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.

@Neroliandorchid Poor you, what an absolute nighmare!!! No memo will go around.

Crohn’s, not IBS but similar on the urgency. I have had to give up work and can spend days being housebound. I dose with Imodium or codeine if I have to go out. Many, many toilet stops on long journeys. I don’t dare do a country walk or be anywhere with no toilets.
Have you been checked for Bile Acid Malabsorption? It can give very similar symptoms to IBS. It’s fairly common if you have had your gallbladder removed (don’t know if you have) or can happen for no apparent reason

Has anyone ever tried Amytriptyline
for IBS D?

I’ve seen lots of recommendations for it online (meant to be life changing) but my GP wouldn’t give it to me when I asked - wanted to give me Sertraline instead that I refused as side effects for that was diarrhoea!! No way!!

This is the drug of the Devil - even 1/8 of one knocked me out for hours so yes it slows it all down as I sleep for hours and hours and hours.

Well setraline is recommended as an off label answer to IBS so I wouldn't knock it as an option. Lots of drugs have side effects listed which include what they're treating so I wouldn't rule it out on that basis.

Re amitriptyline - I have also been prescribed it before. I think it did make it a bit better but I also need to sleep for over 12 hours a day when I was on it so it was just unfeasible to keep taking it. That was on the lowest possible dose - if it had been prescribed for depression I'd have needed 5 or 10x as much.

I'm on 30mg Amitriptyline nightly for chronic pain, initially I think there might have been some cessation of diarrhoea, but it didn't last long. The most effective things for me are codeine and lots and lots of loperamide.

@saltwaterandsuncream

what medication do you have? I need it!

Earlier this year I had a few weeks like this - going to the loo all the time, sometimes 10 times a day and couldn't go for a run without needing to go, I had to plan my routes around the local pubs or via the town centre where there is a public loo.

Fortunately for me, when the GP referred me to the hospital again (I'd already had a colonoscopy last year for similar but much more short lived symptoms) the nurse recommended Symprove. I'd seen it advertised and then I also read an article where Lisa Snowden said she took it so I tried it and within a week things improved. A few weeks later I had an ultrasound and everything looked healthy. I feel on a bit of a knife edge now (when I go into the office I wait until I get there to have breakfast, for example) but I am 95% better.

Fortunately I generally work from home - I can't imagine being in a job like retail or teaching where you can't go to the loo when you need to! I think mine is probably hormonal - but thank goodness for Symprove. I agree anxiety makes it all worse.

I was already angry about the lack of public loos but now I am even more angry. People shouldn't have to stay at home because they are worried about finding a loo.

Having my gallbladder out has caused a few issues, add in menopause means there's foods I have to be really careful with or preferably avoid. Post menopause friends now have food intolerance so I'm in good company these days.