What in particular about IBS causes you to be ... - IBS Network

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What in particular about IBS causes you to be anxious?

MarketingHU profile imageMarketingHU644 Voters
The symptoms
How it affects my social life & relationship(s)
Having to be careful about what I eat
Having to conceal symptoms
How it affects my job
Having to go to the doctor or specialist
Other (tell us in the comments below)
136 Replies
TACITUS profile image

The random and unpredictable intestinal pain.

Margie71 profile image

Having pain and symptoms often and not knowing how to make myself feel better

Thankfully I have eradicated IBS/SIBO. My major concern however relates to the complete lack of understanding and poor treatment of the condition in the UK, so much so that I am taking a nutritionist course to able to offer correct advice to suffers in the future!

Sita505USA profile image
Sita505USA in reply to

Can you tell me how you eradicated it? Many thanks in advance!

rustydog profile image
rustydog in reply to Sita505USA

I’d love to know that too as I am convinced I have SIBO but no one will listen to me!

Fencinggirl profile image
Fencinggirl in reply to

That's great! I'm also sick of the poor treatment by medical professionals and also the stigma around talking about it.

Chancery profile image
Chancery in reply to

You've eradicated it, David? Really? Please share how that miracle was achieved, because a lot of people who've tried every kind of elimination diet going, including the most effective, a FODMAP diet, are still struggling.

in reply to

To Sita505USA rustydog Fencinggirl Chancery

Thanks for your replies and I understand your various frustrations!

Like many I have spent some time getting to where I am today. For 5 years I battled against the lack of understanding to the point I had researched the Gut and had more knowledge than the so called experts I was visiting!

There are many differences between individuals but there are a few key points I think hold true whether you have IBD, IBS or SIBO.

Firstly try and find someone who accepts IBS and SIBO is not in your head, that doesn't try to prescribe drugs or worst, a long list of useless but expensive supplements! This is probably the hardest part, I know it was for me!

Get tested for Crohns, Colitis and Celiacs. Your GP should allow the 2 IBD's tests at least. There is no test for IBS but SIBO can be diagnosed by a lactulose breath test (AKA Hydrogen/methane). You will have to pay for the latter most probably but there are some reasonable inexpensive but reliable home test kits available. PM for the one I used.

If you think about it the clue is in the name, I is for irritable. It's what you put in your body that inflames it. Food, drugs, toxins. This is true for IBD, IBS and SIBO. So I'm afraid there is no magic pill but hard graft on a FODMAP diet. I hear you all moaning.

Done properly it will help what ever your digestive problem is. But it has to be done correctly. firstly its a 3 part process, my journey took 6 months to complete. But you have to stick with it, no little dairy treats or takeaways...or whatever your weakness is! 😊

But on top of low FOD I would highly recommend removing all junk and as much processed food from your diet. Defiantly no alcohol, coffee and highly caffeinated teas too. Painful I know. The whole point of the 6-8 week phase one is to reset your gut. The FOD's are inflammatory to IBS and cause fermentation for SIBO sufferers.

But it's not only the FOD's. Histamines, Sulphites, oxalates, prescription drugs, non prescription drugs, and I also have to say animal food stuffs...I hear you groan even louder. But, many animal proteins and fats are inflammatory to us too.

I went through this. It took over seven years to reach where I am today. I do not have any symptoms now, thank [expletive]. I eat wholly plant based today and I have never felt better and even including before SIBO/IBS. So there is hope...even at 62 as I am!

Start with the Monash University FODMAP app, its worth the few quid it costs. Also look at Kings College London. If you are lucky enough to find or afford a decent dietician always ask for evidence to justify their advice. Evidence is independently derived studies or research. So many untrained people are supported by the sales of useless supplements. If they show you a study by the company who's products they are selling smile sweetly and head for the door!

Good luck!

Fencinggirl profile image
Fencinggirl in reply to

Hi David. Could you tell me what nutritionist course you are taking and how much it cost? While the advice i receive on here is useful i would like to know as much as I can in order to help myself. Low fodmap unfortunately did not work for me.

Daisychain127 profile image
Daisychain127 in reply to

Hello David

I have just replied to Leilah above. You may find it helpful to look at my reply. In short it would appear that my IBS was due to gall bladder problems which had not been diagnosed or investigated until I had a couple of flare ups resulting in hospital admission. Apparently Gall bladder problems can mimic IBS. Its a long story but I now have my life back since the op.

in reply to Daisychain127

Hi Daisychain127

I am glad to hear you are on the mend. I must confess I do no have much knowledge where Gall Bladder's are concerned.

I am just completing a Nutritionist course and so I am interested to learn more. Gallstones are linked to diet. As I am sure you know the stones develop over many years and are attributed to liver bile imbalance. This is believed to be where there is a high level of cholesterol in the diet and other causal factors.

It is also believed that IBS can be a contributing factor rather than Gallstone's mimicking irritable bowel symptoms. I have just skipped through a study that shows a connection with ceftriaxone. I hope you do not mind me asking but did you take this antibiotic during your treatment? certainly there is plenty of evidence now that antibiotics can cause IBS and SIBO...a sign of the over prescription times we live in!

