Self-help group

[JH16]

Hi everyone,

I'm trying to take a different outlook on my IBS at the moment. I know this is something that has no 'cure' and so it is more a matter of adapting. I would like to start a self-help group as the advice from members of this network has been invaluable and I think being able to talk to other people in similar positions is helpful as IBS can make you worried about getting out and about. I'm in the midlands region of the UK and so am wondering whether anyone would be interested in such a group?

I have lots of ideas in addition to the self-help group, for example trying to arrange guest speakers, IBS-friendly days out/events etc.

Please reply if you have any thoughts. Thanks!

[crazy-daisy]

I would love to join a self help group like you describe but I'm afraid I don't live near you! Good luck anyway - I hope you have success in your area.

[Siapa in reply to crazy-daisy]

Hi we are in bath. Where are u? Self help group sounds great even if just to share experience

[Trailrider]

An excellent idea, I have often thought that local GPS practices should initiate IBS self help groups but this may be expecting to much as in my experience GP knowledge of IBS is extremely limited. The fact that you have had the same idea inspires me to at least approach my local GP practice. Good luck.

[Hidden]

I would absolutely like to join a self help group. I think that would improve my life greatly. But where in the midlands are you.

[dipsy14]

Yep, I too would like to join a self help group but not even close to the Midlands. What are your ideas?

[JH16]

Thanks for your replies so far. Is anyone else interested? Gemini, I have replied to you via private message. Dipsy, I've got lots of ideas at the moment that include guest speakers, IBS-friendly social events, regular meetings to share things that have helped each of our IBS symptoms etc. Just trying to see if and where the interest is at the moment before I start anything

[Siapa in reply to JH16]

Hi we are in bath. Keen on your idea

[Matt_Leeds]

Sounds like you've got a lot of fantastic ideas. I run my own self help group for sufferers in Leeds. It takes a bit of work but it is rewarding. Things started of quite small and now numbers are around the 15 mark.

I too have had guest speakers in and I think is on of the best things about the self help group - getting medical professionals along to a small group where sufferers can ask lots of questions.

I think it's also a great place for sufferers to air their views and describe their feelings without feeling stigmatised.

If you need any advice then please don't hesitate to get in touch with me.

Matt

[LCat in reply to Matt_Leeds]

Great that, in spite of the IBS pain, you had the energy to organise this. How useful was it to get Medical Professionals in as speakers, in view of the fact that they know close to nothing about what is IBS, what causes it or how can IBS be cured ?

[Siapa]

There is a cure. Not medical medicine but food intolerance. Still pain killer n loperamide use intermittently when needed are working really well. Recommended by gastro enterologist. It works. Also get a list of food to avoid from nhs dietitian

[JackoI in reply to Siapa]

Any specific pain killer?

As I've heard some aren't good for the gut.

Thanks

[LCat in reply to Siapa]

Yes which painkiller ? You can’t take many NSAIDs like Aspirin nor Ibuprofen and Paracetamol doesn’t help a lot ...

[crazy-daisy]

I would like to start a self help group in Saffron Walden (Essex) area. Anyone interested?!

[brities]

I would love to go to group. I am in North London. I just started a new job in a hospital ward where dieticians come a lot. I spoke to one of them and she runs FODMAP groups. I am doing FODMAP but on my own. I have a referral to a dietician awaiting news on waiting lists etc. She said I am doing the right thing but her group needs a referral from a GI, who in turn needs a referral from a dietician. OMG trying to get support is maddening. Thank goodness for online networks

[LCat in reply to brities]

I’ve also done Fodmap on my own. It’s quite easy to understand.... doesn’t need an expert to explain. The only problem is you have to cook everything yourself, you can’t buy any ready made fodmap products. And eating out in a Restaurant is tough as most meals contain how Fodmap ingredients which are not allowed.

[foxkennedy21]

Yes I'd be up to talking to people and sharing ideas thoughts etc!

[JH16]

Hi everyone, thank you for your feedback. Things have been on a bit of a delay due to considering leaving the area for employment. I am now staying in the Midlands area instead so I am sorry to all of you who are in the North or South! Unfortunately my new job means I will struggle to run an evening self-help group in the evenings. I am considering weekends or how would you all feel about some kind of online chat self-help group if I could work out how to set it up?

Thank you for your offer of help Matt, sounds like you are doing a great job, and thank you for your advice Siapa. I have already tried medication, different food diets under a dietician and a gastro referral and things are still bad.

[LCat in reply to JH16]

Good idea : a self help chat group is not a bad idea as we all live in different areas. I live in Buckinghamshire. Like you I’ve also tried so many things like antibiotics, all sorts of PPIs, all sorts of diets but things are still bad.