Dear fellow IBS-sufferers. I am a ex-Harvard Medical School researcher and biomedical engineer, and have had quite the ride with experiencing gut problems myself. When talking to doctors about it, I found that there is a huge range in terms of the severity of symptoms that people experience. Some of them say it is all in our heads, while others offer a kind ear but tell me that their hands are tied as they have exhausted treatment options. They also told me that drug development has stagnated, because the financial incentives are not there.
Simply said: IBS sufferers are not willing to pay for better solutions because the problem is not severe enough and often gets solved when you are less stressed, like on vacation. They did say that if I met the criteria, I might qualify for Wegovy which has anecdotally improved symptoms for some people.
I wanted to check in with this community to understand whether these things are true, and how big of a need there is for better understanding of the disease / better treatments.
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acef0804
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IBS ruins every aspect of my life, especially socially. I cant function at the same level as any of my peers anymore and I miss the person I was before this illness deeply. The constant pain is hell. I don’t find that things like going on holiday calm it down, often make it worse. I would be eternally grateful for some sort of real cure
I am not sure that drug development has stagnated because no one is willing to pay. I think it’s more likely that some medications might help some people a little, or for most, might not help at all. if there was a magic bullet that cured IBS we would all be taking it.
My understanding is that drug companies want to make a big profit, like most companies, and they are not going to do that if they focus on medication for IBS. Because we are all different.
Looking online there is much to say about IBS being a functional disorder. There are links with experiences in childhood, Bessel Van der Kolk has written about this in his book “The body keeps the score” and Gabor Mate in his book “When the body says No”.
Some IBS suffers can control the symptoms with restricting the diet, others can’t. Personally, I would be happy to pay a lot of money for a cure and I think many people on this forum would do the same if they could afford it. The difficulty is, and I am sorry to say it, I don’t think there is a cure.
From my perspective I have gone to the ends of the earth to find a cure. I was in so much pain at night for so long, I couldn't get enough sleep. It affects every aspect of my life. I cannot socialise normally since I am unable to eat out and most people's social lives revolve around food. I can't stay in hotels and have to always be self catering if I go on holiday. I have to put a spreadsheet together of all the food I need to take with me even if I go away for a couple of days due to my food intolerances. At one point I couldn't leave the house due to overflow diarrhoea. I felt unable to work and finally ended up deciding to retire early. Since COVID-19 can affect the gut, I am treating myself as 'vulnerable' and never meet others in public without a mask, since I've got myself into a better place by doing loads of research and I don't want to get back to the worst of my symptoms again.
Sometimes, life's stressors have a wearing effect on the body, so even when that stress is gone, the damage has already been done in terms of the microbiome or wearing down of pain control neurons in the brain implicated in IBS, meaning that IBS continues even once life has calmed down.
In terms of desperation, I spent thousands on Nutritional/Functional therapy since I'd given up on the NHS, BUT, they made my symptoms far far worse.
I have been in touch with higher management in the research community to try to get more focus on this and improve the stupid way that research is currently done and funded without anyone taking responsibility for finding a cure - but have got no where (it probably didn't help that COVID-19 hit around that time).
I spent months and months doing my own research to try to improve my symptoms. I feel so passionate about this that I am collating my findings into a website to try to help others.
The people who make these assessments obviously don't have IBS themselves or have it so mildly or they can't or don't have the ability to empathise with others.
IBS puts a massive burden on the economy creating economic inactiveness (unable to work or retire early) and loads of sick days. The financial incentive is there. The problem is, it is an embarrassing topic, which has a stupid name (no one wants to say they have an 'irritable bowel' - just waiting for people to snigger), so we sit there in silence, trying to cover everything up , pretend that we are OK, which adds to the stress and the IBS symptoms. We had a discussion about renaming once on this forum - again that went no where.
Brilliant analysis and narrative! I truly can't add anything to this since you have articulated everything I have done and think about this "mystery" affliction. Only yesterday I was asking my daughter, a Ph.D. trained medical researcher " What do you guys do in your field? I can't believe that with all the thousands of presumed brilliant minds in medicine no one has figured out what's going on in the human digestive system. With decades of dealing with patients and research costing billions and billions of dollars! Not one person!?! There's no other field of practice where this would be tolerated. And, society still holds the medical profession in such high regard.". She had no answer.
