What in particular about IBS causes you to be anxious?

326 voters
Having to be careful aboutwhat I eatThe symptomsHaving to conceal symptomsHow it affects my social life &relationship(s)How it affects my jobHaving to go to the doctor orspecialistOther (tell us in thecomments below)
AnswerVotes
Having to be careful about what I eat142
The symptoms208
Having to conceal symptoms106
How it affects my social life & relationship(s)174
How it affects my job68
Having to go to the doctor or specialist54
Other (tell us in the comments below)33
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82 Replies
oldestnewest

The random and unpredictable intestinal pain.

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

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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!

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

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

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

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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.

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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!

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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.

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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.

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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!

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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.

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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...

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Severity of symptoms and not knowing what could help.

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Not knowing the site of the nearest toilet.

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Pain and nausea,

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Bloating

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Scared of messing my pants when running

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Scared of messing my pants when walking!

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Scared of messing my pants full stop xxx

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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.

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

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Me too

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

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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.

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

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

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

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

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Exactly what rainbow_123 just said!

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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.

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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.

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Agree totally

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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.

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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 .

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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! 👍

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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 .

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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

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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

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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.

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Pain and nausea.

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

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Feeling anxious about whether i can access a toilet

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Not being in control.

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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

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Worry that you will need a toilet in an unknown place

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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.

Alicia

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

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Not know when you need the toilet

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messing myself

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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.

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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. 🤭

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The worry of it being something sinister

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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???

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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

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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

Bloating

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!!!

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Hi,

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

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

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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??

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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.

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

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The constant unpredictable nature of it

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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 .

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Constant abdominal pain

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

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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.

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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.

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

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

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The GPS are rubbish aren't they?

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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.

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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

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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

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

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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.

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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!

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Worrying it’s something more serious

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The unpredictability of when an attack may catch you out

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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.

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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.

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

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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 !!

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