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I'm new ... Horrible ibs-d flare up

Winnie16 profile image
22 Replies

Hi all I'm new on this site but have suffered ibs-d for about 20 years. For the last 18months I can't seem to get things under control. I have taken psyillium husk\fybogel for at least 15 years but have noticed it doesn't seem to work for me as much as it used to, so I've stopped! I read an article recently where 3 women with IBS tried 3 different remedies so i am trying. I have just paid for the York test IBS where it tests your blood against 150 food and drink types and you get a report whether you have intollerances. Also I have just started taking silicogel 3x a day only been doing for 24hrs. So far water stools ... I know if I don't take psyillium husk my stools are just water but I feel I need to take for a good week at least to see if gets any better. Has anybody taken/tried these products? Sorry for the long msg

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Winnie16 profile image
Winnie16
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22 Replies

Have you tried following the Fodmap diet...you do the elimination stage until you do not suffer any IBS symptoms and then slowly reintroduce a food. I have been following it for 12 weeks and it is nothing short of a miracle...and I have tried absolutely everything and have spent thousands of pounds. I can't recommend it enough and there is lots of support out there now for Fodmap followers including a brilliant app, Monash, by the university that developed the diet.

Winnie16 profile image
Winnie16 in reply to

Hi Heishy thank you for your reply I have heard lots about fodmap and will prob give it a go. Did you buy a book or go direct from app?

in reply toWinnie16

I actually did both, the Monash app is brilliant for when you are out and I downloaded a kindle Fodmap book. There is a Fodmap Facebook page which is very helpful. The diet looks daunting to start with, but it simply is simple, clean eating and just avoiding things like onion, garlic, apples, fruits with stones etc. I actually eat so much more on this diet as I feel well and have a great appetite now. I think my biggest trigger probably was wheat.

Vallie profile image
Vallie in reply to

I'm always thinking about trying FODMAPs and I have downloaded the Monash App. My main thought is how to replace bread. I personally can't stand the gluten-free stuff. I always take homemade sandwiches to work. I only get 15 mins for lunch, so couldn't chomp through salad in that time. What do others eat at lunch?

in reply toVallie

I have savoury oat cakes and corn thins with ham, cheese etc. Corn tortillas are also a good substitute.

Gluten-free has been developed specifically for people with coeliac disease and therefore usually contains ingredients which are high FODMAP - apple juice being one of them. Also rice flour is as bad for me as wheat.

Starting today, I'm about to have a bash with sourdough wheat bread as Monash gives it a green light, probably sourdough spelt is the best bet, you can buy it in Waitrose.

FODMAPS has totally transformed my life. I used the app which costs just over £6 and worth 100 times the price in terms of benefit. I went gluten and lactose free plus just ate the green traffic signal foods for 8 weeks then added back in foods in groups. Do try it as it seems to help so many people. I now take no meds apArt from very occasional loperamide(Imodium) if I choose to eat something I know affects me!!!! Good luck

bburzycki profile image
bburzycki in reply to

What App?

in reply tobburzycki

Monash university FODMAPS app

bburzycki profile image
bburzycki in reply to

Thanks..

tigerann56 profile image
tigerann56

I too wonder what to replace bread with. I am trying different gluten free breads, but some have lots of seeds and I'm not sure they do me any good. I've had some success with adding linseed (ground and unground) to breakfast cereal. Also I'm trying the fodmap diet and keeping a food diary. Good luck with anything you try.

in reply totigerann56

Gluten-free bread contains ingredients that are given a red light on FODMAPs, e.g. apple juice so it could be that which gives you a problem.

Try savoury oatcakes, corn thins or corn tortillas instead.

Dairy is what causes my symptoms also apples, berry fruits and seeds along with cabbage do not do me any favours - it's just a case of finding out what works best for you without, hopefully, taking any medication

A lot of people swear by the FODMAP diet but I haven't had to try it myself

Good luck

I agree with the others who have suggested the FODMAPs diet to you, it allowed me to sort out most of my trigger foods and has given me great control. The app is about £6 and is available at med.monash.edu.au/cecs/gast...

If you get stuck with it, ask your GP for a referral to an NHS dietitian as they're all trained to advise on it.

Hate to be a wet blanket but in my view those York tests are just snake oil, have a read of this link quackometer.net/blog/2007/1...

