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?

Absolutely go back - the anaemia and weight loss should be red flags together with the bowel issues.
It can be so hard to get taken seriously when they don't see the pain & problems you are in every day.
I basically went to the GP and said, I don't think it's normal or sustainable to be in pain everyday.

I had recurrent anaemia, no weight loss but a family history of Crohn's was sufficient for the whole barrage of tests to be ordered. Luckily they all came back clear but as far as I'm aware the only way to diagnose some of these conditions is by them actually looking at your bowel/taking biopsies. At least I hope so as otherwise I could have avoided them and just had an ultrasound!

Yes FODMAP done properly (I recall several weeks of basic meat and boiled potatoes and then introduce one vegetable/dairy item/trigger at a time for a couple of days. The whole process takes months) can be revolutionary but given your already significant weightloss and anaemia, I don't think you should be embarking on such a restrictive diet as it requires without medical supervision.

If you've only been for an ultrasound, it's not good enough.
I'm under investigation for abdominal issues and I was told at my ultrasound - by the sonographer - that ultrasound was only to check reproductive, kidneys and gall bladder and nothing of the bowel can be seen in any detail and separate investigation would be needed.
Go back.

I had ‘IBS’ for 3 years which was finally diagnosed as Crohns and I needed two extensive surgeries due to the delay in treatment - ask for camera down and up to be sure , after having it for 20 years blood tests have never shown inflammation markers but I have needed 8 surgeries and have never been in remission

I don't suppose you've had a SeHCAT scan? I had one recently after suffering for years with terrible IBS D. Had the scan and found out I have severe bile acid malabsorption!

Oh shit, I forgot, Fecal Transplants have saved lives & people from this illness! And I’m pretty sure it’s misdiagnosed infection in many cases @Basilpatch you could have DNA testing if you really want to be sure it’s not infection, NHS let’s 20000 people die from sepsis every year, many more have embedded infections similar to Interstitial Cystitis which is claimed to not be an infection but in 99% of cases, is.

www.mdedge.com/internalmedicine/article/213841/gastroenterology/triple-antibiotic-cure-crohns-disease

Please push again for more investigation. The GP said for years and years that I had IBS. I got very ill indeed and after more investigation I was diagnosed with Crohn's. Not generalising but my GP just wanted me out of their office and misdiagnosed me for years and years. I was so sick at diagnosis I had to have major surgery and partial bowel removal. Your weight loss is a major red flag and they should refer you to rule out Inflammatory Bowel Diseases etc

@Grapewrath look into Fecal Transplant, it could easily be a bug that is embedded and started making you react after the initial infection, antibiotic combo therapy is used too. The way it’s affected by stress & estrogen in your body, gut bacteria are affected by these factors too

I love how GPS can dismiss people with serious symptoms for years & ruin so many lives, with no consequences, it’s disgusting. Healthcare in this country is dire, complete lottery on your local GP practice.

More practically though, the things that help calm my dodgy bowel are intermittent fasting (fasting for 16 hours and eating normally for 8) - this seems to rest my bowel. Severely limiting caffeine (I used to drink so much tea!) because it stimulates the bowel. Working out your food triggers (I have loads but major ones are high fat foods, tomatoes, peppers, spice, salads). I swear by prebiotics and then probiotics. Plenty of sleep. I very rarely drink alcohol. Loads of water and avoiding stress. Easier said than done!

Oh and loperamide (you can buy it over the counter), but only take it when your GP/Consultant says you can otherwise it could mask your symptoms

Agree with everyone else....you need to push for further investigations. And a clear colonoscopy is not definite proof either.
I had two clear colonoscopies
Clear small bowel mri
Clear CT scans.
Then I was diagnosed with Crohn's disease through a capsule endoscopy.
And my symptoms have been less severe than yours.
Ask your GP for a faecal calprotectin test too. Thai will test for inflammation. If there's inflammation then it isn't IBS. It's not an expensive test so there's no reason to refuse it

I've had a very similar experience of IBS, and all of the tests to rule things out, but never any weight loss. I was virtually housebound for a year due to sudden onset diarrhoea, but told to just crack on because it was just IBS.

Never really figured out common triggers.

The thing which made a huge difference was taking a tea spoon psyllium husk fibre supplement each day. Fibre never occurred to me to (or my GP), but I just happened upon something online and thought I'd give it a go.

May be worth trying fibre in the meantime, but I agree that your weight loss sounds quite alarming. Good luck, I really feel for you.

