a lot of persisting with my GP to finally have it done (after refusing at about 13 because of the medication available at the time which would have caused massive side affects later in life).

I don't think I'm IBD. When I say lethargy, it's not permanent, it's just when I'm having symptoms, so I might feel wiped out for an evening or an afternoon then all settled down again the next day.

I have had various blood tests over the past couple of years, all proving negative, although that could obviously change.

I'm going to have to really clampo down on what I eat, see if I can settle things properly then see how certain things affect me.

I plan on reporting in with the GP every couple of months and maybe I'll check enough boxes eventually to get the relevant checks to rule anything more serious out.

In the mean time I'm giving buscopan another go, see what that does.

I had it for years - so I empathise completely.
Oddly, I gained weight during the time ( and a lot) mainly because I stress eat (and drink).

I had no specific triggers - red wine/ lager beer/ spicy food didn't help. But i haven't really factored in eating and drinking too much and a lack of exercise.

Absolutely nothing helped - and it is very debilitating. My was down to stress - work and other stuff.
In my case, I removed the stress trigger ( which was really odd- as it was a really motivator / driver) - and the IBS more or less disappeared overnight. Unfortunately the weight didn't - which lead to a viral melt down and diabetes.
But at 40kg weight loss, cycling 3 x a week, walking the dog twice a day etc has addressed most of those issues ( inc the diabetes).
If only i could get my sense of balance back, it would be great.

Hence, my advice to you - I doubt your IBS has anything to do with gluten, wheat, spicy food, or eating too many pot noodles. It will be stress.
But what are you stressed about - and how can you manage that stress - and can you address / compartmentalise it?

GPs are not really that sympathetic about it - and I got the impression they see its as a mental health issue ... that done see that the IBS is "the problem", it's something else.

@GolfChick - Yes I quite agree, I was just making sure the OP had ruled out the more sinister IBD which oftentimes gets referred to as IBS also. I have suffered from chronic ulcerative colitis to the point I have had to have a full colo-proctectomy so know just what full IBD entails :).

Had much the same from a GP many years ago when I told them I was suffering from chronic fatigue and not had a normal bowel movement in months. They said "what's normal?" I later ended up finding out I'm celiac. Cutting out certain foods made a massive difference and just have to be careful with what I eat now. The annoying thing is, a lot of people think it's just a fad, or a fashion thing. It's not. I still get bad fatigue at times if I eat the wrong foods which hits me like a brick wall for a day or two.

Try a process of elimination with foods. I ended up just eating fresh meats, rice, eggs, and veg for a few weeks before adding new things every few days until I found what I can and cant eat. But dont underestimate the little things like sauces, mustard, processed food, drinks, etc.

Thought I'd post an update on my thread....

Since my original post I tried with my GP again and this time I got a good one, she referred me straight on to the gastro clinic at the hospital. Unsurprisingly this resulted in the old camera going up! This experience is obviously deserving of its own thread!!

Anyway, I was discharged from that experience with the all clear and told "you've got IBS." So good news... but in the initial consultation, the Dr had said if there's no underlying issues, we'll have a look at a plan to determine how to manage my symptoms. However, I've heard nothing since, so I've chased that up this week, waiting on a call back.

My symptoms at the moment are grim, I can best describe it as feeling nervous all the time and pretty much as soon as I eat anything, I need to go. Been like this a couple of weeks now.

I've started on some probiotics about a week or so ago, but I'm not sure if they are actually making it worse.

So my questions to fellow sufferers are :

Have or did you have any follow up after an endoscopy (if you've had one?)

And what are people's experiences with probiotics, positive/negative, initially rough but you get over it etc?

From what I can tell once they’ve ruled out you don’t have something that’s going to kill you then you’re on you’re own your own. The NHS is hopeless but only in that doctors seem unwilling to tell you bluntly that they’re not going to help and that you need to sort your diet by yourself. Paid options are little better but all they’re really doing is to coax you into sorting what you put in your mouth and maybe sell you some stuff to make you feel like you’re making an effort.

FWIW, I’ve struggled with this for years but the only thing that has worked has been the low FODMAP diet and then keep the bad things very low. For me that’s lactose and refined crap.

This diet is hard and it’s hard on the people you share meals with but it really is worth taking a couple of months of pain if you get your life back.

Trust me, if you’d be proud to pop out a well formed poo then maybe it’d be worth a change of diet.

Had similar to the OP where the GP was dismissive at first saying everything was fine. They suggested taking meds to stop diarrhea 45mins before it happens. Unfortunately time machines are still not available for this method to work.

Turned out I'm Celiac. Night and day difference now after changing my diet but still get spontaneous issues at times.

https://meatrx.com/

https://meatrx.com/category/success-stories/

https://meatrx.com/research-and-books/

I know a few of my triggers like onions/garlic, too much booze obviously, too spicy, too much crap like biscuits etc. But I’m struggling to nail it down specifically and I’ll suddenly have a bad day seemingly out of the blue. I’m still experimenting with lactose free, there’s some improvement but I still get bad days.

