Struggling : Hi, I'm new to this site and never... - IBS Network

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Hi, I'm new to this site and never done anything like this before, but feel totally at my lowest point with my ibs at the moment, had it for 25 years after an incident and like many others started with gastroenteritis. Since that point I missed a lot of school, and have struggled with job option. Over the years I've tried all the medication from anti spasmodic to anti anxiety, I struggle every single day with symptoms of gas, bloating, stomach pains, sometimes up to 10 visits to toilets,.

I've now got no social life during to the stress and worry of being caught short whilst out. I've list most of my friends and the others are getting frustrated at why I can't push myself to try harder! I wish it was that easy, after all these years and how I've felt in certain situations and circumstances I feel like I will never over come this and hate the way I'm living at the moment, sorry for the ramble, just need to get it off my chest and try and find a way out of this

24 Replies

Sorry to hear that you're feeling that way. Many of us on here have felt the same way so you've come to the right place.

As you probably know, after a bout of gastroenteritis, the microbes in our gut can get out of balance leading to many of the problems associated with IBS. One of the ways you can handle this is by following something like the low FODMAP diet. This diet starts by eliminating a range of foods that your body can't digest but your bacteria can. By restricting intake of these foods, the bacteria have less to feast on, and there are fewer side effects. I noticed a significant difference straight away once I cut out wheat.

An alternative or complementary option is probiotics - eating friendly bacteria to compete with the nuisance bacteria and hopefully driving them out. The ones that work the best are, unfortunately, the most expensive: Align and VSL#3 have been approved by US and Canadian authorities for the treatment of IBS. Others on here have suggested alternatives as well.

Your IBS seems to be getting you down an awful lot so I wonder if you've thought about seeing a counsellor or therapist. Sometimes I might suggest this if I think people's IBS could have a psychological cause but in your case I wonder if you might benefit from having someone to talk through your fears and struggles with and find coping mechanisms. It might actually help to improve your IBS as I suspect you've entered a vicious circle that *is* causing anxiety. You can even find therapists who will be happy to do meetings over Skype if you're afraid of going out of the house.

Finally, something to look out for in the future. There is some promising research that an antibiotic called rifaximin may help to significantly reduce symptoms in IBS patients. It's not licensed in the UK for this purpose yet but I suspect it's only a couple of years away so keep your eyes peeled for that as it might help people like you.

Thanks for your reply, I have tried the diets and probiotics without success so far, and have seen a psychologist over a period of time, all without much progress,. I fear for the future as I'm actually hating myife at the moment and can't look forward to anything. I dread anything different , and have to get up hours before I go anywhere out of the normal to settle myself and even then it's still a panic. I'm just not coping well with it at the moment

There is a book called IBS solutions by dr Hunter. If you haven't read it please do. I really hope it helps. I have felt like you and it really helped me and many others on here X

Thanks I'll try it out


Do try Fodmaps way of eating if you haven't done so. I had IBS for 30 years before this was developed and had almost given up on eve being normal again. I also used a self/hypnosis cd from

It has taken me 4 years to get back to almost normal but now I am in control and ha e no pain or bloating at all. I do still look where toilets are just to try to stay calm as after 30 years it is a habit just to make myself not panic!

Good luck

Terriblytired in reply to Hidden

Thanks very much will give it a try again, have tried it before unsuccessfully and dieticians have ruled out my diet as a problem, I don't know how or why though! How do u cope with the panic when u go to new places or go somewhere new without notice, as you have improved

Hidden in reply to Terriblytired

I always carry spare pair of pants with tissues and wipes and for the last two years ha e only needed them once due to being in a traffic jam. I have a card which tells others I need the loo urgently and why so I have used shops, offices etc in the past . It is surprising how kind and understanding people can be. I also have a key to unlock disabled toilets countrywide it's called a RADAR key and cost about £5 I think.

I am no longer embarrassed to rush into toilets and jump queues if I have to whilst telling people why. I also jump out of my car and go behind hedges if necessary. I have also used incontinence pants in the past which gave me confidence. I never needed them once as the psychological safety helped my brain not to panic.

Just try to do things which make you feel safer and never feel embarrassed. I know that is easier said than done but the more you protect yourself with safety mechanisms the more you can conquer your fears. They probably won't go entirely but mine certainly are much easier to manage now.

