Apologies if this comes off as a rant, but I feel like I need to say this somewhere in hopes someone can resonate with what I'm saying within such group where we suffer in a similar manner.Since December last year I had gastroenteritis, went back and forward to the doctors with this as it took over a month to heal from it and was literally laid up in bed with a hot water bottle after the initial symptoms stopped. Barely eating, silling water and in pain.
Move forward 7 months and now it's the IBS label. I've had the blood tests and FIT test done and all normal, great right?
Well within that time I've lost 2 and half stone from not being able to reach my calorie intake daily (I physically can't stomach the amount needed daily) and been doing my own food diaries as well as trying every supplement going for aid. Been back and forward to the doctors again with a referral to the gastroenterology made and an 8 month waiting time.. in the mean time it's been trying peppermint oils, mebeverine, Laxido (tend to be more C than D) and have paid to have an intolerance test myself as to be honest the GP's just dont know what to do with me as I already suffer with other ailments (more on this later apologies for the longevity of this post)
Intolerance test came back with what I'd actually been able to decipher plus a couple of other bits, the major one being dairy not being something I am tolerating well anymore, and I can vouch for this as on 2 occasions of trying dairy again it completely ruined my stomach for several days.
Gluten potentially too though GP tests said negative to this, but for now I've cut it out as I've had Zero help of what to do losing all the weight and what I could and couldn't eat with what it was doing to my body.
Now been forwarded to the dietician... which is where my other ailments come in. I've suffered with mental health problems for several years BUT never had stomach issues before the gastroenteritis let me make this clear. I suffer with GAD and chronic tension headaches and currently going through the loop for ADHD/OCD assessment to see if this is the root of the potential issues of how I've become like I have today.
Now I've spoken to the dietician, what do you think the dietician wants to point the finger at? My mental health being the culprit.. I am well aware by now of the connection between mind and gut and what stress can do to the body (I've suffered with it long enough) and seen it before it happened to me too, but according to their "clinical studies" they've found a link now.
I mean I bet if you pick the worst out of the bunch of most people with IBS they would be suffering with some sort of mental anxiety or anxiousness in general. Also are you telling that that everyone who has IBS now has a mental disorder? If that's the case then surely you've found your answer on how to solve IBS issues and that is to aid people's mental health, which they can't because I've been stuck in this loop for the past 8 years and the furthest I get is to CBT therapy where I could tell them at this point how to write a diary and breath out through mouth and in through their nose, and GP's put you on a dose of antidepressants.
Basically throughout this process I constantly feel like I am a liar to the pain I am in, shunned for everything I need help with, constantly on a waiting list I never reach the end of and I'm honestly sick of it. How any of these experts that go through education can honestly say they know how it feels or what your body is going through mentally or physically is nothing but impregnatable to the human mind and something experience will never be able to replace.
I would rather them just be honest with me and say we don't know what to do and what's causing the pain your in, at least that way I can move forward for myself instead of living with some hope that someone has an answer that'll help me because they never do, it's just more tablets.
If anybody gets through this I thank you, and please don't think I'm ready to do anything stupid, I have a family that depends on me and want to get better, I just can't deal with feeling each "professional" giving the same expression with the same answer. Tell you not to go on the Internet (and trust me I'm not playing doctor Google, I use places like here to try and see if others experience can aid me) but then it's filled with knowledge that you ask the GP's about and they just can't even answer it or disregard you.
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I feel your pain BELIEVE ME! I have been on medication for my mental health since the age of 18, I am now 29years old. I have IBS, Fibromyalgia and PTSD.. I had a lower colonoscopy and results came back 'normal' so further investigation was done and so I am waiting for results for a full colonoscopy and an MRI on my bowel... Medication for Fibromyalgia is pointless. I am waiting for an assessment for ADHD and Autism. I was waiting on NHS list for 3 years and i'm now waiting on the list because I asked my doctor to refer me to Psychiatry UK to be assessed. You should do it too. I also tried mebeverine, peppermint oil and laxido aswell as senna tablets. I also have went from a healthy 16stone to not being able to gain weight over 13stone 12 which is VERY stressful. From size 20UK to a size 16UK (and shrinking more...) .. All clothes are hanging off me and i've had to sell most of my clothes too. I did not skip any meals, diet or exercise and my bowel movements are inconsistent and I am constipated ALOT which results in ruptured piles many times. EVERYTHING upsets my stomach and i've been tested for celiac which was negative. Fingers crossed the consultant gets back to me real soon. I so desperately want to gain weight again.
