Help IBS is ruining my life

[Dreamhols]

Post out of desperation of yet another Ibs flare up. I can’t control it, can’t identify any triggers. The flare up happens and it’s pain and huge bloating, im talking 5/10 Inches over my tummy, it’s like pure abdominal distension, like my muscles forget they are even there and my abdomen turns into a water bed.

ive been hospitalised with pain and raised inflammation markers 3 times, all 3 times they thought grumbling appendix. Stool test showed high cal protectin but negative FIT, nhs referral to gastro 2 years so paid private. Colonoscopy and samples were clear. Consultant said sometimes they reset and if not come back for endoscopy but he strongly thought ibs. Gynae issues have been ruled out also. Allergies have been ruled out. I will go back for endoscopy but where my pain isn’t consistent with where the small intestine is.

how the f does anyone manage ibs. I just can’t. Prior to colonoscopy I had a flare up that lasted 6 months, every day in pain, bloated up to 10 Inches and now I’m on day 3 again and I can’t live like this. It’s genuinely ruining my life, it impacts my work being in pain every day, my family life as I can barely play with my kids as bending and hunching over are very painful, can’t have any pressure on my tummy. I’m at the end of my tether. All the nhs guidance I’ve tried, all the buscopan and mebeverine, pepper mint oil, been prescribed lorazepam for it and citalopram and nothing not one thing works. Sometimes fasting gets rid of the pain, sometimes it makes it 10 times worse

has anyone who’s had similar found a way to deal with it?

I have IBD, which I know is different to IBS but this might be worth a go: I have found that it isn't particular food groups that affect me, it's food additives. Particularly the additives in bread products like bagels, cheap bread etc and also any convenience food and drinks shop bought sandwiches/wraps, ready meals, shop made puddings, orange squash, fizzy drinks. I can eat crisps such a aldi hoops that have very little crap in them, but if eat prawn cocktail I notice it. I think it's the maltodextrin, emulsifiers and preservatives etc.

If I eat all these things homemade, or organic, and use good olive oil, ghee and lard to cook, I can eat virtually anything - although whole nuts tend to irritate a flare up.

I blame additives. Try cutting them out and organic whenever you can afford it. I haven't had a flare up in 6 months now since doing it.

Once you have ingested something that triggers your ibs it can take literally WEEKS for it to settle down again, so allow a few weeks to see an improvement if you eliminate a food.

Like many other posters, my flare ups are linked to lactose and can sometimes take 4 weeks to settle down after 2 quality street!

Hopefully you can identify your trigger and feel better soon

Oh I've remembered something a consultant said to me, to get a SIBO test (small intestine bacterial overgrowth) which can be aggravated by probiotics etc. If it's positive it can be treated. Only problem is it's not available on the NHS. (Which is why I have not yet done it).

I’m so sorry, that sounds miserable. A flare up lasting months??!! My last flare up lasted 4 weeks and I got to the point where I was wondering if it was ever going to subside. You poor thing.

My trigger is dairy, I avoid completely and 95% of the time I’m ok. I miss it hugely but not enough to risk another month-long flare up. It’s shit though. And sometimes I’ll have a 2-3 day flare up and I have no idea what has caused it.

You've had a lot more tests than I have, so I have no advice to give, but lots and lots of sympathy and solidarity.

Oh I forgot, I do drink a daily Biomel. It’s a dairy free “yoghurt” drink with lots of live bacteria. It’s supposed to balance out the bacteria in your gut. It seems to keep things ticking over ok for me.

I feel your pain. I had post infectious ibs and it was hell for a couple of years. Awful pain bloating and dihorrea. I followed fod map and it made no difference and I’m already dairy free. I just tried to take the focus off my tummy and live a lower stress life with an overall healthy diet, yoga and walking. No idea if it worked or it was coincidence but I have heard that any changes take at least 6 months before you start to feel better
I do still get flares but mostly they are linked to hormones now so beginning and end of period and ovulation. I take vitex to help with that

The only thing that worked for the pain is amitriptyline for me. I take 20mg daily and all the cramps have gone. I'm still so bloated but find that regular doses of simethicone helps 80% of the bloating.

So I've fixed the pain but the bloating and gas are a problem.

My doctor quite willingly supplied amitriptyline when I asked. I started at 10mg which did nothing, upped to 20mg after 2 weeks and 9 months later its holding.

Sounds bizarre but mine was broccoli (and to a lesser degree milk, though not cheese or other dairy products). Gave both of them up and it has brought mine almost completely under control.

Sorry I know this is slightly old but I've been using Enterosgel the last 2.5 weeks and have found it makes a really big difference. You take it 3 times a day 2 hours after eating. I've been IBS for nearly 20 years (at one point causing agoraphobia) it might not work in the long term - but for now at least I've found it amazing after about 3 days

Are you under a specialist? My husband had to cut out various foods for a month at a time and very quickly, gluten intolerance was identified (in his 60s!) drastic problem stopped almost immediately.

