To ask if IBS can be "cured"?

[BelieveinFairies]

I've had this going on for a year now, and I'm so fed up of it! I've lost a load of weight and (sorry for excessive information) have diarrhoea aaaalllllll the time. I've even had "accidents", it's just grim and embarrassing too!

It's definitely IBS (my GP says) as they've checked for bacterial things and everything was clear. There's also no sign of anything properly nasty. So I've done all that has been recommended - dietary changes, cutting out things one at a time to "test" if it makes any difference. But I'm struggling to identify any obvious trigger and it's basically just been about managing symptoms. Every day. For over a year. And I'm fed up!

Being realistic: is there any chance to "fix" this, or do I just have to accept that this is how it is, and find ways of managing better?

I was similar I had a doctor who just did not believe me- I lost 25 Kgs (gp thought I was exaggerating my weight loss).

Got sicker and sicker and one day when I was scared I was going to collapse I took myself into A and E and was admitted with severe dehydration and they said why have you not sought medical help before.

I was in hospital for 3 weeks.

I had to work part time for the next 9 months as took me so long to get better.

It was coeliac disease but that took another 4 months to diagnose.

Get all the tests you can OP.

Oh and the reason I got tests is I went to another GP (after being in hospital) who put me on the 2 week pathway for bowel cancer. That meant that all the tests were looked at.

Proper clean eating paleo diet cited mine

*cured mine! Bloody autocorrect

I urge you passionately to investigate the FODMAPs diet. It changed my life. It's not cutting out one thing at a time - pretty useless if you're triggered by more than one thing, you won't notice a difference if you're still eating the others! You do a comprehensive elimination for a long time (took over three weeks for my system to "clear out" residual traces, then I woke up one day feeling amazing) then reintroduce one at a time. I found onion, garlic and milk to be my triggers. Completely changed my life, highly recommended. But it's been hijacked online into some weird weight loss/lifestyle thing. You've got to find the medical guidance - University of Melbourne, I think? I did it in a group with my local hospital and got lots of helpful advice about the nitty gritty of foods. Your GP may be able to point you to somewhere.

That said, I did have a colonoscopy first, so it was clear it wasn't anything physically wrong with my bowels.

I had something very similar, but it cleared in 6 months. It was triggered by a virus that cause a short lived fever but no major bowel symptoms. I took lots of those pre and pro biotics and eventually it cleared. It was a real nightmare and I had accidents too. Try to find a way to put good bacteria back into your gut

I lost half a stone too. My diarrhoea wasn't as bad just twice a day, but I also did not want to eat because of the awful effect eating had in my bowels.

Thanks for all the replies! I really appreciate all the advice and suggestions. They have checked Coeliac and C-diff, and both were negative. So, I guess it's okay in that regard!

My GP says there's no indicators to refer for a collnoscopy - since all my bloods were normal except for being anaemic. But maybe I should push more?

The weight loss... I was around 53kg last year and now I'm just over 41kg. It seems like quite a lot to lose - but the GP seems not to be concerned, anyway.

That's a very significant unintentional weight loss. It's not at all sustainable.
I would definitely go back to the GP.

OP with anaemia, weight loss and this kind of change in bowel habit, your GP is being really neglectful not to refer you! You might not get an urgent appointment for the colonoscopy (i.e. what blatant cancer markers woukd trigger) but at least you'll be on the waiting list. Please try to go back, stand up for yourself and ask them to reconsider. I presume they haven't even asked you to do FIT or faecal calprotectin tests to check for blood and inflammation? I don't mean to worry you - the cause is most likely to be something easily treatable, but even then something like IBD isn't something you can ignore. In any case, as pp said, it's shameful that the GP let you go home without sorting out a plan to investigate the weight loss.

(Also, blood tests for coeliac disease aren't really reliable, I've been told, as antibodies will only show if you've been eating a lot of gluten for weeks before the test or if you have the kind of CD which produces antibodies at all).

Sorry to be vague - I mean reconsider in the sense of asking them run further tests or to refer you for a colonoscopy.
There has been no shortage of stories in the news about uninformed GPs fobbing people off with gastro issues who then turn out to need treatment for whatever it is. That includes young people in their 20s and 30s.

I too have bile acid malabsorption. My record is 24 poos in a day but before diagnosis even when it settled a little I was still going 10 x per day. Difficult if your GP isn't listening but I really feel like you should be having more tests if it is persistently still ongoing and they haven't done many tests.

