How do people with IBS cope with life

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.

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.

@saltwaterandsuncream

what medication do you have? I need it!

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.

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.

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.

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!!

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

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

Thanks very much for this thread, OP. IBS is so debilitating and I envy anyone who doesn't worry about finding toilets, ruining holidays etc. I've just ordered the trial pack of the enterosgel after hearing positive things about it here. Fingers crossed. My IBS is definitely tied to anxiety but hormones as well, possibly progesterone? I rarely had a flare up while pregnant. I always recommend Kefir on the usual IBS threads as I do think it helps and maybe worth a try for people on here. Xx

Oh god I’d been so good lately but today I had to do a presentation in work. The area of the building I do it in has toilets so I always have a bit of a nervous poo first.

I went to go and to my horror they were closed for refurbishment. I had 8 minutes to get to the other side of the site so I dashed across and went to the loo. Great, I thought made it.

Nope, as soon as i got to the presentation room the familiar feeling came and this time I had no time to go. I stood there presenting trying my best and failing to hold it in - anyone with IBS will know that it’s impossible, it’s such a horrible soft consistency (sorry) that you can’t hold it all.

Thankfully due to previous accidents I now wear period pants and I had a pair of chub rub tights over the top.

After 30 minutes I was able to go to the loo but what a mess. It was all contained but the clean up was awful and I had to wrap the period pants in paper and put them in the sanitary bin.

Does anyone know if this will be seen by the people collecting the bin and they will complain? I’m absolutely scared that a memo will go around the business asking people not to do it. There’s many women there but I’m sure I’d still be mortified 🥺

What on earth can I do to stop this? It probably anxiety - I hadn’t got a single twinge to go to the loo before I set foot in that room 😩

I've just finished my first two weeks on Symprove and am a bit astonished at the effect it's had in such a short time. I have been keeping a diary of pain, urgency and stool consistency (I know, gross, but important) and I have had just one episode of urgency, minimal pain and absolutely no loose stools whatsoever. I had to go back and check it again because I couldn't believe it. I haven't been a couple of days without a loose stool in twenty years.

I took my DD to the beach the other day and even though I had my radar key, I didn't think about going once, and was able to go right into the sea with her for a splash and a play. I am usually sat on the beach willing myself not to have an episode.

If it's a placebo, it's a bloody good one! I have two more weeks left of this order and I will definitely be subscribing. It's given me some of my life back already.

That's wonderful news. My DS got me on lactose free milk and gluten free pasta because of his own problems which were exhaustively investigated privately. We're both so much better.

Keep us updated

Just to report back, after 5 days on the fodmap diet I feel amazing! After 2 days it was if I had never had ibs. Going to keep going on the basic fodmap for a week and then start re-introducing a food one at a time, but I may stay off wheat for good.

Thanks. I've bought both. Will try the entersogel intensive treatment too.
Thanks for your replies.

I take it at night. It slows everything down for me. Once the cramps start its too late. I find taking one immodium at night generally keeps me on an even keel unless I'm in a bad flare. Something else I find really helpful is Enterosgel. Really helps with wind and bloating as well as the diarrhoea. The biggest drawback though is the price which is a shame and it's not available on prescription.

Au contraire @knittingaddict my very well respected gastroenterologist told me that the night before is exactly when to take it to beat the morning rush

Having said that I wouldn't take it as a preventative, I would take a dose if I was flying or on a long train journey. The thought of not having a loo handy fills me with horror.

Afternoon and evening are the most risky times for me. I almost never have issues in the morning.

It reduces bloating and wind when I use it. Usually all problems related to IBS are gone within 15 to 30 minutes. Sometimes I have to take another tablet if it's particularly bad. This may not work for everyone though.

I never take it as a preventative and I don't think taking it at night and expecting it to work hours later is feasible. I only take it when I start to feel the cramps and bloating that means I'm going to have issues very soon.

Imodium questions:

If I take before bed will it stop the urgent need to empty bowels as soon as my eyes open?

Does taking it increase bloating/wind - as the waste is erm festering?

This. PLEASE consider this. It changed my life too although I have to do it permanently and no reintroductions worked. If you stick with the restrictive diet a while it starts to feel normal and you can eat a lot more nicely than you think, and honestly I can home make so much stuff with buckwheat flour or rice flour if I want bread or pancakes or muffins (although I have to make them all extremely low sugar and ok it's not quite as tasty but it's nice enough). I don't need any medication, I take probiotics, I have no symptoms whatsoever. If I go back for even 1 day of eating anything on the banned list I get every symptom described on this thread. It's amazing.

No, I'm giving it a go on my own out of sheer desperation!

I actually took citalopram for a while because this was getting too much for me. It didn't stop the physical symptoms or my obsessive behaviours around pooping (still had to try to go several times before leaving the house and still occasionally took the odd preemptive immodium) but it did calm my nerves somewhat. I felt stronger and less panicky. As pp said I kind of adopted more of a fuck it attitude and didn't care as much which therefore reduced the panic.

I stopped taking them when I fell pregnant and am wondering if I ought to go back on them. It seems crazy when I don't particularly suffer with anxiety - only around this one issue - but on the other hand it does control my life to some degree. I have a 4 month old baby and don't want to stop having to go out and about with her.

On a side note having a baby is good in one way as I can always say 'oops baby needs changing' as an excuse to get to the loo and I always have wipes on me! But sometimes getting to a loo while out and about can take longer with a buggy (getting in lifts etc).

Yes these can help - as I say "you might still shit yourself but at least you won't care" ! However it is best to get to the root cause of it. It's definitely a chicken and egg situation.

I can’t read every page now but have skimmed through and I’m wondering why nobody has mentioned SSRIs? They completely removed my IBS. They were prescribed for anxiety but removed it and the doctor confirmed that it can be an off licence option for people with IBS. That was about ten years ago so I imagine that there would be more research now.