Where do I start?

Hello,I am new to this group but am relieved I am not alone.I am 32 and been diagnosed with IBS about 8 years now.I have had cognitive therapy,been on mebeverine (anti-spasmodic) loperamide and even buscopan.Its safe to say its a complex health issue as the drugs relieve symptoms sometimes and also can make them worse.I do believe anxiety/stress play a big part but also that if you are 'caught short' this can cause anxiety in itself so kind of a catch 22 situation.Public places for me are a major problem and the need to always know where available toilets are wherever I go.I am struggling to (even after 8 years) figure out what foods worsen my condition as I am fine for a couple of months then fine the next.Anyone got any idea where I can start?

18 Replies

  • Hi, I know exactly what you mean. I have suffered for 20yrs with IBS and I am the same as you,tried all the available medications but none of them worked for me. Even had an anti-depressant but even on the lowest possible dose I slept all the time, slept for three full days once without waking, so needless to say I came off that medication pretty quick. The anxiety side of my IBS has come on at various times in the last 20yrs, funnily enough never when I expect it to. I can have been under horrendous stress and trauma but my IBS anxiety will come on 6months after! You'd think I'd get it at the time wouldnt you.....but for some bizarre reason I don't. The toilet issue is a big one for me and I wont go anywhere at the moment where I can't get access to one. Even being stuck in a traffic jam freaks me out at the moment and sets it off. I dont know how your IBS anxiety effects you but when mine starts I feel that urgency to get to a toilet, but also I come over very hot, like I am burning up, feel nauseaous, headachy and when I have tried to battle it too long(out of pure anger & stubborness) I have actually nearly blacked out! The pain in my abdomen after can last for several days, although I am always in pain so kind of used to that. Have you tried anti-anxiety meds? Thinking of giving them a try myself, just to see if they help but you've always got side effects to deal with. Have you ordered one of those Rader keys? Someone posted about them, they give you access to all locked disabled toilets in the UK & only cost £6. It might help ease your anxiety if you know you can get into a private toilet.Have you tried the FODMAPS diet? A lot of people seem to have had success on it & have found foods that trigger their IBS or make it worse, might be worth a try. Have you tried any alternative therapies like acupuncture or hypnosis? Sometimes they can work wonders for people, not everyone, but it might be worth a try. Take care & hope you can find something that helps.

  • Yes I'm exactly the same, it's not easy to cope with, I take loperamide & codeine on a daily basis, practice yoga & calm breathing & like you always check out the nearest available toilets. However since following the fod-map diet I have been much better. Anything containing lactose & wheat are a big trigger for "D" also many fruits & veg have me running so it is quite a limiting diet & yes some days are worse, others are normal with no apparent reason. I think that is the nature of ibs, very unpredictable but you have to find ways to cope & not let it stop you from doing anything. Maintaining a sense of humour is essential & always plan ahead, good luck. :)

  • How much loperamide and codeine do you take daily ?

    I take them except on days that can stay at home.

  • I usually take between 1-3 codeine phosphate, 30mg, each day & on a really bad day 1 loperamide too but the bad days are much less frequent since trying the fodmap diet. I think I had a tummy bug last week so had to resort to taking both just to be able to leave the house. Like you if I am having a day at home which is very rare but then I try not to take any. However I wouldn't recommend this dose for anyone else, it suits me & I never get constipated, it's trial & error & anxiety plays a big part too.

  • I plan a lot be before I travel such as when i was in NYC and London I downloaded and saved the lists of stations where toilets were available and plan my route accordingly. I would also use huge distractions such as loud music, doing my makeup, reading a magazine or even working on my blog.

    After many years of suffering it still gets me everytime, when in very bad situations where i can't get out of I tap chest and use deep breaths and also i wear a mini tena pad everyday. It HELPs to know that its there trust me!.

    there are times where you cannot get out or the train stops but if i can walk anywhere i chose that option rather than public transport. I only work part-time now because the stress of work made my symptoms bad. I eat well and avoid lots of things especially if im traveling soon or the next day i won't eat any gluten, dairy, eggs, chocolate, drink lots of water any stimulants.

    Its a sad life but 13 years on this is what I've found to work. Also i take imodium and anti-anxiety meds everyday.

    Let me know if you have other ways in coping. I live in Hong Kong so travel is all about bridges, tunnels highways, boats, traffic and very expensive free from and western food too!


  • I would try FODMAPS you can get a Monash University app which makes it easy.

    Also try self hypnosis from ibsaudioprogram100 for the anxiety

    If you don't want to fully do Fodmap to begin with try cutting out lactose and replacing with coconut milk for example for a week and see if any difference then try gluten free for a few weeks. Hard cheese is lactose free as is butter though most people don't realise that it's only soft cheese and milk/cream that contain the lactose as it is the whey which contains it not the curds.

    Radar key has been a real help for me together with the 'I can't wait' toilet card which I have used in shops and offices.

    Good luck

  • I am again telling all who suffer from ibsD which is an anxiety issue not food to try an antihistamine called Phenergan which has helped me after 40 years of suffering. It has a sedative in it which relaxes you for sleep. My g.p has said okay to taking it and I am now starting my fifth week with no return of the ibsD.

    If you wish to try it it's an over the counter tablet and you just say it's for travel sickness.

