IBS - anyone with similar experience? - IBS Network

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IBS - anyone with similar experience?

Konfused profile image
25 Replies

Hello,

I’ve suffered with my symptoms for about 15 years, but seem to have noticed them more in the last 3-4 years. I went to the GP recently. He did blood test and stool tests and they didn’t seem to indicate anything too worrying and he said it was probably IBS. He recommended trying fodmap diet and prescribed mebeverine hydrochloride. I’m not very satisfied with my experience with the GP. I tried fodmap for a month or two but it was largely inconclusive and I’m not going to take the medication - I’d rather figure out and treat the cause.

I wondered if anyone has the same or similar symptoms as me - I have very loose and quite urgent bowel movements each morning usually 1-3 times. It’s not quite diarrhoea but is quite loose (and usually smells kind of sulphurous?!) I usually don’t need to go after the morning. I get a really noisy, gassy stomach after lunch (embarrassing at work in a quiet office!) and then usually after dinner. I have to pass wind quite a lot. I feel nauseous quite often and bloated after eating. I’ve always been skinny and I wonder if I’m malnourished, as I feel lethargic and washed-out quite often. I also suffer from anxiety and depression, but it’s manageable and I’m not on meds for this.

I’d just be interested to hear from anyone who has similar/same symptoms and then try to figure out what the specific cause may be. I’m sick of it and worry that the inflammation may be doing me long term harm. I’d like to have a “normal” bowel movement and not suffer with gas and bloating most of the day!

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Konfused profile image
Konfused
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25 Replies

Anxiety and stress does that to me. Try a product called Rescue remedy and stick with bland foods. Shy clear of coffee and alcohol or fizzy drinks. Then you might try a quality probiotic with breakfast. Anxiety and stress can upset the balance to the stomach flora, so trying to reestablish it would be the best course of action. Back to basics with your diet. If necessary fodmap, gluten free and lactose free, then start to rebuild reintroducing one food at a time.

Cheers

Frasina profile image
Frasina

This was me for 20 or so years. IBS does this and most problematic is the way it presents on one person will not mirror the next. Do take mebeverine as it will settle the cramping and pain. You can take Buscopan IBS instead for a week or two (not both) and see if that works. Your GP will only refer you for tests if you display more symptoms (quick weight loss or visible blood in stool) . I had quick weight loss 2 years ago (a stone in a month) and GP still refused to refer me! So I took myself off to see someone and paid and the gastroenterologist said I need an urgent colonoscopy because of the weight loss; resulted in my finding out I had patchy pancolitis controlled now with meds. Do monitor foods - you can have issues with certain foods for sure. White diet (short term) will help - nothing with high fibre and more plain foods for now as the body still needs fuel! Good luck!

Konfused profile image
Konfused in reply to Frasina

Thanks for your reply and your interesting thoughts.

I do have quite a fairly high fibre (healthy!) diet. Maybe that’s a big factor.

I’m prone to health anxiety - I tend to worry a lot about long term health/nasty diseases, so I eat a good diet with plenty of vegetables etc and foods that might stave off health problems. Also I don’t eat meat.

So basically I worry that if I eat a very plain diet, it might help my everyday IBS symptoms but might contribute to some horrible disease as I get older! I’m mid-40s now

Or is that foolish because IBS/inflammation might cause diseases too?!!

Frasina profile image
Frasina in reply to Konfused

My gastroenterologist has said that the research is not conclusive that any one food contributes to someone getting IBD. Basically what is fine for one person may not be for the other. eating healthily is of course good, but if you are in a flare then calming your bowel with more plain foods makes sense. It must not be long term; maybe 1-2 weeks to see if it helps at all.

Health anxiety is a huge issue for anyone with gut problems as it will exasperate it! The brain-gut relation is well known in terms of stress and anxiety causing symptoms to be more profound. It becomes a vicious circle, so you should try to find ways to de-stress. Your GP may not refer you to see gastroenterology as currently your symptoms may not warrant it even though you are feeling rough. If as I mentioned in my original reply, you want piece of mind and you can afford it, pay for a one off appointment with a gastroenterologist and they will at least put your mind at rest.