It's the bane of my life. The only thing that helps is what I call my "white diet" - bananas, boiled eggs, rice cakes and low fat natural yoghurt. Eating those foods ensures I don't have diarrhoea. It's that or a shed-load of immodium if I want to leave the house.
I've had all the fun tests, some more than once and it seems it is "just" IBS..... there's nothing just about this condition.

And fasting helps too. It gives my tummy a break.

I feel your pain.

I am in a similar boat here. No obvious triggers because one day it’ll be okay, then for a period of weeks I end up avoiding anything spicy, fatty, or alcohol, or bread to hope or staves it off…

Tested for coeliac and IBD, FIT, all negative. BAM - had liver and gallbladder scan, both fine. Been in increased pain with backache and GP is now sending me for an ultrasound on my ovaries… whilst not listening to the fact that I’m convinced it’s bowel related and it’s a colonoscopy I need, because suspected ovarian cysts aren’t likely to cause daily diarrhoea, bloating, and food intolerances!

I've been following a lax version of FODMAP for about a decade. I tried reintroducing at the start and everything seemed to be a problem, so just stuck with it. If I'm strict with it my tummy isn't too bad but it is restrictive so I'll go off at times knowing it'll cause problems the next day.
Before it I was getting stabbing pains, diarrhea every day, dizziness. I still get them all at times, esp the diarrhea, bur it's a lot more controlled.
I also carry loperamide EVERYWHERE. It goes in my bag in the way my keys do. And I take it preventatively if something is coming up they I can't risk having urgent poo issues on the middle of.

Mine was so horrendous, I ended up missing out on social events and even missed trains due to a flare up at a train station.

GP’s were useless, just suggested the usual stuff which didn’t work.

Only improved when I started studying to be a nutritionist and overhauled my diet. I also saw a herbal medicine specialist which completely changed my life. Sounds like an expensive exaggeration, but it was so worth it.

I completely cut out any foods that weren’t natural or had been processed (bread, pasta, ready meals, cereals, chocolate etc) and focussed on whole foods and lean protein. Also ensured I was eating lots of gut healing fats found in foods like olive oil, oily fish & avocados. I introduced fermented foods such as kefir & sauerkraut starting with a teaspoon at a time and built it up.

Herbs wise:

• chamomile for loose bowel movements and stomach cramps
• peppermint for general bloating & constipation
• Fennel for gas
• Ginger for gas & nausea
• Slippery elm for overall guthealth
• Aloe Vera for helping soothe gut lining

I still occasionally get a flare up, but it lasts a few days and is not even close to the levels of what it used to be like.

If you can afford to see a nutritionist, go for it. They do tests that GP’s don’t bother with.

Just in case it sounded like I really have it under control... I had to jump the barrier for the loos at Green Park today as I didn't have 50p and was about to poo liquid any second. I didn't have the luxury to walk the 5 mins to the Fortnums loos for a free, and much nicer, toilet.

@PinkArt I also take Loperamide preventatively if something big coming up eg bus journey or eating out with friends. I hate that this is my life.

My husband cured his ibs by going vegan and eating the fodmap diet. He was vegan for 8 years and on and off the fodmap when he would have a flare up and then go back on it. Now he completely settled his symptoms and can eat red meat and chocolate and he's all good

I'm like @shrunkenhead below, I can only reliably eat a white diet. I'd love to be vegan for health and moral reasons, but just can't stomach pulses or vegetables! I'm very interested in learning if anyone has discovered a pro (or pre) biotic that works

And also, how does one go about getting a SIBO check if the NHS doesn't test or treat this?

@MonikerBing private gastroenterologist clinics offer them

I eventually got mine under control by eliminating gluten (even marmite), eating a lot less, being very active and not eating late. It did become almost unmanageable in my early 40's so I assume there's a link with menopause.
I still have some maternity leggings in case it ever flares up again.

Nobody has mentioned caffeine - I had to cut out all coffee and tea.
Good quality olive oil can help symptoms - it has to be high quality (I get a bottle that costs about £15 at Waitrose) and you can take a tablespoon a day or when needed.
Research: https://www.sciencedirect.com/science/article/pii/S1542356523005748

Poor thing, I've been there. You need a dietitian and a proper Fodmap diet and reintroducing of foods. It will take months to rest your system and work through what irritates you. Just stopping gluten or diary for a bit won't help. Gluten and lactose are mild problems for me, lots of fruits/veg, caffeine, onions and garlic can cause me real pain. Its worth taking the time to explore slowly.

Monaghan University is one of the best of IBS science and you read up on it www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/?gclid=Cj0KCQjwjt-oBhDKARIsABVRB0ymY8SvuQZT1vYnSMMbIAbXFh0V4feHWxUZOo45jFu0TeE5HHSl31saAvjaEALw_wcB

What frustrates me more than anything is the complete and utter lack of a specific trigger food.

Regardless of what I eat I just always have a bad flair up on average about once every 7-10 days which will then last 24-48 hours, leaving me feeling exhausted, depressed and wiped out and I usually just start to feel I've recovered just in time for the next flare up to occur.

Immodium instants until the symptoms clear up.