Life ruled by bowels

[Hollyberry33]

I have mild IBS. I say mild because it doesn't flare up often but when it does I get bad urgency, loose tummy and can't go far from the loo. Sometimes there are food triggers, other times it seems to come from nowhere but it's happened often enough now to make me really anxious (there have been a few occasions where I've had near misses due to a sudden onset and not being close to a loo). Im not taking medication but it really isn't too debilitating in itself.

But because of this I am really selective about where I'll go. Long country walks are a form no which is sad as I used to love hiking and spending time outdoors. Long car journeys also worry me. I'm ok with dh and family but going anywhere with friends scares me in case I have any embarrassing issues. I'm missing out on things and so are my dc. As I said, 80% of the time I'm ok but that 20% has left me with such fear and panic that im restricting my life and only going to places where I feel safe and able to get to a loo quickly and discreetly if I need to. How do other people navigate life with ibs and especially the unpredictability?

I have IBD and IBS, I understand just where you are coming from! I try to wait an hour after eating before going anywhere but have ended up shitting in hedgerows, having accidents etc in emergencies. It does make me anxious but I can't waste my whole life waiting inside by the loo. Live your life and memorise where local loos are is all you can do!

I'm like this with my bladder, so badly i cannot work, its seriously life quality diminishing.

I have colitis, it's truly rubbish.

Probably not great advice but I take Imodium daily. It just makes me feel like I’m safer doing long drives, walks, going into the office etc
I just haven’t really been able to get my GP to ever take it seriously and things like Buscopan don’t do much for me

I sympathise because I didn’t used to go anywhere without having toilet locations mapped out in my head. In my case it was undiagnosed coeliac disease, but it was bloody miserable at best and painfully embarrassing at worst.

Re food triggers, if you haven’t already done a full exclusion diet, it’s probably worth taking the time to do it now because it can make such a difference if you can identify triggers. And if the last time you did one was a couple of years back, it’s probably worth redoing as these things can change over time.

My son has a major FODMAP intolerance that caused him huge issues, but now the whole family eats low FODMAP and it’s made a huge difference to him and also to my husband, who had been struggling through in silence for years because growing up he’d been told he just had to get used to the pain 🙄and even FIL has benefited from this and started to dodge some things after realising he felt better after eating with us because of the substitutions we were making.

We’re finally managing to reintroduce some foods so it’s becoming less restrictive, but it’s honestly been a long time since I had to research where the loos were ahead of a trip out. On the odd occasion where I end up unintentionally eating something that causes me issues, I have a stock of loperamide to tide me over when I go out so that I don’t have to be completely ruled by my bowels, but that’s only ever a short term solution.

If you’ve not already got it, get hold of Prof John Hunter’s Irritable Bowel Solutions and check out exclusion diets. And if you want to try low FODMAP, download the FODMAP app by Monash University as it’s a life saver.

25 years dealing with cronhs so I feel your pain.

My top tip is to buy a potty and largest sized nappies, wipes, nappy bags, toilet roll. Keep in boot of car. In an absolute emergency you line the potty with an open nappy, do your business, bag it and bin it. Put a towel on the seat of the car first and something to cover your lap. Discovered this when potty training DD, found the potty just gave me peace of mind, I've only used it a couple of times but just knowing it's there has lifted a tonne of anxiety.

Try and build your confidence back up. Find a familiar hiking route that has lots of potential toilet spots (eg.through a forest). Always keep wet wipes and tissues with you.

Sadly a lot of us out there are living life with restrictions. It's important to focus on the things you can enjoy and not to dwell on the things you cant.