Thank you for the response and sharing your story too, its sounds like a similar situation to be honest and my heart goes out to you too.I am going through the psychiatristry UK RTC service instead as for the ADHD I got flat out refused with the NHS and have actually recently applied for the autism too as my son has recently been diagnosed with autism and shows similar traits to myself but much stronger when I was younger and even now.
Even then I've had doctors say to me, even then if you know there's nothing we can do for you. The amount of validation given just makes you think why did they take up the profession in the first place.
I don't know how I'd get diagnosed for anything past anxiety or depression to be honest, I sometimes get random pins and needles, I'm constantly fatigued, random pains, asked about fibromyalgia and chronic fatigue syndrome too with no willingness to uptake the symptoms.
I hope you also manage to get some further aid but most of all look after yourself, I think that's what we all can do, we know our own bodies the best.
I'm sorry to hear that, why was you refused by the NHS? I would certainly complain about that. Did they give you a valid reason? (Although I believe no reason is valid)
My son is 4 years old and was diagnosed with Autism when he was 2 years old. I have many family members with Autism too but my sons is more severe than my nieces and nephews who are 10+ years older than him. My uncle who is 40+ has very severe autism and can not hold a conversation with others unless it is very basic.
Ask to see a different doctor or go to a different surgery, it could make all the difference.
Taking care of ourselves is mandatory and very important as we do know ourselves best.
I've been told by numerous doctors of many different specialties that I make things up. It was shocking in the beginning when I was begging for help, now I don't expect more, just consider myself lucky when I get a bit more respect.
A therapist I complained to about how hurtful this is said it's a common complaint among people with chronic pain. Doctors expect to be able to help people, and if they can't they're likely to blame YOU. 😬
Thank you for replying, and sorry to hear your own experience too. It seems to be a pass the book situation and unfortunately it's landed back on us. I mean something must be seriously wrong if they were going back and forth to the GP and "making up" their pain symptoms.
You're not alone! GP -check. Gastro specialist -check. Dietician -check. Talking therapy (whatever) -check. Pain management -waiting for that. And then?? You don't get IBS because you're nuts, it's the other way round. Mind you some antidepressants are believed to help because of the way they operate. I wish amitryptiline didn't mess with my head so much, struggling to hold it together (mainly because the pain messes so much with my sleep). I'm steadily losing weight, I keep drilling extra holes in my belt. I 'only' have IBS.
Well, I'm not a doctor, but it sounds to me as if you developed something called "Post infectious IBS". And I would think the link between mental health and catching an infection in the first place is tenuous to say the least.
Sure, things like stress can wear on a person's immune system, to make the infection harder to resist or fight off. But the correlation is too flimsy basically.
To be honest, I am unsure what the treatment or management strategy might be for post infectious IBS.
I am only making a wild guess, but as a HUGE percentage of our immune system is in our gut then anything that strengthens that might help? And it may also help the gut-brain serotonin connection which may as a side-thing, also boost your mental health?
That's towards the answer I'm leaning in myself and have tried (and still trying) 3/4 different probiotics which I think one has been help slightly towards more regular bowel movements and less pain. I understand serotonin levels play a part in our bodies and such does dopamine when we are chasing a high (honestly I've come on and off 6 different antidepressants one of which I had a severe reaction too, rang an ambulance and still wouldn't treat me in hospital for me).Seems to be a slow healing process but validation is sometimes all you ask for, not to be disregarded or blamed for what's going on in your body especially when I've never lived an unhealthy lifestyle and stayed at a healthy weight throughout my life.
I’m so sorry you are going through this. Two thoughts came to mind when reading your post.
One is that my daughter had a bout of food poisoning a few years back. Since then she has not been able to eat red meat, it makes her feel very ill. So I believe it is possible to completely change the bacteria in the gut. She’s done food intolerance tests and also we paid for her to do the Zoe nutrition thing. She still cannot eat red meat, but she has now changed her diet to exclude a few things that would usually be good for you. So far so good.
Secondly it occurred to me that there could be a link such that those with a genetic disposition to IBS also have a genetic disposition to mental health issues, but the two are not linked in a causal way.
I think it’s very hard when tests come back negative as they make you feel like a fraud. All it means really is that they haven’t found what is causing your symptoms, not that they don’t exist. My last two visits to the doctor have been like this - ‘don’t worry, everything’s normal’… but what about the raging thirst and headache I’ve had for over 3 months? He said perhaps stress, or wait for some other symptom to rear up. Great. Thankfully I’ve improved, but I understand where you’re coming from.
Good luck getting to the root cause.
Edit just to add the Zoe podcasts on gut health are really good. It can take a long time to get the gut flora back. My daughter got a very low score when first tested.
