How do people with IBS cope with life

[fedupfrazzled]

I have fairly mild IBS in that it doesn't happen often but when I get a flare up I get urgent diarrhoea that can last a few hours. Although the symptoms aren't pleasant I can cope with them, what gets to me is the unpredictability of it. I would say I'm a bit of a control freak and like to be prepared but when I get a flare up it comes on so quickly and I have no control over my own body. I hate it.

For this reason I have become very selective about where I will go and what I'll do. I've found myself making excuses not to go to places where I can't get to a toilet like recently when a bunch of my old college friends invited me on a hike. I felt gutted to miss out but I couldn't risk an episode happening in a remote place like that. If we go on motorway journeys I have to know the route and where the next stop is. It's getting quite obsessive.

I think the anxiety is actually making my symptoms worse too. I'm constantly thinking about it and then I have to go. I wish I could just get on with life without it being something that's always on my mind. My symptoms aren't even that bad/regular but because I've had one or two near misses it's become a huge fear for me now.

If you suffer from IBS how do you navigate life? Do you just have a 'fuck it' and get on with life attitude? I so wish I could. I even tried CBT for a while but it didn't help.

It's much easier for me since I have been working from home. It was an absolute nightmare of embarrassment in the office.

I'm afraid I do plan days out around the availability of toilets. There's no other way. I have medication but, as you say, it can be totally unpredictable.

I have mild IBS and I know what my triggers are - being cold and stress. I suppose mine is easier to manage as it's usually cramps and gas, but twice last summer I had awful diarrhea. I found I could control it until I got to somewhere with a loo. And then I was stuck there for some time, sweating and bent over. You say yours is unpredictable but have you tried keeping a diary to see what it might be? The summer attacks I had were, in both cases, a tuna baguette / panini which seems strange so now I'm more cautious. That might make you feel less anxious. Good luck.

I have severe IBD and before I got the right medication life was very difficult. Medicine has honestly changed my life.

I have tried to identify any triggers but there is no rhyme or reason to it that I can see. I suspect it might be hormonal rather than dietary. Some things do make it worse (alcohol and fatty food) but I think that's pretty standard for most people.

I just want to be like my friends who can jump in the car and head off to wherever not giving a second thought to when, how or if they'll need a loo. It's draining and starting to control my life.

Can you tell us what you have cut out of your diet, if anything?

I have gone dairy free and now gluten but still feel so so bloated after eating practically anything. Do I have IBS or is it allergies? Can a doctor diagnose or is it trial and error?

Sorry for all the questions but like OP I am sick to death of basing all my lifestyle decisions on how close a toilet is and don't get me started on staying over at a new mans. :(

Menopause has changed mine from IBS-D to IBS-C. But before, if we had a day out planned, I wouldn’t eat the day before, or while we were out. Going anywhere without plenty of toilets was a no-no. I also sucked extra strength Pepto Bismal right out of the bottle at the first twinge of an upset stomach.

I need to be near toilet. Coming out of lockdown was hell as every toilet was closed. Only way I can cope with no toilet is not to eat or drink as I know then an episode wont happen. It's awful

I get up very early and eat a small breakfast (yoghurt and muesli). Then hopefully go to the loo. If nothing happens I take an Imodium. This usually enables me to go out for a walk, shopping etc without needing the loo. However, I still plan any journey around loo stops. And I don't eat while I'm out in case it triggers my bowel.

My IBS is more pain and bloating but toilet issues as an added bonus 😒
Since I was prescribed amitriptyline 3 years ago life has become so much more manageable. I still have bad days and food and drink that I'll never touch again to avoid the after effects but it can get better.
Have you spoken to your GP about it?

I need extra time in the mornings to use the toilet a couple of times. I cannot just eat breakfast and go to work.
I have to keep active so my stomach doesn't bloat. Wouldn't consider doing better at work as it would mean meetings and sitting down for longer.
If I'm out for the day I try not to eat too much.

I can so relate to this nightmare

I've a few things IBS part of it and to be honest I either make sure I'm near a loo... Train travel not bus etc.
Luckily our family's days out. Are things like cou try walks so that makes it easier

I was diagnosed with chrons when I was 20. I’m now 44. It’s no longer as bad as it was but I have built an encyclopaedic knowledge of public toilets. I also charge into cafes etc and just ask to use the loo. I buy something on the way out if need be. I do not eat in the morning until safely at work. I would always drive myself somewhere if possible, that way I can divert if necessary. I occasionally do have accidents, but only minor. A small leak etc. Its just my life. It’s not ideal but it’s the only one I have. I also speak openly about what’s happening so people understand. You have my sympathies. I don’t think anyone can understand unless they’ve been there. ❤️

I’ve suffered with “urgent” ibs since I was about 19. I’m now 41. It started on holiday in Greece, I was playing table tennis with my boyfriend and my tummy tumbled and suddenly I thought omg I’m going to poop myself and I literally had to run to our apartment…! Since then - over 20 years now- I’ve had every single test and tube up and down me known to man - and yes I’ve got lots of autoimmune issues (Addisons, lupus etc) but no
reason as to why every month or so I will suddenly HAVE to run to the toilet with next to no warning. It’s insane.