I have had various blood tests over the past couple of years, all proving negative, although that could obviously change.

I'm assuming you've had a blood test for coeliac? Its not 100% reliable though (sensitivity is usually quoted at 80-85%, ie. 1:5 - 1:7 people with the condition are missed). Mrs Poly was "diagnosed" as IBS for about 15 years before a doctor dealing with a totally different thing suddenly said, "hold on". Cut the gluten out completely and she's "cured" of the IBS symptoms.

Cut the gluten out completely and she’s “cured” of the IBS symptoms

I did have a blood test few years ago and it was negative. Does the endoscopy see the damage done from being coeliac?

I'm going to try a gluten free diet for a few weeks for sure.

Right now, my symptoms are triggered pretty much as soon as I eat (anything.) I feel like I need an anti-spasmodic or something.

No call back from consultant yet, I'm going to chase up next week.

I've had IBS since the yearly 90s , mostly triggered by street.
I also have Diverticulitis (lucky me) which is another level of shit to deal with.
My Dr suggested I tried the Low-FODMAP diet along with Buscopan and Peppermint oil capsules, this combination has really helped with the pain and bloating.

Have they actually ruled out full IBD (colitis etc)? Some people have flair ups of that as well so things like the fatigue are not necessarily constant.

If you have say colitis and it isn't too aggressive then there are some very good medications for it that can bring it under control.

You would think that they would be able to check for active inflammation if it was IBD.

I have IBD. Chrons. But it's very well managed now so that I'm basically symptomless.
I know there are worse people off than me but at least with IBD there are treatments.

I know how bad it can feel to have IBD/IBS. Stress makes a big difference. I think milk did a bit for me too.

Lots of research going into gut biomes.

https://www.theguardian.com/society/2021/jul/11/unlocking-the-gut-microbiome-and-its-massive-significance-to-our-health

hopefully there will be a break through one day.

Another suffered here. That tells you something. You think it’s just you that feels like this, but there are a lot of us about. For me it means that I have an encyclopaedic knowledge of public loos in central London. All my work and leisure activities have to be planned around this map, and during lockdowns it’s been murder 🙁

I went for hypnotherapy which worked to some extent, but wasn’t a magic bullet. Since then I’ve been taking amitryptiline daily which seems to have helped, but I can’t say it’s cured.

A friend has been following a low fodmap diet and it’s been an absolute nightmare for him and his family and in the end done no good at all.

I found mebeverine helps get it under control, but the OP has far worse symptoms than me. With that level of issue, surely it's worth accepting a few months trying different exclusion diets to see if anything makes any difference, as hard / dull / expensive as that might be. Mebeverine, no caffeine, no alcohol and then try full gluten free for a month, then full lactose free. Low Fodmap won't work for everyone and you should be able to reintroduce slowly / small quantities in time.

At least it's good news there is no obvious damage. Good luck.

Another sufferer here. Mine is slightly different as this was brought on due to the chemotherapy I received for the lymphoma diagnosis which was resulted in enteric neuropathy. I've tried LOFODMAP which helped to an extent, I've kept a comprehensive food diary of the last 3 years which has resulted in no particular triggers other than the usual alliums which I avoid. For me, I think the main trigger is stress as I usually suffer very little when on holiday so am doing my best to manage that.

I find mebeverine helps when I take a tablet before then evenimg meal then when things are tough use either/and buscopan/colpermin supplemented with ibuprofen when necessary. Also for those that find peppermint tea helps I highly highly recommend the Tesco finest peppermint tea pig things, they are by far the strongest peppermint tea I've found.

I feel your pain as I went through this for years. Onions and garlic make me bad but I found bread or more specifically what they put in bread to make it last so long is what sets me off. Buying a bread machine and making my own bread changed my life.

One things that really helps with my IBS is eating less (but more often). Even foods that in themselves don't cause me issues can cause a lot of discomfort if I eat until I feel full.

My IBS has pretty much dominated my life for about 15 years now. Perhaps more. Food seems to bring on the attacks, but any attacks invariably occur after a stressful period. So if I have a really busy and stressful week in work, a few days after the stress seems to have subsided, my IBS kicks off. So it is clearly stress related, not primarily food related for me.

I’ve been on Citalopram for years now. The lowest dose. It’s an anti depressant, but I am using it to lower anxiety. That seems to help stave off the core cause of the IBS. I also take pantalrazole every day. Both are prescription only. Even with these, the last year or so has been a bad IBS year (hardly surprising based on the increased stress levels).

My latest discovery is Buscopan - for me it’s a total wonder-drug. It’s anti-spasmodic. I am finding it a God-send. When I feel the IBS kicking off, the Buscopan is really fast acting and seems to prevent full on explosions and the worst of the cramping.

Results of the clinical trial I mentioned on page 1 have now been published. I highly recommend anyone suffering to give Enterosgel a go. It is used widely in Europe.

http://dx.doi.org/10.1136/gutjnl-2022-327293

Hopefully this will become one of the recognised treatments in time.