Thank you for the reply and I shall take a listen to the podcasts. Sometimes it's just some validation in a situation from the people you are supposedly seeking help from and that goes with the IBS and mental health stuff, I'm not a know it all, it's why I seek more knowledge from others with experience but I've read plenty of information and books from psychiatrists and others in the field at this point ( and even more importantly people suffering with these conditions) to gain an understanding that none of this is "in your head", just that they haven't found an answer in some retrospect.
The dietician who said it is all down to your mental health when you have obviously just had a gut infection is wrong. Luisa22 is correct in that you have post infectious IBS. Some people are genetically more prone to suffering IBS symptoms after a gut infection than others. Yes, mental health, stress and anxiety are in the mix, but not the entire issue.
If you are suffering from IBS-C with pain, which I am, here are my tips - the recommendation for Alflorex, which is probiotic studied for IBS (1st), then Linaclotide (if you need it) are important. The diet may seem like a struggle, however, try the probiotic first since it may make you more tolerant to different foods.
What is your fibre intake like? To improve constipation in the short term you can try ground flaxseed on your breakfast, starting at 1 teaspoon and increasing at 1 teaspoon every 2-3 days - you'll need to consume extra water with it.
These foods are also high fibre:
8-9 Prunes
2 tablespoon chia seeds (soaked for 10-15 mins in milk or non dairy milk with cereal or water)
Shredded wheat (or if GF: Nutribrex)
60g Quinoa
Wholewheat bread
75g Whole grain pastas (if GF: Buckwheat)
2 Hard pears
5 Dried apricots
90g Raspberries
1 orange (contain a natural laxative)
2 kiwi.
I find that I need to have 1 orange or 2 kiwi a day and then another high fibre fruit later in the day to help with BMs. Introduce new foods and any fibre increases slowly, starting with one new thing at a time, waiting for 2-3 days for a response and keep a food diary. You may not need to consume as much fibre as I do.
For breakfast I make a porridge of 4 tablespoon of oat bran and 4 tablespoon all bran (wheat bran), 2.5 small cups of water and microwave for 10 mins. I then mix in 2 tablespoon of chia seeds and 1 tablespoon ground flaxseed and leave to stand for 15-20 mins since the chia seeds need to form a gel. On top of that I place 8 prunes and eat. The best thing to do is to start with normal oats in similar quantities and, if needed, replace one of the tablespoons of oats with oat bran for a couple of days, carrying on doing this every couple of days until you get to 4 tablespoon of oat bran and 4 tablespoon of oats. Then start replacing with wheat bran in the same manner. You can then add the other ingredients one at a time. You might find you do not need the complete 'recipe' to have a BM. All these individual components are down to tolerance e.g. you may not tolerate wheat (see later about Alflorex), so it is best to keep a food diary (I do this on a spreadsheet) recording symptoms for up to 2-3 days after each change.
I also take 30 drops of ginger extract before bedtime to aid motility. You may need to work up the dose to say 7 drop increments each night.
Exercise can help with BMs. The government recommends 150 mins of moderate exercise (e.g. walking as if you are late for an appointment) or 75 of intense exercise (e.g. jogging) per week. I also have a bit of a walk around straight after breakfast to get things moving.
You need to ensure that you are drinking enough fluids (2 litres of fluid per day).
There is some good advice about constipation here:
There are also medications that help IBS-C (constipation dominant IBS). I suffer from IBS-C and have been prescribed Linaclotide for it (which deals with constipation and the pain - though try Alflorex first, since this had a big impact on the pain for me). I also take Alflorex probiotic which has made me more tolerant to taking in the extra fibre I need for a BM.
Failing dietary measures, you can try Optifibre, which needs to be worked up to a dose according to instructions. You may not need the full dose - watch out for gas and increment to a level that is acceptable for you.
Some people are more prone to constipation due to their intestinal anatomy. Through colonoscopies I have been told that I have a long loopy (redundant) colon. This means that food takes longer to pass through and in the mean time the intestines have more time to suck out water from the stool, drying them out and causing constipation. I have found that I need to consume much more fibre than other people to have regular BMs.
I have also found useful having most of my food at meal times, leaving 4-5 hours of not eating between meals, eating my fruit snack before a meal. This means that your digestive system has time to process each meal. It also allows something called the MMC (migrating motor complex) to run which sweeps food waste from your small intestine into your large intestine. This only happens when you have an empty stomach. When people snack regularly, it prevents the MMC from working properly. I also find the larger meals help to push things along better than drip feeding through snacking.
NOTE: the equivalent of Alflorex in the US is called Align - it contains the same bacteria which has been studied for IBS.