Good luck

Terriblytired in reply to Hidden

I think that's what I worry about the most, being caught out it would kill me I couldn't cope with it. I just don't think my coping mechanism is not up to all this, I really feel like it's getting too much to cope with day in day out. And I just don't feel like there is any support, feels like even friends I thought understood are getting frustrated with me and jumping ship


Have you tried to see if there is any particular food group that makes things worse

You coukd get a RADAR key that will open any disabled toilet in the UK and an 'I can't wait card' from the IBs Society these shoukd make you feel more confident

Terriblytired in reply to Hidden

Yes, tried food diaries over and over for long periods of time, I have a radar key thanks. Nothing ever seems to make me more confident, the dieticians have stated they dont think food is a major contribution to the problem, feeling very lonely and low and don't know where to turn next, will try the fodmap again I think


Have you seen a A GASTRO SPECIALUST .HAD TEST FOR LACTOSE ETC INtyolerance. have you seen a nutrionist? available oin nhs. im a 25 yr sufferr as well. iv found after 10 yers of mebeverine. mybentol thay make it worse. low fibre, no gassy drinks, tomoatoes, onions, prawns, mushrooms, no bread .low wheat and avoid artifical the best iv been for years. need to try exclusions for at least 2 weeks. also pilates/yoga can help a lot of people. walking when well each day is good for digestion too. stress a big factor. ginger wine can ease pain i find better than codeine. usuha;;y take buscopn fr bloting , pain.

hope something here helps. dont give up. im about ill now 3 days a month instead of 3 times a week. stress triggers mine for sure.

kind regards


Thanks for your reply glad u are improved, unfortunately tried all of the above, and can't find any triggers with food, after seeing nutritionist, one time things won't affect me other times they will, really feels like it has a mind of it'd own, very frustrating, seems the flatulence is getting worse, the worries are getting worse, I'm basically becoming a recluse

Just wondering if you have ever had a comprehensive stool test. This may show up bacteria, Candida or parasites. If your GP won't arrange you can go online and find private companies who do it. Certainly worth a try. Good luck and take care.


iv FOUND FOODS CAN AFFECT OR BE OK WITH DEPENDING ON HOW I AM AT THE TIME IE IF IV HAD IBS RECENTLY OR STRESSED.Exercise can do wonders but of course you have to feel fairly well to do it. imodium works for me when i have D.

Coeinne/ tramadol alst resort if pain very bad. have you tried relaxation with music?

works wonders for some. i do find relaxation /breathing from yoga helps.

Even known it to take away bad ibs pain completely on some occasions.

some recommend CBT Again helps some.Your in a vicious circle as ilness malkes stress worse and stress ibs worse.




Having panic attacks is a dreadful disorder and only those who have experienced them on a regular basis can understand how totally overwhelming they can be as often every nerve in the body is involved.

It can seem that you will never be able to deal with this but believe me you can. I had this many years ago and decided the only way to have any kind of life was to meet it head on but only in very, very small steps.

Choosing an activity that normally freeks you out but you can withdraw from immediately you feel too stressed and increasing the the time you spend doing this by even seconds can retrain the mind to stop ovecompensating and put you back in charge.

Very best wishes,

Thank you, it feels like I'm trapped in this it really does, I do try walking when feeling well enough, just doesn't help transfer to other activities, I have to be on my own so I can bail out if I need to, don't feel like I can be with anyone when I do any activity or travel as I can bail out without it affecting anyone else, I dint feel I can talk openly about things apart from in text, I hate myself and this at the moment

I just don't seem to be a able to find anything that works for long, I think it's just something I may have to put up with, tried all the medication over the years, had all the tests numerous times, tried cbt, tried relaxation techniques, had dieticians, colonoscopy numerous, endoscopy, sigmoid, barium. Nothing seems to help, I feel like it is so ingrained in my bow I'm at a dead end, really exhausted with it

Hi there Terriblytired, I've just been reading your post. You really have been through it. I know you have tried everything and this IBS thing can be exhausting, debilitating and frustrating. Ive suffered for over 20 years and was near recluse at one point, but having changed my life, different town, a different job seem to have turned a corner, though still occasional flair ups, nothing like it was. So don't lose hope. I do think though that regarding the Dr, if they can't help your symptoms, they should help how you are feeling. I urge you to go to your Doctor, ask for a double appointment, none of this 5min crap, and tell them how you feel, what living this way is it doing to your quality of life and that you need more help managing these symptoms. be open that it can get better, don't give up.

Thank you, have booked in with doctors and am currently writing everything down as I find it very difficult to talk about, that way I can let them read. Thanks

That's great, fingers crossed for you. Let us know how you go. Best wishes and stay strong.

You have no doubt tried all Fodmap diets, kept a diary, Probiotics (tablet) etc etc. My husband has found some relief with a medication called silicolgel which you can obtain from Boots.

Although it will never fully cure IBS it has allowed him to regulate his toilet visits and he hardly suffers the pain across his abdomen.

Try it and see.


Terriblytired in reply to JP1954

Thanks for your message, I will give it a try, does he use it 3 times a day every day? Or just when he has bad symptoms?

To start he used twice a day, then went to once a day. Once the symtoms were und control as and when.


Crossing my fingers for you. Let me know after a few weeks if it has helped any.


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