I also note that you are on laxatives. The NHS recommend that we get 30g of fibre in our diet. The standard western diet probably averages nearer 15-20g. May I suggest you up your fibre and reduce your laxatives. Fibre and regular bowel moments are not an enemy. A healthy body should have 2-4 movements a day. Have a look at the Bristol Stool Scale for what a healthy poo looks like!

Good luck!

Daisychain127 profile image
Daisychain127 in reply to

Hello David

Great to get your reply. No I rarely need to take anti biotics as otherwise I am fit and healthy. If I had time from a caring role I would return to the gym. I am still involved with life long learning and training and working self employed as a therapist including IBS issues even though I am in my 70's. I refuse to get old and lose my facuIties and n retired from an extremely mentally and physical profession. I had a gynaecological operation many years ago which resulted in damage to the bowel. I was extremely ill and have had bowel problems ever since so I think it is something that I will have to live with - small price to pay. As a result I am not a candidate for the colonoscopy. If I take certain roughage foods I get pain in my right side as if something is twisted which only goes off if I stop eating fibre. I've told GP's over the years to leave well alone as I know how to deal with it and would have been dead by now if it was something serious. Probably adhesions. Don't need painkiller for it.

My high cholesterol is familial but I can't take statins due to the liver damage that it did which has not come right and probably never will after all these years. I know that gall stones can develop due to high fat in the diet. Fair, fat, forty and female. I have a high protein diet. I inherited my cholesterol issues from my mother fortunately my sons have not inherited it. My mother lived well into her 90's as have all the other female relatives within the family. My mother had her gall bladder removed in her 70's like myself and both my granddaughters in their 20's have had their gall bladders removed. Also probably due to childbirth according to current research.

I am very interested in your research and would like to keep in touch as I am involved with GP's, the NHS and medical and psychological research in a voluntary capacity. GP's are not very helpful with regard to dealing with IBS as I have personally experienced.

Go well.

in reply to Daisychain127

You certainly have had your fair share of troubles but I admire you continued resolve!

You are certainly correct about the NHS and IBS...It took me many years to find my way to the point where I knew more than most of the 'experts' I was talking to.

It is equally annoying because the skill does exist in the mainstream health system. The GI and dietician that finally helped me to full recovery from my IBS & SIBO both practised in the NHS as well as privately.

Unfortunately mainstream medicine in the west treats sickness and doesn't promote wellness! We feel short changed if our GP doesn't hand us a script or arrange a blood test. The truth is that mostly this is treating symptoms and not looking at the route of the problem.

The course I am finishing is run by clinicians, some of who are on the NHS, using classic understanding of our bodies functions, and how we manage to make them sick. The difference is the treatment it offers is lifestyle medicine.

Diet, exercise, wellbeing, smoking and drinking reduction (stopping is better!). We are becoming sicker, 60% of the world's population is either overweight or obese and this is the first indicator of chronic illness. It is simply, what we eat and how little we move to, a lesser extent.

Chronic illness like most cancers, heart disease, type 2 diabetes, hypertension to name a few, are capable of being reversed through diet. The evidence is there but shielded by the food and pharmaceutical industries...much as the tobacco companies did for 60 years after the first study linking cigarettes to lung cancer!

I'm starting to sound like a conspiracy theorist! lol

Good luck...

BlackIsleGirl profile image
BlackIsleGirl in reply to

So what you've done is cut out the foods, medications etc which irritate your gut? Have you been able to return to your previous eating patterns? Are you now able to eat anything you want? I've been doing exactly what you've done for months now and I really miss being able to eat out, I miss takeaway, I miss pizza and bread and pasta, will I get these thing back?

in reply to BlackIsleGirl

Thankfully I am fully recovered. I can eat anything I want though it is true I am not a great lover of junk food so I only have the occasional pizza and I very rarely eat bread as there is little nutritional benefit and too many E numbers! 🙂

To reach your desired end takes a lot of willpower and application along the way. You may need clinic help with specialist medications too. I've no idea what protocol you are following but I get so many messages saying FODMAP doesn't work. When I drill down many are still drinking coffee, alcohol, eating processed foods, takeaways and other inflammatory foods/liquids.

FODMAP is an exclusion diet in phase one and it really needs to be followed to the letter!

Good luck!