Konfused profile image
Konfused

Thanks for your reply, that’s interesting. The thing is, it seems to have been really constant and steady over a long time. I’ve become a dad, moved house, work stress etc, but I can’t see any major issues that have precipitated it all. Symptoms seemed to start about 15 years ago and I did actually make changes to have a slightly calmer life, but the symptoms didn’t really change.

Also, I don’t seem to have ‘flare ups’ it’s just usually the same all the time! It’s something I can live with, but it’s not great! I guess I get bad days and better day.

xjrs profile image
xjrs

IBS is often due to a gut bacterial imbalance (good bugs not keeping bad bugs under control in the gut), which can be caused by a number of things such as food poisoning, stress, poor diet (not feeding the microbiome properly) and a genetic predisposition to IBS i.e. someone else, without this predisposition, who gets a tummy bug may not necessarily go on to develop IBS. You could try a good, probiotic on a 3 month trial to see if it helps. Alflorex worked best for me and has been scientifically studied for IBS.

Konfused profile image
Konfused in reply to xjrs

Many thanks for this advice, I have looked into gut health in the past year and have recently started having kefir daily and also was going to try kombucha. I actually didn’t realise you could get probiotics as tablets, so I’ll look into taking Alflorex.. will it be ok to take this alongside fermented foods?

xjrs profile image
xjrs in reply to Konfused

It might be best to park the fermented foods whilst you take Alflorex (at least initially for the 3 month trial period), to properly test the strong Bifdobacterium strain that is in it. It is a single strain probiotic. Precision Biotics the manufacturer says that sometimes probiotics can compete with one another and when Alflorex was clinically tested for IBS sufferers, it was tested on its own, so they can only recommend it on its own. The strain that is in it is passed from mother to baby during a natural birth to prime the guts defences. The Bifdobacterium in Alflorex, naturally declines in the gut as you age.

Konfused profile image
Konfused in reply to xjrs

So interesting about the bacteria strain passed from mothers to babies and that it declines with age. Many thanks

RacingGirl3 profile image
RacingGirl3

I'm sick of having to live with IBS, no matter how calm I try to be it still rears its ugly head .

Superzob profile image
Superzob

You know, the more I read on this site, the more I realise how similar people’s experiences are. Your’s is almost an exact image of mine: underweight, predominant IBS-D (with more urgency than proper diarrhoea), lot of wind, lethargic and depressed - we could be twins! I don’t get the bloating, and mebeverine should help with that, but I never had any luck with the urgency.

I was advised not to use the FODMAP diet because I was underweight (I had previously been advised to go on a yeast-free, sugar-free, diary-free diet, and simply lost weight with no improvement after 3 months); like me, you might be in the “super-slim” 2% of the population, which is not an underlying health issue, and is probably simply genetic. I did find, in my early days of IBS, that restricting fibre eased the symptoms, but I’m beginning to think that might have been a mistake in the long term. The reason I say this is that I’ve had my microbiome tested as part of the Zoe Health Programme, and it seems to have suffered from years of fibre neglect. That’s not to say I would advise increasing fibre immediately, only that a gradual increase might be beneficial in the long term to increase microbiome diversity (a possible reason for food intolerance).

Unfortunately, even though Precision Biotics has brought back the original Alflorex (which I felt helped me a great deal), I’m not getting much improvement after 6 weeks, and seem to be reacting to any inadvertent fibre increase in the Zoe programme (it’s very easy to get carried away with a “healthy” diet - I need to pace myself better!). Also, even Zoe recognises that a programme which concentrates on increasing fibre and microbiome diversity won’t necessarily work with a dysfunction like IBS, because it relies on a “normal” gut response.

I’ve just bought my first Kefir yoghurt (couldn’t find any kombucha tea), but I’m having second thoughts with xjrs comments (I’ll give it to my wife - she can eat anything so long as it’s vegetarian)! It seems the jury’s out on the best way to improve the microbiome: the Precision Biotics single probiotic approach (which clearly works for some), or the Zoe diversity approach, which has also been backed up by research. The problem is, despite some similarities in symptoms, there could be a myriad of different underlying causes of IBS between individuals, and finding your personal solution can be very difficult.