Thank you for the information and taking your time to write out the details it's much appreciated. Some of the things listed I am trying to already implement and have been using alforex for the past 2 months now which feels it has just give me that extra 2% in aid towards a regular stomach (may not seem much but at the moment it's been worth it). Been keeping a food diary to see my calorie intake, and recently bought a flaxseed mix to mix in with just plant based yoghurts as I've been alright with them and they actually taste nice too. Try to do some stretches throughout the day, if anything my issues if I'm honest is I try and do too much to what my body can handle and it backfires so I need to learn to slow down a little in terms of capabilities at times.
I will try the breakfast plan ideas and look towards where I can get more fibre intake but honestly thank you.
well that was a long one for sure, I have had gut issue and ibs longer than you have been alive but the past 3 years have been the worst, have you considered it could be the tap water that’s causing your gut problems? I can’t tolerate tap water unless it has been filtered, we had to have a filter fitted to out mains water just for me to drink, it takes out all the nasties that are in our water, after you had gastroenteritis your gut would have become very sensitive to things, the water companies put chloride and fluoride to the water to kill off bugs but if your gut’s sensitive it will cause you problems. We have to change our filter every 6 months and it comes out bright orange. I have been waiting two years to see my gastroenterologist, I was supposed to se her in September but only yesterday I got a cancellation letter.
And yes stress is a massive factor in ibs but not the root cause, stress agitate the acid in the gut in turn making a flare up worse. Do you get much out door exercise? That helps a lot with mind and gut, I have taken up cycling again after many years not getting on a bike, it has helped me mentally and my ibs is calmer.
Have you had a calprotectin test? It checks for bacteria in the gut? It took my doctors 2 years before I had one done and it showed my levels were well over 500 and normal is 50, that resulted in me having a colonoscopy, that showed up no colitis but did show diverticulitis and internal haemorrhoids.
My issues started when I was 26 years old I am now nearing 62 one thing I have learnt is we are the best ones to help ourselves, yes a doctor can do tests and if they come back normal that’s good, but then we have to take stock of things ourselves. Stop eating anything apart from plain boiled white rice for three days, then add one thing into your diet if after three day no reaction add another new item, if you get a reaction go back to be fore reaction and wait three days.
Also keep a check on your stools compare to the Bristol chart, easily found on google.
Thank you for the information and apologies if it came across as a bit of a rant, I understand it's not as long as a lot of people on here have been suffering with IBS. I think it's just I've already been in the loop with mental health stuff (to be honest still hate calling it that because after 10 years and many medications later I've still no official diagnosis) so this just became the cherry on the cake.I have a partner and son at 4, they both too need aid one with epilepsy and one with autism, so they keep me busy and I take them out where possible as well as my garden is my haven so whenever the sun is out I am out there at least once a day.
I haven't had a calprotectin test that I'm aware of and shall make a note of it but to be honest at this stage I feel even if a mentioned it to the doctors now they wouldn't follow through with it, they want to know where I've heard it from and then palm me off with more medication.
I'm sorry that yourself has had to go through such an ordeal for so long too. I hope it's got easier as your gotten older and been able to accept it too.
Check out the water first, try drinking just bottles water and see how that goes, check on the bottle tho as some are just bottled tap water, make sure it’s spring water, and experiment with it, water from different places affect us differently as they are filtered through different things like rock, lime, sand,chalk etc etc. where are you in the country? I am in Essex and our water is very high in chloride, has your mental health worsened over last five years?
I live in Yorkshire so a lot of the water is sourced locally in the shops and have tried different brands, I did have a brita filter a while back, perhaps it's a good time to pick up a new filter for that and start using it again to be honest. The amount of things that can affect you and no one tells you unless individuals like yourself tell you is quite amazing so thank you.
Do you drink alcohol? That’s a big no no for me, I don’t know if it’s the yeast or the alcohol but it affects me terrible. You can have issues with gluten even if it don’t show up on test, take away food and processed food is also bad if you suffering with ibs. Ibs basically mean they don’t know what is wrong with you as everyone reacts different to certain foods, no doctor know how to treat everyone. Some can be fine with say crisps while another can’t tolerate them but both have same symptoms. If you have started ibs the best you can do is research as much as you can.
Are you aware of fibre? There are two types of fibre soluble and insoluble you need to find the right balance that suits you, we all think that veg are good for us but with ibs so so much, like masked potato is good if your suffering diarrhoea as it soaks up liquid in the colon and raw carrot is not good if you have diarrhoea as it don’t soak up liquid so mash is soluble and raw carrot is insoluble. Onions and garlic are not good for ibs either.