Ruggerhead profile image
Ruggerhead in reply to

David I am on a similar journey to you after developing a rake of physical symptoms after being wrongly prescribed a dangerous drug, that is a story for another day. I was diagnosed with SIBO, hydrogen dominant which didnt in a way make sense as i suffer for IBS C . As far as i am told SIBO hydrogen dominant is more IBS D but it was a positive result. I have just sent my stool sample to a lab in Germany, BIOMES i think so will be interested in seeing what my GI system looks like. Since this drug last year, bleeding ulcers ( hospital for 2 weeks) anxiety attacks, IBS and SIBO, and then to cap it off last week NAFLD, at least my liver does not seem to be inflamed. A host of other systematic symptoms that are fobbed off. This story will go further as I am a well known media figure and ex professional athlete, I know my body and what has happened, I just want to know if there is a way back? My pain is constant, so its not typical IBS, Im not sure if SIBO will present as constant pain? I am reluctant to go on antibiotics but I do not drink, smoke and my diet is clean. Interested in your thoughts, also I am a similar age, 60, and would be interested in knowing what course you are doing as like you fed up with conventional Drs, I know they dont know as much as I do, and thats not being arrogant its just a fact, sometimes I have to tell them not about whats happening to me, but the recent testing etc. One consultant just told me, dont take recreational drugs if offered them, you can imagine when i told him i had never taken any drugs. The experts could not explain the ulcers although said it was chemical damage, and kept telling me it was NSAIDS. I kept telling them i had not taken any, they told me that ulcers could not be caused by mental stress, which I'm not sure i believe. And when I asked them could it be either the medication i was on for for? or the PPI's and SSRI's they put me on, again Oh no they would not cause a bleeding ulcer. Well what then? We dont know. Go figure. I just want to be well again like I was before. I did go on FODMAP for about a month and seemed to be strict but did not seem to cure my damage, could it be leaky gut, SIBO ?

Margie71 profile image

Severity of symptoms and not knowing what could help.

FRreedman profile image

Not knowing the site of the nearest toilet.

Eeyore123 profile image

Pain and nausea,

janetmtt profile image


Agelesslass profile image

Scared of messing my pants when running

wisewoman108 profile image
wisewoman108 in reply to Agelesslass

Scared of messing my pants when walking!

Viklou profile image
Viklou in reply to wisewoman108

Scared of messing my pants full stop xxx

CrossStitchCrazy18 profile image
CrossStitchCrazy18 in reply to Agelesslass

I'm scared of messing myself at work especially. At home I can deal with and in public as I probably won't see those people again but at work the embarrassment would kill me.

Gutfeelings profile image

For me its the pain and the unpredictable nature of the episodes including sudden urgent need to go to the toilet with crippling pain. I lost my job after suffering for many years but also have Crohn's disease, diverticulitis and possible microscopic colitis so I often don't know what is causing my symptoms as they are very similar.

LittleMrsT profile image

The very real possibility of not making it to the toilet in time makes me very anxious.

Misscrisps profile image
Misscrisps in reply to LittleMrsT

Me too

FicusElastica profile image

Sudden very painful attacks with little warning ... and whether someone is going to call 999 because they think I am having a heart attack.

Maureen1958 profile image

Having to get things done that have to be done, my fear is one day I won't be able to do what is necessary.

rainbow_123 profile image

Unpredictable flare ups when I'm out and being able to find a toilet in time.

sardane profile image
sardane in reply to rainbow_123

This is the worst - preventing visits to unfamiliar cities/places.

Misscrisps profile image
Misscrisps in reply to rainbow_123

I totally agree. This aspect curtails trips, holidays, travel by public transport etc etc

KirstyIs profile image
KirstyIs in reply to rainbow_123

Same! That's OMG too late feeling is final! Though depends where I am at the time..

GirlAzooga profile image

Exactly what rainbow_123 just said!

Scinder profile image

Not knowing how bad it will be and what to do about it, I don't know what triggers it, so I constantly feel anxious about having an attack.

Chancery profile image

The very worst thing for me is when I go into a D-phase (I used to be purely C-oriented, now I swing from one state to the other) I have to plan leaving the house like a military campaign. I never know if I'm going to be able to get to a toilet. This makes things like longer bus journeys nerve-wracking and I actually have panic attacks from it, which of course makes the IBS symptoms worse.

Misscrisps profile image
Misscrisps in reply to Chancery

Agree totally

rustydog profile image

Never knowing from one day to the next how bad my symptoms will be. Can be fine one day then 2 or 3 days or feeling bad. It’s a vicious roller coaster and makes living a ‘normal’ life really difficult.

Stingella profile image

So many things worry me, as I suffer from ibs D , my job is taking people with learning disabilities out into the community, not always being able to get to a toilet, I love my job . Would like to have more control over my ibs , I've had it for over 30 years , and it still rules my life .

Pig2 profile image
Pig2 in reply to Stingella

Hi, i have a similar job and similar time scale of issues!!! I know just how you feel😢I started fodmap about 8 weeks ago, changed from bran flakes to rice krispies and generally so much better. Fodmap can be difficult to eat out, as keeping off gluten and lactose too so very simple food but not prepared to go back to normal eating habits yet! Can now tell quite soon if have eaten something I shouldn't. Good luck, just have to try everything, bottle of unused silicone gel as next resort! 👍

Stingella profile image
Stingella in reply to Pig2

I use lactose free foods , and keep to gluten free as much as possible, not done the fodmap diet , although I've brought loads of books about it 🥴 . I do use sillicolgel, but I find it's not as strong as imodium, if ibs d is really bad I go for the imodium. Its been made worse as I got diverticulitis in 2018 , told by the surgeon I could of got that because I've suffered from IBS d for so long . I wish you all the best, and hope for a cure .

