Newly diagnosed, really struggling

[els33]

Has anyone got any advice on telling people about my diagnosis? I'm really struggling to adjust, its a relief to have an answer after months of symptoms but I'm scared about the future and lashing out at my partner when I get a flare up as I feel so alone

Can anyone help? Or have any book recommendations

[BabblingBrooks]

There’s plenty of stuff online to read up on but there’s a book I’m reading now that’s really good called GUT , it’s not specifically about IBS but everything about the physiology of it by a German doctor called Gulia Enders. It provides a good understanding how it all works and gives an insight into how things can go wrong, really well written with lots of humour and funny pictures.

[els33 in reply to BabblingBrooks]

Thank you, I'll take a look

[SingC]

You’re not alone, Els33 - that’s for sure! There’s no pressure to tell other people if you’re unsure about it. It’s your story and you’re in control of who you disclose it to and how. Personally, I just tend to say that I have lactose intolerance and leave it at that unless the person is a really close friend.

The main thing is that you’re getting the help that you need. Is your gp being helpful? Have you tried diet changes? There is the low fodmap diet which is effective in reducing symptoms for the majority of sufferers. There’s also Buscopan and peppermint tablets/capsules. If your IBS is anxiety-related, there are also interventions for that. And you’re always welcome to come on here for any questions you have or just moral support. Wishing you the best!

[els33 in reply to SingC]

Thank you, might try that for telling people, just get stressed about going out etc and then in turn that makes it worse!

My GP has been okay, just it's all so new - I've got buscopan and trying to do food swaps... I've been researching and then scaring/overwelming myself technique - which can't go on as its mostly stress that triggers me I think, thank you for your help

[SingC in reply to els33]

Don’t be scared! You have the diagnosis which is a huge step forward. Now you just need to work the problem, one step at a time. My gp suggested cutting out lactose for 2 weeks, then cutting out fructans for 2 weeks. If your symptoms improve hugely when cutting out one food group, then you categorise that as a trigger and keep it out of your diet in the short term. If your symptoms don’t improve significantly, then you put that food group back in your diet, and try cutting out a different food group. For my part, I saw an enormous improvement from cutting out lactose, but the problem hasn’t gone away entirely, so I’m testing out removing other food groups as well. Wheat-based fructans is next up! Once I know the trigger food groups, I can re-introduce small amounts of different foods in that food group and see what my actual tolerance level is.

Classically on the low fodmap diet, you’re supposed to cut out all possible triggers for 2 weeks, then re-introduce systematically, but that felt just too restrictive to me. I guess you’ll find the method that suits you. Either way, just take it step by step and identify your triggers over the next few months. That will be a huge step forward right there.

In terms of telling people, just know you’re in control and can tell people as much or as little as you’re comfortable with. It’s your story. But, to be clear, there is nothing shameful about having IBS. It’s a medical condition like any other. It’s just involving bodily functions that we don’t normally talk about in polite company. So think about who you want to share that information with and who you don’t. Good luck with it!

[Superzob]

I had a number of health problems, including IBS, and it was affecting my quality of life and really getting me down. I, too, was reluctant to tell people about it and felt guilty when having to cancel arrangements at short notice. I saw someone at the famous Priory Clinic who suggested that I should tell people likely to be affected - she said that people can be quite understanding. So I started to open up about it, and you'd be surprised how understanding people really are.

I wouldn't pretend that all the guilt and frustration has gone, but it has certainly improved.

[tomc]

It is not easy coping with IBD - IBS

I now have an ILR

ILEOSTOMY WHICH HELPS but is a bit of a nuisance But a lot better than the other . all you can do is wake up and try to make the most of your day.

[Rosills1]

You may find the Zoe podcasts useful. Here ia one youtube.com/watch?v=EW-BkdP...(Not working as expected?)

[Flyonawall]

This is a bit overwhelming at first ,it perhaps makes one aware of how narrow most of our diets are.It's harder if your partner does not understand and then you have to eat differently.

Just tell people you have IBS,it's common but most people won't have a clue what it is...

There's plenty of information available...I just went straight on to a fodmap diet(look at Monash Uni guidelines)and stuck to it very strictly, 3 days later symptoms were much reduced.Going full fodmap straight away will help you identify triggers much more clearly and quickly.You will lose weight initially.

Educating yourself about fodmaps etc will empower you and also help you to make healthy food choices.

There's plenty to eat,just not what you're used to....

Be thankful that there are many replacement foods now available which are low fodmap.