An NHS gastrophysiologist also confirmed these views to me saying that if it were possible to pinpoint food intolerances in this way, then the NHS would be using the same methods as it would save the system a fortune in useless medication.

Silicol did absolutely nothing for me. I've got kitchen shelves burgeoning under the weight of all the different miracle IBS cures and remedies and nothing worked until I did FODMAPs and was able to pinpoint that it was mostly the fructans food group causing my problems. I also found that there are a few foods which, although given the green light by Monash, have bad effects for me, but these became obvious once I'd sorted out the main issues. Surprisingly, rice and its derivatives give me as many problems as wheat and that did take me a while to work out.

in reply to

Oh and Rosie,I totally agree with you on the York Test,there's to many people out there cashing in on people's illnesses.

Hi Winnie,I'm a long term sufferer of chronic IBS,you mention it I've tried it,also I've had every test there is to have,and Gastrologist all over the country,and I still have no relief. I've tried Hypnosis and the Fodmap diet,still no relief. People talk about the Fodmap diet being founded in Monarch university,but if your from the UK it's not so easy to change the different sources of foods.

I don't know where I've read it (I'll try and find it) but Professor John Hunter has been to the Monarch university and has made some changes in the diet .

If I can find the paper I'll put it on for all to read. But me personally the Fodmap diet done nothing for me. To all the people it's helped great, but not for everyone.

in reply to

Hi Gemini,

Are your problems not related to food at all?

My GP is of the opinion that the root cause of my IBS is down to a lumbar spine problem and I'm currently waiting for an appointment to see a neurosurgeon. I think there are a lot more causes behind IBS than are ever tested for - mainly due to lack of research.

Rosie

in reply to

Rosie,you may have hit the nail on the head there.

My Gastrologist gave me a phone number for a helpline if I ever needed it,well last week I was in unbearable pain,so I rang and I think I spoke to his clinic Nurse,and after talking with me for about half hour,she said that exact same thing,it could be a nerve in my back that's trapped,she suggested a ct scan but she was going to talk with my GI Dr first then get back to me. But I'm still waiting,but I'll ring back next week. Someone on this site told me to google the Vagus Nerve and because of where most of my pain is,it made a lot of sense.

But for now it's watch this space. Sorry I've ranted on so much,but it's a bit hard to explain in short. But your probably right.

in reply to

Don't worry I'm glad of the rant especially as you may be on to something!

I have an overgrowth of bone and tissue wrapped around my spinal cord at L2 - L4 and it's from these vertebrae that the nerves emerge that control all the organs in the pelvic cavity - which could explain my slow bladder too.

I've got a document published by the University of Kansas about spinal impairment and the digestive/bowel probs that that can cause. If you want me to send it to you, let me have your email address and I'll be glad to do so.

Gillp55 profile image
Gillp55 in reply to

I totally agree with you. It's finding a GP that will look outside the box. I have been referred to a specialist again, after 12years. I don't think it's diet related in my case either. Hopefully the specialist will also look outside the box.

Winnie16 profile image
Winnie16

Thank you everybody for your replies IBS is such an individual thing and getting it right is so bl##dy hard! You think you've got it sorted and then it rears its ugly head again. I longingly look at people when i'm out, eating whatever they want laughing and joking. When I go out for a meal it fills me with dread as I know I will be in and out the loo when I get home!! Fodmap is something I am going to have to do. Thank you again x

in reply toWinnie16

Winnie,I think your right it is Bl##dy hard. Any things worth a try.

As they say one shoe don't fit all.

Helen37 profile image
Helen37

Sadly this warning comes too late for you to save your money, but hopefully will be heeded by others. I am an IBS sufferer. I tried the YORK TEST several years ago. I think it cost me around £100 at that time. An absolute waste of money. Apparently I was intolerant to spinach and cobnuts!! I have never eaten spinach and I don't even know what cobnuts are. I first heard of this company through the recommendation of Dr. Hilary of 'This Morning' TV fame whose photograph appeared on the 'bumph' they sent !!!. My bank account would look a lot better today if I hadn't fallen for so many false claims. But as they well know, living with IBS can be a nightmare, We are in a vulnerable position and as such, we will try

everything and anything that we hope might help us.

On a happier note Do try the FODMAP diet fairly recently adopted by NHS.

Although it does not help everyone, they so far, are having a very high success rate.. Well worth a try ( and won't rob you of your hard earned cash).

Good luck to you.

Helen37

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