Pig2 profile image
Pig2 in reply to Stingella

Thanks, you too. I don't think people really understand how awful it is and the stress involved in basic working and then the effect on even the fun things in life such as a day trip, theatre trip or holiday etc! I have been concerned about the number of imodium I take, got up to 3 before going to work and then end up constipated and cycle stars again, hence fodmap as final hope. I have stopped coffee and tea and now drinking peppermint or lemon and ginger, helps me! Get to the point where will try anything! Good luck x

Stingella profile image
Stingella in reply to Pig2

There is another IBS d sufferer where I work , we talk about it alot , but she is the only one who understands. I work shifts the early ones are difficult as I normally have very upset tummy in the morning and like you have to reach for the imodium,sometimes my tummy cramps and churns even then , I feel panicky and very hot , I hope it will just pass if I am not near a toilet. Sometimes I am on & off the toilet so often I worry I will be late for work! I am very picky about what I eat, went out for a meal last week, could only see 2 things on the menu that I felt I could eat . Dont eat spicy, oily, sauces with cheese or butter , and oily fish , ( I don't eat meat , not to do with my ibs ) . I really don't know what the answer is, it is just so hit and miss , tried so much over the years and still It blights my life . Good luck to you too

Chancery profile image
Chancery in reply to Stingella

Forgive me if this is stating the bleeding obvious, Stingella, but I take it you are a vegetarian/vegan, if you don't eat meat? If you're eating the typical vegetarian diet you'll be eating tons of veggies and lentils and the like? They are very laxative, and if you're not eating meat and dairy, which is more binding, you could literally be creating your own problems. As I say, not intending to tread on the toes of your ehthics or teaching you how to suck eggs, but vegetarian/veganism is not the ideal diet for IBS-D.

Purpletara profile image

Pain and nausea.

lbzph profile image

Needing to know where every loo is in case I get an attack of diarrhoea.

shoppaholicsue profile image

Feeling anxious about whether i can access a toilet

Will2015abc profile image

Not being in control.

cofdrop-UK profile image

The urgency, frequency and the pain, also how unwell it makes you feel before, during and after and the amount of times you need to go - it’s like taking clean prep.

SIBO is also a big prolem for me as I have life long non cf bronchiectasis, to the point now where I have a permanent mid-line in and am waiting for a port fitted, as I do my own home IVs, asthma and arthritis.

I feel empathy for you all as I don’t think people who don’t suffer with IBS, even the medical profession, really ‘get it.’ I feel generally people think you just have the’runs’ now and again. How wrong they are.

Love cx

Whoopdedoo profile image

Worry that you will need a toilet in an unknown place

Hi MarketingHU

What an excellent poll. I chose having to conceal symptoms, how it affects my social life and relationships, having to go to the doctor or specialist (this has affected me more recently as I had food poisoning in November 2018 and it turned the IBS completely on it's head and I struggled with daily acute nausea and diarrhoea), I don't like going to the doctor so much as I think how much it costs. I also chose other and that is how it has impacted when I exercise as I power walk and cycle as much as I can and I couldn't do that for a very long time.

Thank you for the poll.


Katerina1 profile image

Unpredictable urgent diarrhea and needing to be near a toilet at all times.

Suecoo66 profile image

Not know when you need the toilet

Niknakk profile image

messing myself

in reply to Niknakk

I think that messing myself isn't the end of the world and won't let it stop me living my life and if I do so what the sky won't fall in and that there's worse things in life than that and get cleaned up and see the funny side of things even though it isn't very nice at the time.

KirstyIs profile image
KirstyIs in reply to

I agree but depends where, who with and how bad... Had times when it was funny and others when mortified! It happens to everyone at some time IBS or not.. having wet wipes and spare knix helps. 🤭

Muddle50 profile image

The worry of it being something sinister

Sparkle44 profile image

The bloating - looking 3-6 months pregnant! The pain sometimes when passing a stool! Nausea! I have lots of vitamin deficiencies which I think are related to IBS. I am not under a specialist for this condition. Was diagnosed a few years back as my calprotectin level was through the roof. Then nothing???

Gutfeelings profile image
Gutfeelings in reply to Sparkle44

Hi Sparkle44

Your comnent about being diagnosed after a high calprotectin level caught my eye so thought I'd just mention that if you had a high calprotectin level you should have been followed up by doctor. I was a nurse for many years before my health made it impossible to keep going. Your post about having vitamin deficiencies sounds similar to mine, as after years of suffering I saw a different gastroenterologist who is more thorough and listened to me, after more detailed bloods I was found to have low b12 which in my case was caused by Crohn's in the ileum where b12 is absorbed. I'm not saying this is whats happening with you but a high calprotectin level with ongoing bowel symptoms and vitamin deficiencies, you should be referred to a gastroenterologist. It may have been a one off raised level but if I were you I'd ask for a repeat test of your stool next time you have a flareup and maybe repeat your bloods and if anything shows then you can be referred to a consultant. Hope I've helped a bit without alarming you but I've suffered for years without the right treatment and there is lots to help now if it does turn out to be inflammatory bowel disease.

