Coping with unpredictable IBS

[dustydog22]

How do you do it? I get flare ups occasionally. Maybe once or twice a month. Short lived but totally unpredictable and they come on very suddenly without warning. Take yesterday for example, I was on my way out to meet friends and had intense cramps and nausea that came from nowhere. Had to pull into a supermarket and use the loo where I had a really painful, quite huge BM afterwards I was fine and able to carry on my day.

The thing is, if that toilet hadn't been available I would have been in trouble and this sort of scenario is playing on my mind. Next month I'm due to go camping which will include limited facilities, long walks and breaks between toilets. What if I have a flare up then? The fear of it is almost controlling what I do now.

I don't take medication but as I said it's not a constant condition and when I do get a flare up it's short lived and usually solved by going to the toilet. But I'm wondering how others navigate life with IBS? Are you still able to do things that involve being 'stranded' or are you selective about where you go? I've taken to having immodium if I do want to go anywhere remote but that doesn't always work either.

I don’t do things that leave me stranded. I did a couple of years ago but then didn’t drink or eat anything the whole day..fun, right?

I’ve had this since I was 19ish, I’m 42 now. Had all kinds of investigations and tests and I do have autoimmune issues including lupus but the ibs is probably the most debilitating thing. To be honest I plan everything I do around toilets. It’s no life really and I do try and just go with it and think fuck it if it happens it happens (and to be fair I’ve never not managed to make it to a toilet) but it does control my life. I’ve had some success with fybogel - which is odd because it’s mainly a sort of laxative supposedly so you’d think that would be awful but it’s a bulking fibre agent and for me it tends to slow things down and make them more controllable.

I’ve been living with IBS for 20+ years - I don’t take drugs for it now. Also active Walker/hiker and kayak etc.
Few things: keep a diary and figure out what your triggers are - avoid as much as poss when you’re away. Don’t over load stomach when you’re away and eat main meal at the parts of the day when you have the most energy. Drink enough water - alcohol the previous night always meant I had a loose BM the next morning, try and make sure you’ve had a BM before you go out for the day. If you’re quite remote then you can prepare as if you were wild camping. Be prepared to dig a hole and carry out tissue paper in a container for disposal later. If I’ve got a preference I’d always choose to use a carpark with a toilet or close to a cafe for a day out. We now carry an emergency loo in our vehicle (a pop up type). Only had to use it once.

I’ve had IBS for about 25 years but it has got massively better in the past ten years. I would suggest keeping a food diary as I found when I tried eating low carb for weight loss that one of the biggest changes was in my bowels. I went from cramps, pain, urgency to go and loose bowels to almost the opposite (but not constipation). Major flares for me to this day are all breads and pasta, although I seem to be ok with rice and other carbs.

To this day though I don’t like being far from a toilet and would never go hiking etc where there were no toilets. I once did the Three Peaks of Derbyshire hike and spent most of it petrified I would need the toilet.

I used to have Buscopan for flare-ups when I was really uncomfortable.

I’ve also found coffee to send me straight to the toilet within the hour, and it’s known for this so be alert to whether this could affect you and avoid it.

Try avoiding FODMAP foods, it can really make a difference to IBS.

Feel your pain. Last week I was at a friend's and she made me a coffee with milk I've never used before.......I had to go. I was absolutely mortified

I am the same but not diagnosed. Only started this year and tbh wondered if the GO would give me the time of day. Every month (normally every 4/5 weeks ish) I get a sudden onset of diarrhoea that lasts 3/4 hours. Then it’s gone for another 4/5 weeks. Sometimes up to 12 weeks. Can’t find a good link except sweetcorn and seeds, maybe alcohol but I’ve always been fine with that!

I feel your pain. I dont have IBS but the immunotherapy drugs I have to take to prevent secondary breast cancer have exactly the same symptoms. Its the uncertainty of it and the lack of warning that gets to me. It seems that whatever I do is dominated by worries about the state of my bowels. Even worse, my lovely DH, who is so incredibly supportive, knows far more about my digestive system than he should. Its not exactly romantic is it?! I don't gave any advice for you, but you have my sympathy.

I fucking hate IBS. I look 8 months pregnant all the time. I worked out dairy made it worse, but I’ve avoided dairy for the past week and woke up bloated again today. Back to the drawing board. So incredibly frustrating.
I do tend to plan my day around where I’ll be able to go to the toilet. Trying not to be bitter about it. I know lots of people are worse off.