Ibs - feel as though I can’t carry on

[lostandfound55]

Sorry for the long post.

I’ve been struggling for the last few months. GP advises ibs and nothing they can do but I don’t know how to carry on feeling like this.

Everyday I wake up to a gurgling stomach and have to rush to use the bathroom. Then all morning I feel the need to go again sometimes I do go other times I don’t. This means that I never leave the house in the morning as I don’t know whether or not I’ll need to go and to be honest I feel so bad all the time I really only go out twice a week and that is only to go and buy food. I never go anywhere else now.

As the day goes along I then get trapped wind and stomach pain etc which continues until I go to bed then it all starts again the next day for the last 3 months this is continuous with no give up.

Today is bad as I am having diarreah all morning.

Things I have tried:

Gp- prescribed mebeverine - advised classic ibs and I don’t need any other help from them.

Private gastroenterologist - waste of time really as can’t afford the private colonoscopy. They got the details wrong in the letter afterwards such as wrong symptoms written etc.

Dietitian - lowfodmap diet and elimination diet.

I’m still the same after all of this - I don’t know what to do and can’t carry on like this. I want my life back.

Insist on the GP referring you forca colonoscopy if that is what the private doctor is recommending.

The gp told me that they had worked in colorectal a lot and that there was no way I needed a colonoscopy.

The private gastro advised he thought ibs but colonoscopy would rule anything else out.

Gallbladder? I had horrific gallstones and this exact symptom. All morning was spent running to the loo.

Thanks @mintyfreshh how did you get them diagnosed?

It could be SIBO, which needs a specific breath test to diagnose

Drinking kefir massively helps my IBS. I was also prescribed buscopan which helps but I rarely need it now. Hope your symptoms improve. It's a rotten thing x

As far as I was aware, any persistent change in bowel habit NEEDS to be investigated. Your GP doesn't sound very professional to me.

The only thing I can think of is that you're more stressed than normal if it's happened over the past few months, but if I had those symptoms and they weren't letting up - and I couldn't leave the house! - I wouldn't be resting until my GP referred me for investigation.

Is there any chance you can change the GP you see?

Hi sorry to hear you’re having such a difficult time. Have you tried going dairy and soy free? Do you think any of it could be stress related?

Cutting out gluten really helped me and anti anxiety meds.

It’s awful, I really feel for you

It's horrible. I have it. Take Imodium as a preventative, it's fine to do this. My triggers are anything healthy, brown bread is the worst. You need to get on top of the flare and then learn how to manage.

Thanks all. I have cut out gluten, dairy and soy following the dieticians elimination diet.

I will look into kefir thank you.

@LindaEllen I have spoken to 4 different gp’s now and all say the same. No red flags so no need to be referred. I have also lost 2 stone during this time but they advised that was due to not eating enough to prevent diarreah and not a cause for concern. There is 1 other gp practice that I could move to but it is quite further way.

I was stressed in May/June which was just before this all started however now the only stress I have is feeling so bad. Whether that is continuing to make the symptoms bad I’m not sure.

@AriettyHomily my gp advised not to take Imodium but I’m not sure why?

The gp told me that they had worked in colorectal a lot and that there was no way I needed a colonoscopy.

GP is an idiot and negligent.

IBS is a diagnosis of exclusion - it can only be diagnosed once everything else has been ruled out. So cancer, ulcerative colitis, Crohn's disease, strictures, etc etc.

Peppermint oil capsules sometimes help as it is an antispasmodic. Did you just get the ibs symptoms all of a sudden?

You know this isn't normal. Has the GP done any investigation at all? Bloods? Physical examination?

My GP (well 3 of them altogether) failed to refer me for 7 months because it was IBS made worse by stress. When I wouldn't go away they finally sent through a referral to get rid of me and the hospital found stage 3b cancer. GPs apologised profusely and I got referred the first time of asking for everything after that.

In my case the bloods were normal, which is why they didn't take me seriously. I'm 9 years on from that now and no recurrence.

But issues like yours that are preventing you from living a normal life must be investigated.

@user15412486546 that is what I thought which is why I went to the private gastroenterologist, dairy news hoping he could refer me to nhs for colonsocopy but just said about private but it was too much money.

[quote lostandfound55]@AriettyHomily my gp advised not to take Imodium but I’m not sure why?[/quote]
Strange, my GP has always said it's fine to take and has written me prescriptions for it. It really helps.

Avoiding food will make diarrhoea worse by the way because then the only thing passing through your digestive system is water, which will make urgency issues worse. It will also send your digestive system to sleep which again will exacerbate your symptoms.

How sure are you that the pain is trapped wind not a partial obstruction? Obstruction would cause these symptoms, including diarrhoea. And Imodium would obviously make any obstruction worse.

Which is one of many reasons why IBS should never be diagnosed without full investigation.

I would seriously consider a new GP. And don't start by suggesting IBS, start with your symptoms and a diary of the severity.

I had a similar problem accompanied by 'sharting', sorry if tmi. Off sick with stress. No investigation. Finally, a lovely Dr doing a medical for the DWP, I live in France, told me that I really should get it checked. My GP just wrote anxiety/depression on the form, had never offered a referral.

Went back to GP said medecine de travail, they're really powerful - you can't start a job without their say-so, had said I should see a gastro specialist. Referral letter, appointment booked, colonoscopy, found and removed a pre-cancerous polyp, an adenome. That was over 6 years ago. Had another check 2 years later, 5 years later check due next year.

Please go back. I'd had annual poo sample checks as being over 50, but they only sound the alarm when they find blood.

Take care

@Amber0685 I have tried peppermint capsules but they gave me a pain in my stomach. I have had ibs symptoms before but these have just been that I ate something that didn’t agree with me and I had to rush to toilet but no pain, bloating, wind etc.

@ScarletZebra I’m pleased to hear you are doing well now. The gp carried out blood tests to check for cealiac as my dad has this they also did some other blood tests like fbc, iron, liver. The gp hasn’t done a physical exam but the private gastroenterologist felt my stomach and said felt fine.

Press the GP to refer you.
Good luck and hope you feel better soon.

Damn right you need a colonoscopy. So many cases of bowel cancer are diagnosed at stage four because the patient’s symptoms were constantly dismissed as IBS.

The only thing that works for my excruciating IBS symptoms is staying as far as I can get from onions, garlic, fibre (all brown wheat products are out) and most vegetables. Any medicine I've had makes it worse. Limited caffeine and no alcohol.

I can live a mostly pain free life within those rules. It's miserable OP, I feel your pain.

Wouldn't be able to identify strictures or anything else causing a partial obstruction by feeling your stomach.

Even an MRI could miss it if low quality images!

You need a colonoscopy.

It doesn't have to be cancer to be life threatening - an obstruction can also kill someone.

My DH had very similar symptoms (but without the weight loss). His GP did blood tests, 2 different stool tests, and was given a referral to gastroenterology. This was all during covid. The wait for a routine colonoscopy was long due to the backlog, so he went for a private one, but he would have been given one on the NHS at some point. His turned out to be stress related, but the GPs who have seen you cannot categorically say what's wrong, however long they worked in gastro. After all, gastro consultants do colonoscopies as a diagnostic tool, and they work in gastro all the time.