Please insist on further investigations. This is not right. I had a friend with similar symptoms and she ended up having emergency surgery. It was diverticulitis.

I'm sorry OP but after your latest update I think your GP is being piss poor here.

You have two red flag symptoms, unexplained weight loss and persistent change in bowel habits coupled with the fact your bloods showed you are anemic. Are they going to investigate the cause of the anemia?

Honestly I don't want to frighten you as there are other things this could be but you need a colonoscopy, go back and insist.

Your GP is negligent to "diagnose" IBS without a colonoscopy.

It is a diagnosis of exclusion, and inflammatory bowel disease (e.g. Ulcerative colitis) and other things cannot be excluded without colonoscopy and possibly a small bowel MRI with contrast as colonoscopy only looks at large bowel whereas your symptoms could be caused by inflammation, scar tissue, fistulas, etc in your small bowel.

I am not aware that an ultrasound can detect scar tissue, fistula etc. It certainly can't diagnose or exclude inflammatory bowel disease.

Unintentional weight loss of >5% bodyweight in 6 months requires medical investigation. Your GP is also negligent to dismiss that.

Continuous symptoms and weight loss are more indicative of inflammatory bowel disease or something else that can be diagnosed and treated.

Anaemia also goes with IBD.

Don’t give up until you’ve had a colonoscopy, my GP kept telling me my markers weren’t up enough to have anything serious.

I eventually got referred by a private GP (through work) and the colonoscopy showed I had Crohn’s disease.

IBD, inflammatory bowel disease.

That's an awful lot of weight to lose by accident! I wonder if asking for a referral to a gastroenterologist would be a more fruitful path for you to go down.

I can't eat onion and garlic - have you seen the fodmaps research? Onion and garlic are very common cause and are in bloomin' everything. I find Kefir helps a bit though (depends if you can tolerate dairy). I would go back and get it further investigated though before you accept IBS as a diagnosis as that is a huge amount of weight for you to lose.

Your GP should refer you ASAP. I have ibs and my dr told me if my bloods came back with low iron I’d need a colonoscopy ASAP.
I had ibs horrfically following a horrible stomach bug. Mebeverine didn’t work, nor did low fodmap or gluten free. When I’m in a flare anything sets it off but during my good times I can eat anything.
Mine also seems linked to my cycle and having my mirena removed has made a positive difference. Overall for me, it’s got better slowly over a couple of years and I have fewer flares- I can usually control these with buscopan, enterosgel or Imodium. It’s definitely stress related too

Definitely get a colonoscopy with that weight loss. If you have insurance could you go privately to speed up? Or just ask to see a different GP for a second opinion. Good luck. My IBS is long term - have had every test to rule other things out, although it took a lot of trips to the GP over the years. But I never had weight loss to that degree. Wishing you well

@valadon68

OP with anaemia, weight loss and this kind of change in bowel habit, your GP is being really neglectful not to refer you! You might not get an urgent appointment for the colonoscopy (i.e. what blatant cancer markers woukd trigger) but at least you'll be on the waiting list. Please try to go back, stand up for yourself and ask them to reconsider. I presume they haven't even asked you to do FIT or faecal calprotectin tests to check for blood and inflammation? I don't mean to worry you - the cause is most likely to be something easily treatable, but even then something like IBD isn't something you can ignore. In any case, as pp said, it's shameful that the GP let you go home without sorting out a plan to investigate the weight loss.

(Also, blood tests for coeliac disease aren't really reliable, I've been told, as antibodies will only show if you've been eating a lot of gluten for weeks before the test or if you have the kind of CD which produces antibodies at all).

Completely agree, although I think OP would trigger the two-week pathway, her symptoms, and I have no wish to scare you OP, are highly significant towards a bowel cancer dx.

Mebeverine will help with the bowel cramps, you can buy it over-the-counter at any pharmacy.

To be honest, with your symptoms, I'd consider turning up at A&E.

That weight loss sounds excessive - I'd have loved for that to happen when I had IBS tbh, but it didn't - and I too was having constant diarrhoeah/accidents. Really push for investigations. With that amount of weight loss it's really concerning that your GP is not investigating, and has not asked you any questions about if you have an eating disorder. Not nice, but it's a sign the GP is not on the ball.

What cured mine was a combo of visceral manipulation (the Barral type), excluding wheat and dairy, CBT, and relaxation techniques. It's still triggered if I have too much wheat/dairy/Quorn,/general rich food, or if I am stressed - but it lasts days, not months.

But your GP seems problematic