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.

Just a thought, could you contact the private gastro and ask them to correct all the errors and resend to your GP?

Your GP sounds as if their head is very firmly wedged up their arse, imvho.

DD had the same problem at 17. Can run in families, my late mil may have had cancer when she died, also ibs type problems, advised other family should have checks. Dh, stbxh, has always refused

Just one thing, when you're in the prep phase, even if the diet sheet allows it, don't, just don't drink diet coke. It hurts.

To add, I was thoroughly investigated before figuring out my triggers.

I was referred to gastro, they did a contrast CT as my problems start in my duodenum.

They need to refer you. Insist upon it.

@OperationallySound can I ask how they know his is stress related?

I've got this at the moment. It's been going on for four months. My GP did blood tests, stool tests and I had an ultrasound. All negative. I'm now on the cancer pathway and waiting for a CT with contrast. My pancreas couldn't be seen on the ultrasound, so it's being checked I had a colonoscopy a year ago as I had had a pre-cancerous appendix, so I don't think I'm having another. It's a horrible condition and on Saturday I was just sitting on the sofa and pooed myself as it all ran out of me without warning. You need to push for an urgent referral. GP said she needed to rule out ovarian cancer and various other cancers. Not getting you fully cleared of all these could be seen as negligent.

Thanks for the advice. I will contact my gp again today. I have spoken to a friend today who knew someone with exactly my symptoms and they have been given a colonoscopy within 2 weeks but they are older than me so I am guessing this is why.

If I don’t get anywhere then I think I will have to change doctors practice.

@newtb I do have the secretaries email but I feel a bit awkward emailing to say details wrong but it does say weight has stayed the same and other symptoms incorrectly given.

@perfumeistooexpensive sorry your struggling to. I know what you mean about the poo, sometimes I don’t get much notice. Do you have similar symptoms as myself?

[quote lostandfound55]@OperationallySound can I ask how they know his is stress related?[/quote]
Elimination of other causes really. He also had a contrast CT scan. So basically everything was excluded before coming to that diagnosis. He had suffered two bereavements very close together, and also has depression. The consultant was absolutely great, and he was quite correct, his symptoms are definitely exacerbated when he is stressed or low.

I don't see how a GP could jump to that diagnosis before excluding other diagnoses first, starting with the most serious. The consultant suspected it was stress related at the outset, but it was only when everything else had been ruled out that he was happy to confirm his provisional diagnosis.

@lyra100 thank you I’ll have a look.

I'm struggling with something similar for the last four months but it comes and goes and seemed to start gradually after I gave up rantidine (which was withdrawn on safety grounds in April).

I suppose if something is intermittent then it's more likely to be stress-related, is it?

@jsp56 how often are you getting symptoms?

Hi op, if your dad has celiac disease it extremely likely that's what's going on with you. It doesn't always show on blood tests. Your symptoms sound exactly like celiac. Have you completely avoided even the slightest trace of gluten? How long have you not eaten it for? Try buying new chopping boards, cooking pans & utensils etc

Google bile acid malabsorption. I've just been diagnosed with this after thinking IBS for years.

I had it for two weeks associated with my period in July.

Then next period I had sharp pains in my upper abdomen for 10 days, followed by three days of diarrhoea, then 2 days of no stools, then one day of diarrhoea, then 5 days of perfectly civilised formed stools.

Then one day of diarrhoea happened but by that time I was coming up to the next period so maybe it was the start of the cycle again?

I signed up to the IBS network online and read lots of advice and did nice calming relatings stuff for two days, and now I feel ghastly, as though I had a bug. No drinking or eating for two days.

In fairness I've had diet-controlled stress-related IBS and CFS for 6 years and the lockdown has been very stressful, and then I had to give up rantidine, so it's honestly not suprising that I'm a bit of a mess. I'm just a bit fed up with being a mess after all this time.

I've been seeing a psychologist about 3 times a year for 6 years and that has been really fantastic, and I've learned such a lot about controlling stress and anxiety. Meditation normally stops my symptoms in their tracks after about 15 minutes.

I think giving up the ranitidine was a bit of a seizmic shift though. Oddly, a lot of my anxiety symptoms went away within 24 hours of stopping it, and I had no stomach acid problems or diarrhoea for two months after. #Weird.

IBS gets much worse with me during the winter too and I had a really great winter last year after buying an SAD lamp. Just totally transformed my life. It was great.

Try bimuno from boots or Tesco. It’s a pre biotic sachet. Really helps

Snapple21 - what does bile acid malabsorption feel like? I get these sharp pains im my upper abdomen then a sort of a whoosh feeling as though fluid was pouring rapidly down into my intestines, and then diarrhoea right after that. (sorry TMI).

It used to happen if I forgot to take my rantidine though, so it might just be excess acid.

@Henio I haven’t eaten gluten now for 3 months unless I am eating it without realising. I don’t however use separate utensils etc

I so feel for you OP IBS is just an awful daily grind. I went through a phase of it and by accident I discovered sugar was my trigger, I did a diet called the fast800 and it disappeared after about 4 days. Not suggesting u go on this diet but maybe look at sugar ( which is most carbs) if u haven’t already.
Hope u find answers

Just to add I’ve since reintroduced sugar and while I do still have the odd day it’s very rare

Look up bile acid malabsorption

It causes exactly the symptoms you describe and is often under diagnosed.
It can be a consequence of untreated coeliac disease as well as other things

For me it's frequent diarrhoea, stomach pains, gas and bloating.

I cut out fibre altogether (no fruit/veg/grains) against the advice of my doctor, who repeatedly told me to eat more fibre, which was just making things worse.

I was vastly improved within a few days. Life changing, and so fast. Now I'm working out which fruit and veg I can eat, in small doses, so I can get my vitamins without feeling like I've eaten an inflated balloon.

Perhaps this will help but if not, I hope you get it sorted. It's a bloody nightmare.

Have they done any blood tests at all to rule anything in or out? If not then they should. Particularly things like liver and thyroid function.

I used to have your symptoms. Everything just going straight through me, and losing weight no matter how much I ate. It meant that I hardly dared leave the house.

For me the cause was an overactive thyroid. Too much thyroxin speeds up the metabolism too much so food often races through so the person usually has a rampant appetite but absorbs insufficient nutrients from their food.

My problems are under control with the correct medication now and IBS attacks are much less frequent.

I've found anti-anxiety meds - Sertraline - hugely helpful. A doctor suggested them years ago for IBS but I wasn't happy about taking them so didn't and continued to suffer and live on bland/white food. Then after some bad life events I went on anti-anxiety meds last year for low mood and as an unexpected side effect my stomach has calmed down significantly. Lots of evidence about the brain-gut axis