But I hope some of the comments you’ve received go some way to finding a solution.

Konfused profile image
Konfused in reply to Superzob

Thanks, that’s really interesting to hear how similar your experience is!

Loads to think about.

I’ve been reading all about the Zoe study and would really love to give it a try. I’m put off by the cost (we’re feeling the cost of living squeeze at the moment!) but thinking I might try it later in the year. Can I ask - do you feel it was worth it generally? And also, how many months subscription to the app do you think is needed after you’ve done all the tests?

Did you have a low-fibre diet previously? I think I’ve always eaten fairly high-fibre, but am really confused about what I should actually be eating - more or less of the stuff..?

I do think I’ll give alflorex a try at some point soon. Fingers crossed I feel some benefit!

Superzob profile image
Superzob in reply to Konfused

Please see my reply to xjrs

xjrs profile image
xjrs in reply to Superzob

 Superzob , sorry to hear that you've not been getting on with different approaches. The problem with IBS is that it is probably a catch all for a number of different syndromes that are still under investigation scientifically. This means that different approaches may have different outcomes in different people. As always, it is trial and error. In terms of my microbiome suggestion, statistically this is a strong pointer to one of the main causes of IBS in all the research that I have read. Since I had such success with Alflorex and I wish I'd tried this approach first before any dietary modifications, I thought I'd pass this information on to others, to save them making some of the mistakes that I made. Starting from scratch with IBS, this approach is one worth trialling, due to the more prevalent nature of microbiome issues, particularly gut bacterial imbalances or dominant bad bugs (e.g. from earlier food poisoning) with IBS. However, everyone's gut makeup will be different - what one person lacks, may be different for another. Some people's IBS may not be due to a gut bacterial imbalance. It is also all caught up with psychological factors. All a person can do is try a number of different approaches, even a number of different probiotics and/or psychological tools like meditation or gut directed hypnotherapy.

Let's hope that research advances enough so that one day, there is a clear test for each person's cause of IBS and there is a specific treatment for that particular cause or number of causes.

Superzob profile image
Superzob in reply to xjrs

No worries. I was going to reply to  Konfused that Alflorex would be a better (and cheaper!) starting point than Zoe which, by its own admission, is still “work in progress”, particularly with IBS. You can tell from the approach that it is aimed at people who have a poor diet and are likely to have underlying health conditions (diabetes, obesity, constipation) because of it; IBS doesn’t fall into that category.

The advantage of Zoe for me is that it has highlighted my very poor microbiome, from years of avoiding the fibre IBS “trigger”; they have suggested a more cautious approach (the Zoe app tends to rush into dietary improvement, which my gut can’t cope with), starting with soluble fibrous fruit/veg, rather than those with insoluble fibre (though some have both, which is a bit of a challenge).

The other positive issue is that their advisers are the most responsive and helpful I have ever come across in any organisation; one is contacting me every week to see how I’m getting on (badly in my case, but at least they’re trying). The downside is the very specific food scores with few generic options, particular for home cooked meals (for instance, a Waitrose product is scored separately from the Tesco version of the same thing, yet the scores may only be different by one - hardly significant). I’ve been told not to take too much notice of this because you can get very disappointing meal scores for my wife’s cooking because the system doesn’t recognise it, or assumes ingredients which aren’t there.

Sadly, I’ve noticed no difference after 2 months of Zoe (though the app seems to expect some improvement), or from changing from chewable Alflorex to the original version (which worked in the past). However, a recent video from Zoe suggested that the microbiome of people who have been on a course of antibiotics can take up to 6 months to recover. So I might be a bit optimistic that I can get a quick fix from any approach for a gut microbiome which has been 40 years in the making!

Thanks for the advice, as always, and keep up the good work.

xjrs profile image
xjrs in reply to Superzob

Thank you Superzob . I got the impression that Zoe was more for the general population than us IBS sufferers. Yes, the microbiome can take some time to rebuild.