I've never been a big alcohol drinker before this started happening (maybe once a week situation) but now I've tried it twice in the past 7 months and it's just not worth the effects afterwards. I honestly drink green tea in the morning and water all day almost everyday now. I've had some brief information before on the difference between soluble and insoluble fibres and I've realised that garlic is a no no for me now as it always seems to set my stomach off and actually give me more D symptoms.
It seems to be a lot of trial and error but it all just seems exhausting if I'm honest with what I already suffer with.
Again I can only thank you and appreciate people like yourself for giving me further knowledge and information the GP's and dieticians don't seem to offer.
I'm in the same boat. I've had chronic pain and constipation 24/7 for 3 years, had several CT scans, MRI spine, colonoscopy, been to A&E 3 times, seen several consultants all of whom pass me on to somebody else. Had a proctogram last year which showed ' sever narrowing of colon due to diverticular disease, insussception of sigmoiod and rectocele ' . Even though they know this they still won't give me surgery as that would be the only solution, they say it could make pain worse.I think they just fob us off to somebdy else just to get their waiting lists down, then you just go back to the bottom of the que. I'm at the the end of my tether now with the pain, don't sleep and can hardly walk some days, they just don't seem to care
I'm sorry to hear that, and then they wonder why they see a connection between people with issues like yourself and mental health problems. Of course your going to feel down and dismal when your in pain on a daily basis.Unfortunately I've had this issue with my partner too with the hospital waiting lists and they are definitely doing things that get you ticked off to seem like your a patient out and another patient back on the books as it looks better on their records.
I hope you get some help soon but more so try to look after yourself the best you can, that's all we can do.
Uuurrrgghh! Last sentence seems familiar, but I can get days off, at least better days, if I can drug myself to sleep enough. You have something actually physical. I had (?) Crohn's 40 years ago and they didn't hesitate long to whip out half my colon. These days it seems that's the very last resort. It's absolutely not something to take lighly, adjusting to it -if it works- is difficult unless you're still quite young (at least I now I'm less able to handle stuff).
Thanks for sharing your story, it's definitely at times a "figure it out for yourself" scenario that the GP's don't want to admit because they don't want to be held liable. I stated before, tell me in any research from people suffering from a health condition that you aren't going to see some link between some anxiety or raised state if fight or flight when your in pain, aching, suffering and especially when you don't have an answer for it as then the mind tends to conjure up it's own answers. I've suffered with mental health conditions for over 10 years now and medicated for over 8 years and feel there's a false preconception at times that it means I'm lazy or "got to get on with it" even from GP's perspectives. I personally think just like neurodiverse conditions, mental health conditions can also be hereditary (looking down my fathers family tree I've had 4 generations with mental health issues). But out of this I'm still an ordinary adult to talk to, I just function a little different the this typical world we are all expected to fit into to doesn't suit everyone.Apologies going off track, point I'm trying to make is that mind can affect the body, I'm feeling the burnout now, but this isn't what caused the IBS situation, I can put a date to when it started and what caused it and even then everyone I speak too still reads from their script. They may have the qualifications, but a lot of us have the experience of going through these conditions for months and years which they'll never be able to understand.
I'm going through CBT now for the 4th time separate to the IBS issues and it's realising with a lot of these problems that they aren't going to go away, but only you at times can help yourself get better too.
And the medicine cabinet has been filled this year with all sorts to try for some aid 😅 just got to take each day as it comes.
I wish you all the best too in your health and hooe like the rest of us it improves day by day.
It’s so complex isn’t it. I do understand it’s tricky for drs to treat because every case is so individual. Keep searching for your triggers and I wish you well on your journey too
I empathise with your plight. My situation is marginally different but my symptoms are a damn nuisance!
If you are still experiencing diarrhoeal symptoms, and haven’t tried it yet, buy Enterosgel which you can obtain from various sources. It was originally developed as a relieving agent for people who developed diarrhoea after a GI infection. It absorbs the toxins which cause the diarrhoea, and doesn’t affect the gut microbiome. It has been used successfully in IBS-D. I recommended it to a friend a few months ago with lifelong IBS-D, who advised me that it has transformed her life. The other additional measure, would be to try Ferrocalm, which I have recently discovered and which is finally going to release me from 8 year's symptoms of IBS-C. Good luck
Thanks for the extra information and I think I lean more towards the C side of things as I tend to become impacted at times for what reason I'm yet to fully understand. Glad to hear you've found something working for yourself after so long, I can imagine after many years it can feel like a losing battle, that's how it's felt with my mental health issues. I look back on this and see that I did release frustration in a unfortunate time and am still not in any better position but I'm trying my best to focus more on self care and I think that's all we can do, to try and give ourselves the love and care our mind and bodies need as the world currently can be a hectic place.
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