How do you manage IBS? It is ruining my life :(

[Rainbowwww]

I have never had issues before. I do have anxiety and it has been quite bad due to stress at work. I'm having constant pains, cramping and urgency. I've had all the tests the gp can do but am being referred for a Colonoscopy. The pains are all in the left hand side, so the gp is suspecting ibs/diverticulitis. I'm so scared to eat now. Due to my anxiety, I hate going to the toilet anywhere but home. Please tell me how you manage yours. The other day at work all I ate was an apple as I was terrified I might need the toilet. I know this isn't right and my anxiety is feeding it but what do I do? I'd really appreciate any tips. I'm on Mebeverive too. Thank you X

Have you changed your diet ? Given up meat and dairy ? Try eliminating triggers ?
I believe these issues are caused by something we invest so you need to work out what that is .

Meat is rotting flesh so it's always going to have an effect on some people going through their system .

Thanks Gunners, I'm a vegetarian and have been for years, thankfully :) I haven't changed my diet at all. I do think I eat well but who knows? I will keep a diary.

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If it's IBD (not IBS) then for both of the two main IBD conditions the things to avoid are emulsifiers, maltodextrin and gums like carrageenan. These are in many many convenience foods such as ordinary bread, ice cream, cakes, pastries, biscuits etc. Instant gravy has maltodextrin as its main ingredient!

To achieve remission a higher fibre diet is recommended , but when in a flare many people find a low residue diet is more comfortable. This is easy to digest foods such as white rice, white bread, mashed potatoes...but buy artisan or French bread to avoid the bloody emulsifiers and use bisto original gravy powder which has a wheat base instead of maltodextrin.

You may turn out to be coeliac though that doesn't so often present with pain and urgency as main symptoms according to my gastroenterologist. In which case you mustn't cut out wheat before your scopes so this advice will still be ok

You might also want to switch to lactose free milk.

Keep a food diary to see if you can identify any triggers. Stress makes it worse also, as.does not eating enough. You could also try peppermint - my DP has Colperamide on prescription but you can buy them etc in Tesco. Fruit and vegetable skins aren't great for DP either.

You need to find a way of managing the anxiety - at least to a level that you can use a toilet at work or outside the house. IBS aside, denying yourself use of a toilet for many hours is not healthy.
I am fortunate to have no bowel issues but if I needed the toilet, was in pain, and only ate one apple this would give me pain and discomfort.
possible options:
refer to IAPT/CBT.
in the short term what can make you more comfortable accessing a toilet? Can you go home part way through day? Can you find a loo at work that is more ‘private’ or well ventilated?

Sorry the link wasn't very good.

Low FODMAP diet helped me a lot. You can google it (start with the Monash University site).

Also if not already in a routine then perhaps try this, for example breakfast and a hot drink or two at home half an hour before you leave and try to use the loo before then?

My niece had ulceritive colitis and was specifically told to avoid apples/apple sauce and a few other fruits and veg. Google will help you find which foods are commonly associated with ibs flare ups.

Protein from low fat meat is actually digested easier and doesn't ferment in the gut so advising a plant based diet soley for ibs symptoms is bad advice. Obviously if you want to be plant based that is ok, but ibs will restrict your diet more.

You have my sympathy as I had similar issues. GP prescribed low dose amitrityline - helps with anxiety and stress related headaches but also "helpfully" has constipation as a side effect.

My DH has diverticulitis and had colonoscopy recently which found 4 areas which were all on the left hand side, they give you a diagram to show you, whilst there nurse recommended he eat papaya fruit, can only get fresh ones from Waitrose, he has a small amount in yoghurt. One lasts 4 days. He hasn’t had a flare up since and no pain, but occasional needing the toilet quick, but he can cope with that so long as he’s not in pain.

Definitely keep a food diary and look at ways to manage your stress levels.

The only thing that has helped me is Cocodamol as it slows down the bowel. (I have had ibs since I was 19 - I’m now 41 and have the sudden cramps and urgency to go, literally have mins to get to the toilet)! I was prescribed Cocodamol 30/500 for lupus and found it works wonders for my bowel issues as it bungs me up! Not exactly great long term as it can actually make me constipated which I never ever thought I could ever be but it gives me confidence if I have to be out somewhere. Obviously you might not be able to get the 30/500 prescribed but you can buy the lower dose 8/500 over the counter to try.