We can create the ISS, send astronauts to Mars, create quantum computers anddevelop extremely sophisitcated models of physical systems. But we seem to have remarkably little insight about how humans work. Almost everything seems to be empirical -observed behaviour.
Personally, I think the "holiness" that we bestow on the medical profession needs to be brought down a few notches to move things in the right direction. It really comes down to a matter of demand and supply. Since healthcare is considered to be a top priority by everyone the demand for it is totally inelastic i.e., people want to get/feel better no matter what. This gives all the power to the suppliers. They don't have to strive to make sure that people want what they offer; the demand will always be there. They know they have POWER and they use it. Laws, regulations and policies have always protected them against errors, neglect, abuse, and callousness. In the US the number 3 cause of death is medical malpractice. I can go on for ever, but the bottom line is unless human beings need to change something they rarely do. The only change the medical industrial complex wants is to make more money the easiest way it can. This principle is true whether it is in a for- profit system as in the US or a nationalized system such as in the UK Unfortunately for patients, the easiest way for the medical industrial complex to make more money and gain more power is not through innovation in true treatments for ailments; it is through cost cutting, marketing and PR.
Just one point. My IBS is 10 times worse on holiday. I don't want to to go anymore. Its exhausting. Half .y luggage is food, as even though they say "oh yes it's all gluten free" I soon find that it clearly wasn't. (I am a celiac) with IBS. So mutch more anxiety eg I don't know where the toilets are. My husband is keen to make the most of every minute and I can't walk far. Like I said I am exhausted.!! and feeling worse than normal cos I have been poisoned and full of anxiety. I think they genuinely think the food is gluten free but its so easy to miss something
I've just come back from France. We went to eat in a hotel restaurant and I asked the waitress if there were any gluten free options . She looked at me as though no one had ever asked this before. "Is that to do with flour in the food?"she asked. She then picked out a few things on the menu that she thought might be OK. I chose the most bland things I could in the end and hoped for the best. No ill effects, thank goodness.
I suffered with so called IBS for 12 years! before working out for myself that I was a celiac. Then had a battle to have the tests. When I asked why didn't they do the tests 12 years ago. Suddenly I wasn't celiac after all! I had to change my Doctors and have the tests again. Whitch were positive.
I too had to change my doctors practice recently, I couldn't stand their attitude any longer. I tried to change to the other practice many years ago but they told, me at the time, that so many people had gone to them from my old practice they just couldn't take any more! Luckily this time I managed to change and have been very happy with them up to now.
If you smoke and drink alcohol on a regular basis, stopping those habits will dramatically improve your IBS. That’s two things you can do to make a difference.
Kindly, I did say, IF. It will help some that do. Definitely not a universal answer. But some people will be making their IBS worse by smoking and regular consumption of alcohol. It’s in this group where big improvements can be had. Incidentally I don’t smoke or drink but still have a pretty dire time. It’d be a lot worse if I did have those habits though.
When my IBS started nearly 40 years ago, when my first marriage was on the blink, I found after a few glasses of scotch and coke, I felt much better. Unfortunately, it doesn't work anymore.
I’m really sorry about that Maureen and me too, it’s depressing. I’m just trying to give a tip to a certain group of people that currently smoke and drink regularly that would have a great chance of reducing their symptoms if they gave up the irritation habits.
Don't disagree with anything you said. My point was that while smoking and drinking certainly can aggravate the condition they are not the root causes of IBS (or whatever name they give to it).
You can’t really be sure about anything with a syndrome. That’s the problem. IBD on the other hand is almost certainly made worse by smoking and alcohol. It makes logical sense to me that IBS could be eased off by quitting smoking and regular drinking and worth a try if you’re suffering badly.