Take care

Sparkle44 profile image
Sparkle44 in reply to Gutfeelings

Hi thanks so much for your response! Yeah I thought it was odd that they did a colonoscopy & because they didn’t see anything they said it’s IBS and that was the end of that. No further advice or support. My Calprotectin level in 2011 flagged up as being 527ug/g (normal range 0-60) There was no explanation of what caused this severe spike?? So last year I was referred to Gastroenterology at St Thomas due to all my Vit deficiencies and cause I get intermittent pain under the right side of my rib. Vit deficiencies include: Folate 2ug/l (normal range 3.9-26.8) /Inorganic Phosphate 0.70mmol/l (normal range 0.81-1.45) / low Ferritin 37ug/l (13-150) / low Vit D 42nmol/l (50-120). I have had issues with my Folate & Phosphate for over a year!!! I have just taken a month of Folic Acid which increased it & when I came off it it went back down! My Homecystiene is now increased to 30 (normal range 0-15) it was the eye clinic who suggested this test?? They think this could be elevated due to low Folate issues! I have had terrible cholesterol results for over 10 years. I am a size 14-16 in clothing. GP is reluctant to put me on meds!

Ops, I went off track slightly! Gastro at St Thomas just did a camera view both ends and offered no follow up? Yet in my consult she said she would start with that and then do further investigations? I am just tired of their slackness! My body feels sick but no one can find the cause!

I have primary Lymphedema & a benign micro Adenoma also!

Main symptoms:

Extreme fatigue

Memory issues

Skin crawling sensation

Visual disturbance / left eye

Tingling in left side of face / cramping


IBS symptoms

Aches & pains / lower back /feet

Hair loss

Nose bleeds / left nose

Night time thirst / sweating

Urine issues

Faint & nauseous in morning

Honestly, I could go on!!!

Gutfeelings profile image
Gutfeelings in reply to Sparkle44


Sorry this is just a quick reply as my tum has been playing up since yesterday afternoon and all morning so my brain not working lol. I have a few similar things to you that could be explained by the vitamin deficiencies which I honestly never realised how unwell they can make you feel especially when you have more than one. I was always able to take vitamins and supplements without problems I used to take spatone iron+ for anaemia as I have severe endometriosis which tortured me from age 13 onwards so had chronic recurring anaemia but its different now as the anaemia I have through my gut disorders I can no longer take oral iron/vitamins so I feel exhausted despite iron infusions. That said I have low b12 treated by injections every 8wks and like you I have low Vit D (treated finally by injections) and low folate which despite my asking has not yet been given in injection form. I've tried it orally tablets, liquid, half a tablet.. sprays..everytime I get a flareup of pain and diarrhoea! As my results are just under normal I don't think its looked at as very high on the treatment list for me but its certainly a very important vitamin and I'm sure some of my fatigue is related to it being low.

After working in hospitals for many years I am aware that sometimes followup appointments are not always issued and despite our nhs doing its best it is under enormous pressure and I now keep a close eye on both my appointments and my mum's as she has lot of health issues. It may be that if you were seen within the last year if you ring the secretary of the gastro team you may be able to get a followup or she can pull your clinic letter up and request your notes for the consultant to review which may lead to an appointment, or you could try ringing reception of the gastro clinic as they may even be able to generate a followup we used to be able to do this sometimes if it were for certain clinics. Failing that I would ask your gp to refer you back for further investigations. Have you had a bowel mri? Thats what I had and they could see my ileum was a bit enlarged plus my severe symptoms plus the huge amount of antidiarrhoea meds I was taking plus buscopan, mebeverine and codeine in my painkillers it was obvious there was more going on with me. Also my blood results showed marked iron deficiency anaemia and when I told my consultant I was not having periods due to hormone treatment for endometriosis she was quite concerned at how anaemic I was... thats when I was diagnosed, my colonoscopy at the time was normal too. I had a very bad time in 2008 which resulted in me being admitted on intravenous fluids for 8 days. At the end of my time in hospital I had bowel biopsies taken but unfortunately I was never told they showed I had probable microscopic colitis so I returned to work I'd just changed my role due to struggling with diarrhoea and pain to get to work so thought as I'd been told I had severe functional gut disorder and history of bowel endometriosis I tried to keep going..it was very hard and sometimes impossible resulting in me not eating to try and manage it. Sorry going on now but don't want others to go through trying to self manage a condition without definitive diagnosis as each day felt like I'd worked a week solid! I was so worn out and my life revolved around trying to get to work and stay there as I loved nursing.

Anyway I think they should definitely do some more tests and monitoring for you and I hope you get some proper answers asap hun.

