To feel like my bowels rule my life :-(

[queenbee67]

I have quite severe IBS. It isn't constant but at least once or month or so I tend to have a bad flare up of IBS-d and it's really starting to affect my life. It can come on suddenly and create an urgent need for a loo quick. Obviously this can cause issues when I'm at work or out shopping or travelling and so on. During covid it was worse as so few public toilets were available.

I'm starting to fear going far in case an attack starts. Sometimes certain foods trigger it but other times it can be utterly random and unpredictable. I don't want to feel trapped or confined in life because of this. Already I've made excuses not to go on hikes with friends as I'm worried about being stuck in the middle of nowhere and an attack starting - I should add the anxiety associated with this is sometimes enough in itself to bring on an episode!

Is it just me? I can't bear talking about in RL to people so end up making excuses and they probably find me really rude :(

Sorry to hear that. Is this something your GP could investigate or place a referral for? Surely it would be good to figure your triggers officially. I’m sure your friends would understand that hiking would be difficult for you, maybe you can go on an outing closer to home/toilets instead

I have ulcerative colitis. You need to be seen by a gastroenterologist.

I should have mentioned I had investigative tests last year including a colonoscopy and nothing untoward showed up.

Could you take Imodium on days when you were having a flare up or days when you had something planned that takes you away from toilets, just in case of a flare up?

I sympathise OP, I don't have ibs but I have times when I very suddenly need to go and have avoided doing stuff if I don't have access to a toilet. I haven't mentioned it to anyone in real life either.

You can be prescribed Imodium every day to stop this happening. Go see a doctor and insist on a referral.

I have endo in my bowel and was misdiagnosed with IBS as the symptoms are so similar. I have exactly the same issue. It's awful isn't it? You have my empathy.

Does the worrying about it make it more likely to happen? I can sympathise as I have similar problems. After years of IBS I now find that as long as I’ve been to the loo properly first thing in the morning I rarely go again. But, previously I was stuck in a cycle of panicking about whether a loo was accessible which would make it more likely I would need to go. It helped me to think about worse case scenario and prepare for it. So, if you are worried about needing to go while on a walk, pack tissues, wet wipes and a plastic bag. Think about what you would do if you had to go in the wilds. I found if I was prepared it never happened. I would not advise taking immodium. It’s a nightmare for IBS. It can really mess with your system.

I have this problem, but much more so when I eat too much processed food, manufactured sweet stuff etc.

I’ve found switching to a much more whole veg, fruit and natural protein diet, has really helped.

I have similar issues and have done since I was 19 - I’m now 40. I have had every single test and tube up and down under the sun but nothing has shown up (beyond the lupus and asthma I’ve always had). I find the anxiety about it all so difficult to cope with, I’m always worried I’m going to be caught short. It’s not ideal but if I know I’m going to have a big day out somewhere then I take a few Cocodamol the day before as it helps to bung me up (!!) and some on the day and it gives me the confidence to feel I’m not suddenly going to have to rush off.

Have you been tested for coeliac disease OP?

I would get tested for any allergies OP. Try doing a food diary and note the reactions. Also note if stress makes it worse. Cut out sugar.
Try a good Probiotic and prebiotics and try taking Glutamine.

Yes worrying about it definitely makes the need to go stronger. I'm anxious in case I need the loo but then that panic makes me need the loo.

I haven't been tested for coeliac no.

I had exactly the same. Was going through at least 1 pack of Imodium a week to be able to work etc. I had lots of tests - all fine. Out of desperation gave up gluten. Was fine within a week and have never looked back, don’t have any problems at all now. Have accidentally had gluten and had all the problems return so figure I’m intolerant and will happily avoid to get rid of the pooping problems.

Look into CBT for IBS

I take preventative immodium when I'm doing something I worry about or if I feel grumbly in the guts. It takes the worry away which makes an attack less likely.
When I get bad attacks it's so painful I feel faint from the pain but the immodium controls it on days out.

I sympathise. I'm 72 and have always wanted to do Jury Service. At last, after all these years I've been called, and I had to ask to be excused because I suffer from IBS, which in my case means diarrhoea that lasts for several hours, with literally no notice. This is on average 5 days a week. Unlike you, though, I do tell people. It makes life easier if people know that you might need to run behind a bush!

I was going to suggest Coeliac disease too - I had similar issues for years, until they got worse a few years ago and I finally made a link to gluten (which I think I had subconsciously cut down anyway). If you want to pursue this, don't stop eating gluten until you've had the necessary tests.

It’s grim op so sorry. I have had similar problem and found symprove probiotic to be miraculous. It might be worth a go for 3 months.. along with looking at experimenting with taking things out of your diet.

It's worth getting some proper advice to manage this, even if you have to go private, as there may be ways to make it better. My son has a similar condition, we have tried to get him into a regular routine using laxatives and timing meals and toilet trips so that he goes properly every morning and then doesn't need to go again during the day. We haven't cracked it yet but just wanted to say that there are things you can try even if you can't cure the underlying condition.

Also I think it would be ok to tell your friends you are anxious about long walks in case you can't get to a loo, there's no need to give them all the details and I think most people would be happy to try and arrange a walk that didn't go too remote.

I have ibs, not officially diagnosed but something I’ve lived with for 25 years+, stress and/or certain foods ( can’t eat onion/garlic or cheese or mushrooms, or too much sugar or fat) cause flare ups - I find codeine helps enormously when nothing else does.

I've had this for years. For me, what has fixed it is intermittent fasting. I've been doing 16:8 for a couple of months and it literally disappeared overnight. I had 4 days off and it came back. I'm back on 16:8!

I also have IBS !
I got so bad that everytime I went out for a meal I had to rush straight home it was terrible I was referred to a specialist who did up the bowel camera and nothing could be seen !! Which was fab ! When he was doing the procedure I explained I’d tried everything including a fodmap diet .
He prescribed me laxido and I was like why would I need this it makes u poo ??
It worked !!!!! Because it kept me regular I was getting back up for ages then urgent need to go ! This has completely stopped !
It’s life changing tbh (this is my experience I know everyone is different but maybe worth a try ) 1 sachet before bed x

I’ve always had similar OP
You would not think it to look at me, healthy happy outgoing late twenties...etc

In my teens they swung between thinking it was IBS or food intolerances. I lost a fair bit of weight and it somewhat improved but I still get an abnormal amount of gas which is painful and embarrassing, and every so often (once a month or so) I have an episode of either upset stomach or simply going a huge amount, despite going every day on the regular.

No idea why I’m like this

I have found flax seeds have changed my life. A tablespoon left overnight in a small amount of water then drank first thing has sorted mine out almost totally (though I still have odd upsets). I now go to the loo regularly every morning and that's it for the day.