I have been told by so many friends and/or family that the pain I suffer every single day, is in my head, that I can control it if I really wanted too ( as if I enjoy suffering pain that honestly makes it so difficult to think straight at times ). That I could think the pain away, that when my bowels are so loose that I cannot leave the house, that I obviously ate something that I shouldn’t have. Also, when I’m constipated, that I haven’t eaten enough roughage or been active enough.
The blame always is pointed toward myself, it has after just over 2 decades caused me to pull away from people, from life really. Travelling is always risky as using toilets that are not mine are so frightening ( germaphobe ) the fear of having to use public toilets sets off an episode. As for going on holiday, no thank you, staycations, those are my holidays. Thankfully we both love staying home, just the two of us.
The only time in my life that IBS has been bearable was on a ketogenic diet. Cutting out all grains did help a lot. That doesn’t mean that it cleared up completely, there was definitely a trade off, the constipation was horrific, backed up for weeks which comes with its own pain. Spicy food does love to aggravate a digestive system that is on overdrive.
Covid!! Boy did that nasty little sucker love my system. My husband has diabetes, yet he didn't get nearly as sick as I did. I nearly died, I have wondered if having IBS helped Covid have a rave! While I was hospitalised my bowels set off, I was on a drip along with IV antibiotics as both my lungs were almost full of fluid, I had Covid pneumonia on top of the rest. It went through me like you wouldn’t believe. I tried for over 2 hrs to hold it ( the staff in resus were rushed off their feet ) I kept asking for the commode saying how desperate I was. Unfortunately my system purged and it was not pretty! The poor nurse, I still feel so bad for her the mess she had to clean up. I was too sick to clean myself. Covid was dissolving my muscles, that was being filtered into my blood stream. Both made me so weak and so sick I could barely stand let alone clean myself up. Had I not been on cpap and connected to the wall ( oxygen ) I maybe could have made it to a toilet and not had to be left to completely purge and left to lay in it until they could sort me out.
I know having IBS helped Covid ravage me as badly as it did, it also made the hospital stay more stressful as I constantly worried that I would soil myself. Once I could walk to the toilet the stress was reduced. Even still, the hospital food didn’t help either as they sure do love wheat and gluten filled foods. IBS has changed my life and as a result my husbands in ways I cannot even put into words. I have suffered with it now for So long ( it really ramped up after our daughter was born 26 years ago ) , honestly it is embarrassing mentioning it to anyone who either has never had it or known a loved who has. People simply do not understand it, nor can they possibly imagine. The lack of empathy or care for sufferers is a constant. There needs to be more understanding, better care for sufferers. It shouldn’t be an illness that lurks in the shadows, I don’t understand why people are too afraid to talk about it, like it’s a dirty little secret. I genuinely hope that in my lifetime there is more research into it. Something that can help us all to live life, thrive instead of survive.
No it's definitely not in my head, happily I don't face that one, but it's hard to get people to comprehend what it does to a sufferer an how it can comprehensively take their lives apart. My GP acknowledges that of those IBS sufferers he knows I'm 'extreme'. But he is out of ideas, as am I, all I can do is hope, pray and stay positive. Tomorrow is invariably better (but the day after may bring me right back down .... and I worry that due to IBS my resilience is minimal, I will have little capacity to manage anything else going awry).
I look forward to spending the rest of my days being yanked round the full spectrum of gastrointestinal delights and shredded by this wretched condition then passing my estate to my family or some nursing home. So if there were an actual fix rather than snake oil I would pay handsomely, really handsomely, to get my life back (my family's too -it puts a huge strain on relationships). And I can see there are many on this forum who are far worse off then me.
I know a little about how research works and it needs the type of championing that other causes have. It needs to become 'sexy'. You won't find many students saying they want to research a cure for IBS will you? (or maybe that is/was you?) Alas the good folk who are pushing this are few and far between and competing with other noble causes and the process of research and pushing up the 'technology readiness levels' (I guess NICE approval at least) requires absolute passion. I think interest is picking up, what with all this talk about the 'gut biome' and development of technologies for personalised medicine.
Acef0804, thanks for digging into this: we rely on folk like you. Please do post any good research you find on this forum.
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