Take care

Sparkle44 profile image
Sparkle44 in reply to Gutfeelings

Thank you! I am defo going to get back to you just away for the weekend in a log cabin x

Sparkle44 profile image
Sparkle44 in reply to Sparkle44

Hi Gutfeelings, the box would not let me reply to you twice so I hope you get this message 🤗 How is your tummy now? Hope you are feeling a little better! Gosh, sounds as though you have a lot of painful & draining conditions! I think the injections sound ideal as fast working straight into the vein. I think you can also get folate injections. I think you are a beautiful miracle given what you have to contend with daily!! I am going to speak to my GP about a re-referral and MRI under gastro because I don’t think it’s acceptable to scan a patient and for the consultants to do no follow up, or not even an appointment to explain the results. That seems to be the policy at St Thomas? I was promised the world in my initial consult, and was never told we will scan you and potentially not see you again?? My GP is very much a referrer and often says she is not a specialist. Even once diagnosed she rarely follows up on the advice given 🙈 Do you know much about Homecystiene? Is 30 a dangerous level??

Eliana5 profile image

I have a weak pelvic floor which makes me unable to have a movement on my own. Probiotics don't help. Fiber does not help. It is hard to live, function or even work or volunteer with severe constipation. I just got engaged to a wonderful man..but I have had to keep this as my what seems "dirty little secret" that the only thing that works for me is taking a lot of stimulant laxatives on a Saturday night. I have to take 8 Senna 8.6mg tablets. The next day I have to use Apple juice and strong coffee. I have my own apartment. I do this on Sunday's because I feel it is the only private time I get. I'm sure residents know which is embarrassing..because they can hear my toilet flushing all day. I can't have a social life or even see my fiance and have to make up lies and excuses why I can't see him..because I'm too embarrassed to tell him I suffer from Chronic constipation. I have tried stool softeners, Trulance..Relistor. Nothing works except Senna. It's no way to live.

Jayneelizabeth profile image
Jayneelizabeth in reply to Eliana5

I wonder if you have tried gentle abdominal exercises in Pilates? I think the tummy can get lazy and untoned as you get older; there's various muscles that do better inside that can be toned; i find this has made a difference over the months.

Kariss profile image

Anxiety that my IBS will affect me during a social occasion and trigger a painful episode which will then last several days.

howarddavies profile image

The constant unpredictable nature of it

Will1234 profile image

One of the main anxiety causes , is having to go somewhere , like a meeting , or social occasion and being concerned about the unpredictability of bowel issues and feeling embarrassed if a sudden and urgent need occurs .

Constant abdominal pain

LizzieAFib profile image

The long term effect on my health because of my gut problems

Daisychain127 profile image

The most difficult issue is knowing where the nearest toilet is and not being more than a few minutes away from a toilet if out and about. Think twice before going out.

Rosepetal60 profile image

Having to be careful of what I eat or drink as in having to remind myself not to drink coffee, unless I am at home. ( I rarely drink coffee anyway but the temptation is always there) Other is: if out, know where available toilets are and take a radar key and /or loose change with me for payment into Public toilets if needed.

Aligil profile image

The worry of having an accident especially if I don't know where the loo is.

Eastbourne11 profile image

I am cross that GP's do not know anything about IBS D.

in reply to Eastbourne11

The GPS are rubbish aren't they?

Eastbourne11 profile image

thanks for the poll. I only hope someone with BRAINS sees it . Someone please come up with an idea so that we (with IBS D) can go out without worrying.

Eternity78 profile image

became house bound ..can't commit to an appointment ..i even discovered a breast Abnormal mass ..and decided NOT to treat it cuz i can't get out of the house ..I'm slowly dying ..and i'm fine with it ..as I no longer want to live a life Literally Controlled by IBS /D

Gutfeelings profile image
Gutfeelings in reply to Eternity78

Hi Eternity78

Sending hugs to you I'm sorry you are feeling so down with your health I totally understand how you feel. I too can't get out of the house most of the time and my life is completely different to just a few yrs ago. However I urge you to seek help from the breast care team at your local hospital. They will know how to direct your care so that you can access them, I had a breast lump a couple of yrs ago and they were very good I explained my difficulties with my bowel etc and we managed. I had tests biopsies etc and thankfully it was a fatty lump but please don't leave it, talk to someone and seek help it is often the unknown aspects of treatment that scare us the most and there is always a way...

Thinking of you

Take care x

EngineerCMM1 profile image

Concerned it could be something else, even though I've had Colonoscopy, Stool Sample & Blood tests!

LizzieAFib profile image

Having to follow a limited diet and it’s impact as not able to eat healthy foods including fruit, veg, legumes and that also impacts on eating out - I often choose not to accept invitations because it makes life so complicated, eg can’t eat onions and garlic. I have been following FODMAPS for more than 5 years, don’t eat wheat or consume milk, cream etc and find it so frustrating that nothing is making the pain and D go away and no help from NHS.

GwenDee profile image
GwenDee in reply to LizzieAFib

I rarely even try to eat restaurant food. I'm testing more foods, but I eat a wide variety -- usually in soups I make from scratch, with as much organic everything as I can afford (and find). I eat a lot of vegetables, low-fodmap fruits, decent whole meats, and as much good fat (saturated esp: coconut oil and butter, plus a bit of extra-virgin olive oil and avocado oil, organic if I can). I react far more to lactose and to fats early in the day!