I do try not to let it limit my life too much. When I was younger I spent years avoiding things and googling the nearest toilet everywhere but I’ve come to realise I can’t live like that. I still wouldn’t go on a remote hike (!) but I take a Cocodamol 30/500 if I’m going to have a busy day - my
Gp prescribes them for me thankfully as the Codeine slows down my bowel and they also help my lupus, and I just pray for the best!

I’ve had a few very near misses (!) but thankfully no public accidents.

I do also have a radar key - you can buy them from eBay - so in an emergency I could use a disabled toilet and I find that comforting.

It is a really horrible condition to have.

Just wrote a really detailed post and lost it, gah.

Long story short: Have a look into the low FODMAP diet - the complete low FODMAP diet book by Sue Shepherd is excellent. OP, I would recommend this too.

You may well find you are intolerant to a small subsection of the FODMAPs and it's totally life changing.

OP, in addition to that I'd recommend getting yourself some medication (e.g. mebeverine, buscopan) prescribed by the GP and take it religiously. Should help your symptoms settle and help your anxiety. You can also buy loperamide off the internet very inexpensively which can be a lifesaver.

Finally, buy a radar key - 99% of the time I don't need it, but the 1% I do it's a lifesaver. They're a few pounds on Amazon.

Yeah I have quite bad IBS and just been diagnosed with diverticular disease too. When it first kicked off about 15 years ago I did let it rule my life but now I think fuck it, I'll cope whatever. Don't get me wrong I know where all the toilets are, always have tissues/wipes on me and have had a few close calls, but I'd go on the hike if that's what I wanted to do.

Mine is more stomach pain and awful trapped wind symptoms. I can't wear anything that does up or sits across my tummy as it gives me awful tummy pain and have to buy clothes like mom jeans or leggings in a size too big which is always a faff as they start to slip down. I've tried a lot of elasticated waist clothes and even in those I have to size up too 🤷‍♀️ I often wear baggy shorts, leggings or floaty dresses so nothing is on my belly. Thank goodness cycling shorts and oversized t-shirts made a come back and I can roll legging waistbands down to my hips so they aren't across my tummy.

Fortunately mine doesn't cause too many bowel problems except gas but if I was to wear clothing on my belly for a little while, I'd get crippling stomach pains like trapped wind. I get awful bloating too which is worse in some situations, for example I can guarantee I'll get bloating and tummy pain on a night out (regardless of floaty clothing) but if I eat out in my own house there is no issue? I think I get a bit anxious about the tummy pain before it starts and that probably doesn't help either.

Add in incontinence from DCs and I'm a walking mess 🤣🤣

When down the functional medicine route: with a qualified doctor who is additionally a qualified FM doctor, rather than a 'practitioner'. Had my gut biome done which shed a huge amount of light on the causes of my IBS. It's expensive but worth every penny. It has changed my life.

It's crazy to see how life limiting this is for so many people.

I really feel like a lot of my issues are as much mental as physical, possibly more so. I worry so much that I end up making myself need to go when i probably would have been ok if I hadn't been constantly thinking about it.

That said, there clearly are some physical issues too but I've had colonoscopies which have never revealed anything. I really don't think I have it that bad compared to some people but it's just the fear of an accident that keeps me so bloody uptight about it all.

I take loperimide in the morning if I'm doing a 'big day out' and I think there's any chance of issues. I haven't always remembered, and have, on occasion, had to go for a wild poo - never great. If I remember, it does help head things off.

There are careers I couldn't consider (teaching, for example), but I have quite a few friends with a range of long term conditions, so I'm aware I'm not alone. That doesn't make it fun though.

I used to have terrible IBS (weirdly disappeared after IVF/having children) and remember the poo anxiety clearly.

My way of coping was to take two Immodium on the morning of any day out, then keep a packet with me to top up if needed. Spare pants and wipes in the car. Live in a village so only use public transport heading up to London, so would find a seat next to a loo on the train.

The worst part was my job - a primary school teacher. I couldn’t just leave my class to dash to the loo, so had to make sure all members of staff knew about my IBS and understood that I might need to pin my classroom door open and ask the teacher next door to supervise at no notice. Oddly, not a single child I taught ever questioned these occurrences!

I’ve also heard that codeine is great for slowing down the bowels. One of my sisters gets prescribed medication to regulate her IBS, but it’s much worse than mine ever was (her year out travelling was a challenge by all accounts!)

I was diagnosed with IBS when I was about 13 and suffered mainly with severe bloating until about 2 years ago. I was diagnosed with hypothyroidism and started to take thyroxine, since then my 'ibs' isn't really a thing anymore 😊

I don't have IBS but I have problems with my digestive system that were diagnosed just before lockdown and coming "out" of lockdown has been nightmarish. The anxiety of not being near a loo is dreadful. Sympathies to all XX

I suffer with IBS and I'm never without loperamide. A pack a day sometimes. If I didn't, I'd probably struggle to function with life tbh! Anxiety about it definitely makes it worse.

I had it very badly (loperamide, carrying a RADAR key, the works) and managed to clear it up by cutting out certain foods, taking a special antibiotic to resolve SIBO, and then taking a specific probiotic religiously every day since. It's changed my life.