    The first night take 2 tablets and one each night thereafter. You may feel zonked the first morning but that goes away. This little pill has been a miracle.

    I have stopped taking diazapam , Imodium, sleeping tablets. Worth a try.

    I don't know if it would work if you have Ibs due to food though. £7 for 52 tablets.

    Good luck and fingers crossed if you do try them they work for you too.

  • Could be worth a try,my anxiety is always worse in the morning and I don't sleep that well due to my 4 yr old daughter also being a light sleeper and wakes me up.

  • In response to your earlier post about Phenergan I did buy some, however as I like a couple of alcoholic beverages in the evenings, I haven't dared to try it yet. Have you ever drunk alcohol and then taken it?

    Also did you have symptoms other than diarrhoea with your IBS such as gas, bloating etc and, if so, did it get rid of them too?

    The FODMAPs diet has let me sort out my trigger foods and I keep very well on it, but as some of my favourite foods are a red light, I'd really prefer to solve my problems with a pill if poss!

  • I don't drink alcohol at all so I can't say if it would help but I would rather do without alcohol for a few days and get my ibs sorted. I don't have a bloated tummy but did have gas . Never had constipation always diarrhoea . My ibs isn't food affected just anxiety.

    Good luck and give it a try but I would stop the alcohol while trying them.

  • My anxiety was worse in the mornings too always woke up with a churning in the tummy and for no good reason. I would be wary of taking the first two tablets with having a four year old unless you have somebody there with you. They might not affect you like they did me but it was a day in bed after the first two but great ever since and that's me going into my fifth week. I just can't emphasise enough the change in my life . Wonderful .

  • After 35 years or so with this, you would have thought by now, there was a better and faster acting medicine to control it, sadly this is not the case. I dont use Colpomil (peppermint) type capsules any longer, because I have had an increase in acid I produce, so I keep away from it. Your left with Colofac, mebeverine and Buscapam. I generally use Mebeverine for mild flare ups, but the problem is finding the right type. The tablet that works better is the glossy coated Mebeverine, the ones without covering can get stuck in your throat, or dissolve far to quickly. With a bigger flare up l like I had for Three weeks recently, I changed to 3 times day Buscapam, These eventually bought it under control within 3-4 days, eating very bland none spicy foods while doing so. Its better if you can get it from your GP on prescription, as its very expensive in chemists and you only get 20 tablets in a pack. Wrong food, rushed food, or to much time on an empty stomach plus anxiety = IBS.

    Take some of these out of the equation, you can reduce flare ups to a minimum, but easier said than done in a busy world. it does get less of a problem as you get older, when you start slowing down a bit. But The biggest obstacle these days, from the eighties When I first started with mine, is the awful stuff put in to supermarket meals. Avoid frozen battered stuff, onion rings,Onion Bahjis, frozen Currys, Toad in the Holes (batter again) even fresh M&S top range Korma upsets me, Thats why I get mine from our local takeaway, (chinese) being going 4 years now, Freshly done chinese never had a problem with, but wouldnt buy indian. Fish and chips fresh from Chippie never had a problem, but try remove any soft batter and use a kitchen towel to soak up excess oil. Keep away from processed gravy, like KFC etc, change strong Bisto gravy to a cheap no nonsense brand. Mild coffee once or twice a week, Espresso types will aggravate IBS in most people. Maxwell House powdered cappuccinos or Lattes are ok, use some semi skimmed milk in so its not so strong. best of luck with it, and yep, your not alone, almost 2/10 people now have IBS symptoms to a certain degree.

  • Cheers guys,alot of helpful info to take in.I think the Fodmap diet is worth a try first as its more of a natural way,not a big fan of the drug route as always seem to lead to side effects.It is a horrible condition,although I don't let it stop what I like doing it can take all of fun out of the activity when it really flares up.I tend to get anxiety as a result of needed the loo not the other way round so feel the food route is the first thing to try,I tend to burp alot after eating certain foods too,I avoid onions and coffee as these react with my stomach instantly and rarely drink alcohol either.Good luck to you all and thanks again for the advice 😊

  • I have had IBS/C. I have tried everything out there. Medications, Hypnosis, Cognitive Behavior Therapy, Fod-Map diet. Nothing seems to stork for me. I just had a Laparoscopy and they found that I have adhesions on both sides of my colon. I hope you find some relief.

  • What's been done about the adhesions Jenny,were these causing your symptoms from the beginning?

  • My OB/GYN who did the Laproscopy said he doesn't know if this is the cause of my constant pain. He is sending me to a Colon/Rectal surgeon. I will keep everyone posted.

  • FODMAPS was great for identifying many of my triggers. It's tough to follow the elimination diet but so worth it. As for those crazy moments when you need to find a washroom immediately and you start to panic, try repeating a mantra over and over in your head. I was initially trying them out for running, but I've employed then when I'm close to having a major bowel issue and need to remain calm. Something like 'this too shall pass, this too shall pass'. It's saved me from a few close calls, as I think once the panic sets in it speeds up your guts even faster.

  • HI

    iv had ibs 20 + years. Have you trieda low dose of AMYTRIPILNE? Stress/anxiety sure makes ibs worse.Im struggling a bit today as i'v to have our 19 year old cat put to sleep this evening.

    Such a gentle and talkative cat been a comfort when iv had ibs as she goes to sleep on my chest when im tring to sleep off a bad attack .



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