Soup I'm eating at the moment has ground turkey cooked in coconut oil, fresh carrots, canned diced tomatoes (organic this time), fresh kale, canned green beans, fresh red pepper chunks, a stick of butter, konjac noodles (shirataki fettuccini), spices like ginger and dried oregano and chives, dried seaweed, psyllium husks dissolved/ mixed into water, and a bit of good low-garlic and -onion bouillon. I eat the soup usually for four days, and very what I supplement it with. I like egg crepes (eggs + water fried up thin) with peanut butter, or salmon or shrimp + lemon juice, and my own veggie tray (cukes, pepper slices, maybe radishes, tomatoes) and cheese. As I'm also diabetic I do have to watch carbs; fat is my savior here, fat and meat, really. It's helped a lot, but I still working on it all. I found kefir, which I really like, so I drink a half glass of that daily,

My view on this is that in no way do I let it stop me living my life the way I want to and if I have an accident then so what? The world isn't likely to end and there's worse things than that in life!

Booth29 profile image

Worrying it’s something more serious

Linley profile image

The unpredictability of when an attack may catch you out

Daisychain127 profile image

Hello. I suffered from IBS for a number of years and thought that I would have to give up work. To cut a long story short had a couple of hospital admissions for extreme pain and on one occasion was overdosed on morphine in the hospital. Took me ages to be able to think straight that. The pain was something that is indescribable much worse than having labour pains. After tests I was diagnosed with gall bladder problems with a stone being stuck in the wrong place. I therefore had to go to a specialist hospital for surgery as the local hospitals would not operate due to possible complications. I had my operation in December and spent five days in hospital. I am still careful about what I eat for one reason I don't want to put the 2 stone on that I lost and don't want to go down the same route again even though I know I have had the gall bladder removed.

I try to eat a low fat diet (as I had before my op due to cholesterol issues that can't be treated due to severe reaction to statins causing liver damage) and have very much reduced the amount that I eat. As a result my weight is stable.

I now have no IBS issues. I have to take laxatives daily. I can't believe it - free at last but still navigate by toilets just in case. Can't believe I've got my life back. Only recently learned that the symptoms of IBS are similar to gall bladder problems. Think I may have had gall bladder problems over the years without knowing.

Perhaps its worth anyone coping with IBS should request a gall stone investigation something that was never suggested with me.

Hope this helps.

Lorcanzippy profile image

I hate it so much..it completely takes over my life and stop me from doing so many things...I could do if I didn't have it.

Graham62a profile image

You have nothing related to knowing where toilets are when you go out?

Eternity78 profile image

In addition to all of the above ..the inability to make plans or schedule a medical appointment because you know ...( it's unpredictable ) I try to find ( walk in ) clinics that allow to come any time without appointments just pick a card and wait ..still this is an anxious situation ..but the only way available for our disabling condition !!

Yoga25 profile image

Urgency and Anxiety

Sidknee profile image

Being told in a new job that some toilets are to far from where I am working and I would need to call someone to take over whiclst I went.

Rachmaninoff profile image

Worrying that it may be something more sinister and not IBS

IBStayaway profile image

Weight loss! Hard fight to try to gain back any weight that I’ve lost (11-12 lbs), & then suddenly I’m back around 100 lbs (50 kilos), again, for no apparent reason. So maddening & scary.

Eliana5 profile image
Eliana5 in reply to IBStayaway

I know this is an older post..but wanted to respond because this happened to me about a year ago. I'm 5'5 and at that time needed to lose weight, so started walking. Then I started having painful spasms again..and I started to skip meals afraid I couldn't digest this or that. It got worse. Then I got afraid to eat Hamburgers, wraps, burritos, pizza. My meals then starting to consist of rice..the ones you place in a microwave for 1 minute. My meals went from having a healthy appetite to fear of eating. So rice or maybe oatmeal or yogurt was it. I started looking horrible. My hair fell out. My face looked strained. I felt like I aged about 10 years. I sent down to 148 (which I kind of liked, as it improved my walking and lower back pain) but I kept losing. 128lbs..by this time I hated looking at myself in the mirror. My ribs and chest bones could be seen. My arms looked like sticks. I got the "oh my gosh she is getting really skinny, concerned comments". I cried often because I got dismissed by gastro's. Then I went down to 119 and I was miserable. I hated going out or would wear baggy clothes. When I went to a restaurant I got the "concerned" looks from waitress that were used to seeing me weigh more. At that time I wished I was back to being overweight. My jean size went from a size 12 to a size 6. Size small sweatpants were baggy on me. I would not let anyone take pictures of me if I was out. Hair kept falling out. My checks looked hollow. It was quite nightmarish and frightened. I then got down to an anorexic 104. I cried all the time not knowing what to do. I finally went to a dietician. She tried to get my insurance to cover nutrition to gain weight such as Belvita soft bars and Ensure or Boost. They told her unless I was tube feeding they would not pay and I was very low income at that time. I did get some financial help from a supervisor at a clinic I go to. She would bring over a case of Ensure nutrition drink. Gradually I started to gain weight. I was told to drink 3 a day. I made myself eat two meals a day then three. Today I am no longer too thin. But I do fear eating some things such as pizza or hamburgers.