Although you’re not celiac you might still be gluten sensitive. Try going gluten free for two weeks just to see if this is the case. It made all the difference to me, I went from sloppy bowl habits like yours to once nicely formed poo a day

Thanks very much for all the advice - I really, really appreciate it! Trying to pick up on all the points... I've been anaemic since I had bloods done last year (about this time) and it seems due to low ferritin. I've taken supplements as prescribed ever since as prescribed, but they have literally made NO difference (last time I had a blood test my ferritin levels were still basically non-existent). The GP thinks it is because I am vegetarian, but I have a varied diet and have been vegetarian since I was 10 ... so I am not sure!

Have not had the faecal calptotectin stool test done (I double checked) so not sure... perhaps I do need to push the GP practice for a referral.

@UncomfortableSilence

IBS should only be diagnosed when everything else has been ruled out, the only way to rule everything out is with a colonoscopy.

You need to go back and insist on a referral. I'm really surprised your GP hasn't done this.

Also completely agree. A good friend was fobbed off for two years because he was ‘too young’ for bowel cancer - by the time he was diagnosed, he had stage 3 bowel cancer. After surgery, a colostomy and months of chemo, it’s looking like he might be ok but it so easily could have gone the other way.

@Saltyslug

Although you’re not celiac you might still be gluten sensitive. Try going gluten free for two weeks just to see if this is the case. It made all the difference to me, I went from sloppy bowl habits like yours to once nicely formed poo a day

Thanks! I did do this but no real difference...

And low ferritin is a colorectal cancer marker.

Try psyllium husk in water once a day, keep a food diary.

From my own understanding it’s usually caused by food intolerances. Once I cut out gluten mine completely went away :)

@SilverGlassHare

And low ferritin is a colorectal cancer marker.

Oh God, really? I had no idea...

But my GP hasn't even mentioned cancer and I would've assumed that I was too young... no familial risk, etc.

Hi OP, I am a GP and I agree that you should be urgently investigated further. IBS is common and can be extremely symptomatic and painful. Having loads of diarrhoea by itself wouldn’t make me overly worried although I accept it’s not fun to live with. However that amount of unintentional weight loss is highly unusual with IBS, and I think (especially with anaemia as well) that you need a colonoscopy and biopsies to be sure this is not something more serious like coeliac disease, Crohns/coeliac disease, or even bowel cancer. Bile acid diarrhoea is a possibility too although I think usually less often results in weight loss. You don’t say how old you are but certainly if you are over 40, then weight loss plus abdominal pain should trigger a 2 week wait urgent referral to colorectal for a colonoscopy to rule out a cancer as per NICE guidelines. If you are younger an urgent gastro referral may be more fruitful. If gastro do all the investigations and then decide it is IBS then I would ask to see a dietician for support with a trial of the low FODMAP diet. And maybe try probiotics like Symprove or VSL#3. I think faecal transplants have promise but I believe it’s mainly a research tool in this country at present.

@Kyliealwayshadthebestdisco

Hi OP, I am a GP and I agree that you should be urgently investigated further. IBS is common and can be extremely symptomatic and painful. Having loads of diarrhoea by itself wouldn’t make me overly worried although I accept it’s not fun to live with. However that amount of unintentional weight loss is highly unusual with IBS, and I think (especially with anaemia as well) that you need a colonoscopy and biopsies to be sure this is not something more serious like coeliac disease, Crohns/coeliac disease, or even bowel cancer. Bile acid diarrhoea is a possibility too although I think usually less often results in weight loss. You don’t say how old you are but certainly if you are over 40, then weight loss plus abdominal pain should trigger a 2 week wait urgent referral to colorectal for a colonoscopy to rule out a cancer as per NICE guidelines. If you are younger an urgent gastro referral may be more fruitful. If gastro do all the investigations and then decide it is IBS then I would ask to see a dietician for support with a trial of the low FODMAP diet. And maybe try probiotics like Symprove or VSL#3. I think faecal transplants have promise but I believe it’s mainly a research tool in this country at present.

Thanks so much for this! I am 29, so I guess that's why the GP is not overly concerned re. cancer etc.

Low ferritin is just a marker for low iron. Yes you could have this with a colorectal cancer because of a silent GI bleed of course, but I wouldn’t calll it a colorectal cancer market as such. There are other reasons for low ferritin. OP has said she is vegetarian and most of my vegetarian patients have low ferritin due to low iron dietary intake. Heavy periods can do it too. Don’t panic especially if you are young and have no family history, having said that weight loss and diarrhoea and low iron together at any age should prompt consideration of this as a possible diagnosis even at a younger age.

Have you tried going lactose free?