I've just asked my Aflorex subscription to be changed from the 'with calcium' to the original version since I have IBS-C and I understand that calcium carbonate can be constipating. It was quite frustrating for me when they changed the formula. I'd mentioned it to them, but I got fobbed off. I think it might have been you who let everyone know that the original was back. If so, thanks for that :-).

Mumof31983 profile image
Mumof31983

I have a similar story to yours, which I controlled with not eating out and restricting my diet and not eating wheat at consultants advices, fast forward 15 plus years and I began to have excruciating pain and hours of multiple small bowel movements a day ( constipation) and multiple loose movements. I tried yoga and meditation , which had an effect but did help when things were bad . I got a private sensitivity test which picked up E460 and I researched that methyl cellulose, a laxative was in gluten free bread. I am now on a very restrictive diet and waiting on a dietician to support low fodmap. I maintain the gluten free diet and avoid methyl cellulose. I’m waiting on gastro input after sigmoidoscopy was clear. I’m having more manageable days since starting amitripilene for IBS as my gut and mind don’t seem to communicate well. I found mebeverine caused my stomach to seem paralysed but colofac has worked on occasion when needed. But I haven’t needed it much. I’d like to eat normal and stop being so anxious around food! I don’t feel health professionals get how life limiting it is.

Leo70 profile image
Leo70

You said your GP did some blood tests - did he test you for Coeliac Disease? It is only a thought as you said you have had the symptoms constantly for many years and that you are fairly skinny. I would think it would be a good idea if you could get a referral to see a Gastroenterologist if you are not happy with what your GP has told you.

Konfused profile image
Konfused in reply to Leo70

Thanks, yes he did test for coeliac and apparently negative. I really wasn’t happy with the GP, but I think they’re under such pressure at the moment! I am thinking I’ll go back to the GP and maybe see if I could get a referral to a gastroenterologist, I’d love to get some more answers…

Crystal89 profile image
Crystal89

I would highly recommend mebevrine. I've been on this for 3 times a day for several years now and it helps my ibs symptoms massively. My trigger is stress and anxiety. When I'm anxious, my ibs will flare. I know my triggers and I manage them the best I can however the mebevrine offers me that back up, it helps me to live a normal life again. Especially when I struggle to have a grip on my anxiety. Ibs is certainly used as a blanket term by Dr's as the cause could be many things. But whilst you're getting to the root cause, it's good to have something to help which mebevrine certainly does.

Konfused profile image
Konfused in reply to Crystal89

Thank you , that’s helpful advice.

Konfused profile image
Konfused

Definitely a people pleaser!! I really care what people think of me and hate upsetting anyone. I’ve had therapists tell me this is something I need to work on. Yes I think this causes me a lot of stress and anxiety and raises my cortisol levels. I definitely had an inkling that they were related but it’s very interesting that you ask.

Also I think worrying about symptoms themselves causes a feedback loop.

Konfused profile image
Konfused

I have yes. I’ve tried CBT twice, and even hypnotherapy, but it didn’t do much good unfortunately.

I did get a lot out of therapy though, in terms of insight and perspective.

Lucycal profile image
Lucycal

You could try keeping a food diary if possible to see if your symptoms are worse after eating certain foods. Medications, while not always welcome, can be helpful to ease the symptoms.

IBS can be caused by a tummy bug so maybe that’s what started your problems 15 years ago but unfortunately once you have IBS it is just trying to cope with it as best you can. Wishing the all the best and I hope you get some answers soon.

Ilovecampervans profile image
Ilovecampervans

You sound exactly like me, with 3 to 4 stools in morning, bloating wind etc and years of trying to find out what happening.9 colonoscopies found nothing but diverticular pockets. Finally capsule endoscopy found inflammation and fast transit.

Mebeverinne does help and I take 2 buscapan before bed. I also take a peppermint oil tablet with main meal.

Prior to capsule was told to increase fibre but made me worse so have low fibre diet now. Found out worst triggers are skin on foods ie tomatoes and potatoes and beef. So keep a food diary to see if any triggers and keep on at gp and ask for referral to gastro enterology, I only got referred once I ended up in hospital with a flare up.

Since the capsule endoscopy I'm now on biological injections as can't have other meds due to fibrosis of my lungs. I've been better since.

Good luck

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