Just wondering how you are doing now?

debbiejayn profile image

The fact that I've been diagnosed at 60..my symptoms dont seem to fit and I'm scared its something else..

Knowing that not a lot can be done to cure it forever ! This condition has a massive impact on people it nearly destroyed me in my younger years .

pwllmawr2 profile image

Not being listened to, people just don’t believe how much pain it causes me every day.

Purple_Cats profile image

Having to know where a toilet is when I'm out and about

Eliana5 profile image

Embarrassed about chronic and severe constipation. Having to lie to my boyfriend about my weekends (since they involve taking laxatives)..unable to tell him the Truth. Frustrating about sometimes having to go to E.R. for impaction and enema. Not being able to tell Residents and friends about this. Getting dismissed by Gastroenterologists. Especially " eat more fiber!" "Drink lots of water". Which of course does not work. Unable to have a bowel movement on my own. Having to take one of the maximum on laxative tablets I take. Stinky stools. Having to drink coffee and apple juice with the Senna. Not being able or too uncomfortable to do activities I enjoy. Not much of a social life.

Kah1 profile image

Sitting on the toilet for over 30 mins with nothing happening and then feeling the need to go the minute I get off!

Andann profile image

Needing to be near toilet facilities so much of the time.

Worrying that it could be something more serious which in turn makes the symptoms worse.

Lillywoods profile image
Lillywoods in reply to Northeastfootballfan

I know just how you feel

debbiejayn profile image

Concerned it may be something more serious.

b1b1b1 profile image

Worry when going out.

The Anxiety it causes

Naxprop profile image

Concern it will mask more serious illness

Sciamachy profile image

Further triggers:1. The unpredictability and fast on set of periods of incontinence. 2. The severe pain experienced during a flare up; it sometimes renders me unable to move.

Lillywoods profile image

How I’m going to be able to live with ibs

Tigger07 profile image

Having to always find a loo when I'm out

fedupwithLG profile image

Leaky gas and not knowing if i'm okay or not when i'm around people. Knocks my confidence so much when people react to me (like i smell) when i'm not even aware myself.

Autumn_Leaves profile image

Sleep disturbance and insomnia

BlueDevon profile image

What causes me to be anxious in the mornings is the not knowing how I’m going to feel.I think I sometimes over think things and my whole day is ruled by toilet troubles.

artisticmum profile image

Worrying about whether I will need the loo when going out and if stomach cramps will come on suddenly.

Curious8654 profile image

Knowing you have these random pains constantly or sometime not atall and constantly worring if it is something the docs have missed and its life threatening.. knowing there is no cure to help you have to get on with it and also the fact you can be OK one day and next suddenly your life changes

angelwings52 profile image

That IBS can mask other health issues - I had gallstones that weren't diagnosed for 18 months and recently chronically inflamed fallopian tubes that caused a lot of pain (this was only diagnosed after a hysterectomy).

Catty1234 profile image

Not knowing for sure if it’s something sinister

Carol-Ann27 profile image

Trying to find a toilet

bellumps profile image

Once you have had a few accidents, you'll never forget, and will only to put it you can be near a toilet.

GwenDee profile image
GwenDee in reply to bellumps

... and a shower. And a sink. And a washing machine. And a garbage liner you can take outside and stash in a container, triple-bagged for kindness to the garbage collectors.

pwllmawr2 profile image

The constant lower abdominal pain I'm still having after all these years, test after test after test, tried everything under the sun to no avail.

Fernymv profile image

Just constantly feeling unwell almost all the time, my anxiety just makes it worse!

Luisa22 profile image

I can be feeling ok then a terrible flare hits me out of nowhere. Like torture. I feel I can't tell when torture is going to come. It scares me.

hazygrif profile image


Toby-HU profile image

In regards to "other" I just find it off putting when pain / discomfort comes on when I am out with the wife and I feel yucky and struggle with public transport! I don't go anywhere on my own anymore , only go out with the wife!

Linedanceing profile image

The urgency, sometimes don't make it in time to the toilet

GwenDee profile image

Symptoms are many and varying. The ONE that is the worst for me for IBS-D is incontinent diarrhea. Thank Goddess for low-fodmap; am no longer totally housebound after ... incidents in public settings. 😱

heartmatters1 profile image

worrying about leaving the house when having a flare-up.

Kellykat profile image

leaving home and having a flare up while out

Bhopperchicken profile image

Being ready to go somewhere and onset of Diarrhea. Not going after all. I feel like a recluse at times. I am thankful for my husband who goes to run errands alone.

SurfingSteve profile image

The often crippling stomach cramps or nausea and not knowing when it will end

inaglassjar profile image

The extreme efforts you have to make constantly to get the issue understood. GPs good with symptoms but do not follow through to find a cause.

Oldun2 profile image

Worrrying where the nearest toilet is.

Being exhausted & fatigue &in pain constantly. Will I have to feel this the rest of my days🥺

Teal1953 profile image

Having to make sure there is a toilet nearby when I go out.

The worst thing is excessive flatulence and the embarrassment of it! 😳

Casand11 profile image

Feeling at a loss to finding a solution a d little understanding from GP