Thanks everyone. I've had a fit test done that has come back normal, so fingers crossed it's not ibd (my husband has Crohns) I know I need to get away from fear of using toilets but I just feel so vulnerable doing it. Pathetic I know. I'm going to look at the low fodmap and other dietary triggers. Funnily enough, I was going to ask about Amitriptyline as well.
Problems is I am very constipated so the gp has given me laxatives but I don't take them when I work for obvious reasons:(

I suffer from ibs(d) and diverticulitis. Over several decades of severe ibs(d) virtually every day and diverticula attacks resulting in me passing out on many occasions, necessitating visits to my GP with concussion, frequent colonoscopies and an endoscopy, I found some info online that suggested that a small dose of amitriptyline daily could help with the ibs symptoms. I approached my GP, who was new to the practice and asked whether this was something she would consider prescribing. It’s been nothing short of a miracle, 20mg of amitriptyline each night at bedtime and my symptoms are fairly well managed as far as the ibs is concerned. I would thoroughly recommend at least asking about this. I did go through a short period of feeling really angry that this was never suggested by previous GPS, but now I’m just counting myself lucky that I found the info and my GP was more than willing to prescribe. If only the diverticulitis attacks could be similarly controlled!

Thanks @UtterPiffle I am definitely going to ask. So glad it is helping you :)

I understand op. I suffer with ibs, which is triggered by anxiety. It’s hell. I now carry a bottle of poo pourri with me, and it’s been a game changer. If I really need to go when I’m out, then I don’t feel so awkward about it. I actually rarely need it, but it helps my anxiety knowing I’ve got it. Anxiety is so debilitating, and it makes it worse when it triggers these problems too.

I have IBS and lymphocytic colitis, and my gastroenterologist recommended I take cholestagel tablets. Apparently one of the things that causes/worsens IBS symptoms is bile acid reaching the large bowel. Normally it is reabsorbed in the small intestine, but in people with IBS, this may not be happening, so the bile acid reaches the large intestine, causing irritation and inflammation, which causes/exacerbates diarrhoea.

Cholestagel acts as a bile acid binder - it attaches to it and stops it causing the inflammation and diarrhoea.

I’ve been on it for a couple of years now and whilst I still have some symptoms of bloating and diarrhoea, it is a lot better than it used to be.

I have ibd. although its a 'mild' form, I used to experience a lot of embarrassing incidents where I would have to literally run around trying to find a toilet when out, and I'd be really embarrassed if at work. it caused a lot of anxiety.

diet wise I find onions, especially raw ones, flare it a lot. Also garlic to a slightly lesser degree and chilli had cause an almost immediate reaction as it speeds through my system. I avoid these things as much as possible now and its been much better.

If you join crohns and colitis uk you get a radar key to use in public disabled toilets and a card that you can flash in a shop if you need it (to explain the need to use the staff toilet). I find it much less embarrassing in the separate disabled toilets. I've also had to ask to use the staff toilet in a tesco express before after quickly explaining i have a bowel condition. Knowing where the nearest toilet is at all times has helped me a lot.

I think its about changing your diet as much as you can, (i couldn't get to grips with all the restrictions of fodmap), and developing coping mechanisms in the event of a flare.

I hope you find something that helps.

Thanks again for all of your suggestions. I'm only in my 30's, so hoping to get some answers 🙏 I will try all of your suggestions and definitely need to buy some Poo Pourri!!

Buy yourself a RADAR key and use the disabled toilets.

Can I get a radar key for ibs?

Anyone can buy a radar key, they are available on amazon.

But be prepared with your speech for when you get challenged for using it by either store staff or do-gooders.

My niece has resorted to flashing her ileostomy (stoma) bag at them when they don't accept her saying she is entitled to use it and they keep challenging her as she looks healthy enough. She was mortified the first couple of times and even questioned herself if she should really be using them, but has now perfected her responses and if they push it complains to the manager after she has been.

@utterPiffle my GP has suggested amitriptyline for my IBS D but I hae been nervous about the side effects. It is really interesting that you have found it so useful. My IBS D is getting worse and I have to find something that helps. It's reassuring that it has been successful for you, thank you for sharing your experience.

@Lovemydaxie, the only side effect I’ve had has been sleeping more soundly and finding getting up in the mornings more difficult, but comparing that to being on the toilet until the afternoon, it’s nothing! Good luck, I really hope it works as well for you. It has transformed my life and that’s no exaggeration! I’m now re introducing food that I thought was causing the IBS, my diet had become so restricted and I really feel now that I was developing an eating disorder, I was scared of food!