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?

Have they checked thyroid levels? Hyperthyroidism can lead to weight loss and diarrhoea. You need to push your GP for a second opinion. It is not normal.

Yes at age 29 the chances of this being cancer are really very low (but of course not totally impossible as a PP mentioned, there are always rare exceptional cases). Much more likely to be coeliac disease (the blood test can be a false negative) or Crohns/colitis or something along those lines. But definitely needs investigating further. I’d probably send an urgent non 2ww referral to gastro for you in these circumstances (partly cos the 2ww referrals are literally just to rule out cancer so if they do a colonoscopy and it’s ok they’ll just say great news, not cancer, discharge back to GP - and you’re back to square one). Agree a calprotectin would be useful while waiting to see gastro for tests like colonoscopy/SECHaT scan. But in some areas we haven’t been able to do these during the pandemic as GPs except in very limited circumstances.

Agree about thyroid! I assumed this was checked already for you but if not definitely worth checking this too.

@Kyliealwayshadthebestdisco I’m afraid you’re incorrect re: Fecal Transplant, it is used in the UK as treatment

I’d want a ref to Gastro, and a colonoscopy.

Have they done bloods for inflammation? This is really impacting your life, and it is not your GPS area of expertise - so do insist.

In the meantime try the fudmap diet thing.

I took symprove probiotics for similar although less severe issues and they were a miracle

Tim Spector has done great work in this area. There is a huge and growing body of research so dig into it - but do insist on a referral

Have a look at a website called Badbugs. Google will rewrite it as bedbugs but insist on badbugs.
This describes Blastocystitis which is a little known condition which can produce similar symptoms to IBS.

Thanks for all the tips - and @Kyliealwayshadthebestdisco thanks for sharing your medical advice / opinion too! It seems like the best course of action is to go to the GP and ask about the extra tests (calprotectin, etc.) and possible referral. I am nervous about going back as they've made me feel that I am making a big fuss over nothing! Losing ca a 5th of my body weight just seems quite extreme, and it really has been completely unintentional! My GP suggested to "top up" with protein shakes, which I have been doing, and has at least stopped me from losing any more! But it doesn't really seem like a viable long-term solution.

In the meantime, I'll try some of the strategies suggested in terms of symptom management. I'm a bit funny about loperamide, because while it has reduced the diarrhoea episodes when I've taken it, it gives me a really horrible twisty pain in my stomach...

Quite a few posters have said that blood tests for coeliac can often be unreliable. DD presented with similar symptoms and as the bloods were so borderline, coeliac was dismissed. It was only the fact that her cousin had been diagnosed (in her mid-twenties) that made me even think that might be her issue. But that’s what it was, despite it taking a further year for diagnosis via endoscopy. Your mentioning that protein shakes (I am presuming these are gluten free!) are helping stabilise the weightloss does make me think that might be worth further exploration.

Yes I had it for about 2 years then found something that worked for me and I'm 10 years clear.

@rainpurplerain

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.

Is the two week pathway still happening now? Genuine question as so many have been left to wait.

Bumping this as this is such useful information!

I was diagnosed with IBS and also had another very painful stomach problem involving stomach acid. Went on for years and then I moved ttk Asia and both abruptly stopped. Symtoms started up again when I went back to the UK for a few months! To this day I can't put my finger on what it is that I consume in the UK but not in Asia.

When I look back to when I really suffered from similar (it was awful), it was probably linked to stress. I’d just lost three members of my immediate family, had a baby and was returning to work. It took about 5yrs before I realised that I needed to get it looked into

I've cured mine so it is possible. FODMAP exclusion diet. You have to do it religiously. Both the diet and the reintroduction. I am intolerant to certain fructans. I now avoid those and eat pretty normally

Having said that they shouldn't diagnose IBS without all the tests and that includes a colonoscopy so push for that first.

@BelieveinFairies

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.

Yes you need to push more. Especially as you have weight loss.

The blood coeliac screen isn't 100%, you need a biopsy which can be done when they do the colonoscopy.

See a different GP if you are not getting anywhere.

@BelieveinFairies

Thanks for all the tips - and *@Kyliealwayshadthebestdisco* thanks for sharing your medical advice / opinion too! It seems like the best course of action is to go to the GP and ask about the extra tests (calprotectin, etc.) and possible referral. I am nervous about going back as they've made me feel that I am making a big fuss over nothing! Losing ca a 5th of my body weight just seems quite extreme, and it really has been completely unintentional! My GP suggested to "top up" with protein shakes, which I have been doing, and has at least stopped me from losing any more! But it doesn't really seem like a viable long-term solution.

In the meantime, I'll try some of the strategies suggested in terms of symptom management. I'm a bit funny about loperamide, because while it has reduced the diarrhoea episodes when I've taken it, it gives me a really horrible twisty pain in my stomach...

Please ask to speak to another GP, preferably tomorrow - this one sounds worse every time you give more detail (perhaps they have the typical blasé attitude towards polite young women). Don't worry about being seen as demanding or overly anxious. You are totally justified in asking for a referral, just keep that at the forefront of your mind. To be honest, like pp said, the combination of those symptoms alone is not great and so maybe it's not worth faffing about with stool tests which could waste time.

Or maybe the best thing would be to refer you as a routine priority, then do the stool tests in the meantime and have you bumped up the priority list if they show anything?

OP if it is IBS then Mebeverine will likely help significantly.

Weight loss, d and anaemia is a red flag. You can buy colon health FIT self check kit online to check for faecal blood. But you definitely need to go back to GP urgently.

I'm going to try and make an appointment tomorrow. To be honest, I'm almost thinking about trying to get an appointment with the Out of Hours today, because I'm feeling awful. Woke up with stomach cramps at 5am, and that's been it ever since. It seems to be settling down a bit now, but I'm just fed up with it and I'm so tired...!

Haven't RTFT but if you have tried the doctor route, you may want to try Symprove supplements. I have started taking then recently for stomach issues and they have made a massive difference. I don't have IBS, but I noticed most of the reviews on the website are from people with IBS saying it has been great for them.

Just an idea and I understand there may be lots of cures touted out there and you may not want to waste your money. I just thought I'd mention it in case it helps.

I've said it many times on here, but have you tried kefir? Helped my IBS lots.

IBS and undiagnosed coeliac

It could of course be something else, but the anaemia is another coeliac flag for me, OP. That’s what led to my niece’s diagnosis.

Agree with other posters - try a different GP and push. Women’s health issues are so frequently dismissed by them, when there really is something amiss that can be addressed. DD’s Coeliac symptoms were ‘anxiety’ apparently

I have tried Kefir, but it didn't have any noticeable effect. And I don't really like the taste, so I was loath to continue!

My GP also puts it down to anxiety, and I would admit that the symptoms are now causing me anxiety - but I feel like it has been that way rather than the other way round, if that makes any sense!

I forgot to mention before: I did have "episodes" like this in the past (the first time I would, I think, have been 16 or 17) but they always cleared up of their own accord after a few weeks.

I generally don't get any bloating, etc. It's more just cramps, general discomfort and diarrhoea.

If loperamide causes pain like you describe I would be concerned you have scar tissue or inflammation causing a partial obstruction. That would also explain why you have constant diarrhoea. If it were an obstruction, vegetables are harder for your body to cope with and no amount of dietary tinkering is going to help.

There are so many warning signs of inflammatory bowel disease - anaemia that doesn't respond to treatment is another in your latest posts.