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.

@Topseyt the blood tests they have done are full blood count, u&e, iron, celiac, liver.

@Eckhart

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.

I also cut out fibre entirely but interestingly that was on the advice of the consultant gastroenterologist. Again it has been life changing, amazing. Things aren’t perfect but I’m not going 10-15 times a day any more!

The consultant also said there is no problem in taking Imodium on an ongoing basis. I don’t take it regularly but I do take it when I have a big event just to be on the safe side.

I did however have a colonoscopy, gastroscopy and have later had a contrast CT . This was all on private health insurance though so they are always happier to suggest the tests when private to be honest.

When you cut out fibre, what do you eat instead?

I get similar and Imodium works for me. Not sure if mines psychological/anxiety related tho but it calms my stomach right down

@Looneytune253 do you find the Imodium helps with the stomach gurgling/wind?

Here are two examples of nhs low fibre diet sheet. The first looks prettier but the second shows how to re-introduce fibre and is more instuctional I'd say.

www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=31373&type=full&servicetype=Inline

studyres.com/doc/7738973/low-fibre-diet---cambridgeshire-and-peterborough-ccg

You start off pretty strict for a week or so and then can gradually introduce bits of fibre until you realise what level of fibre you individually can cope with.

For me the most important thing is avoiding anything wholemeal, limited fruit and veg (no sweetcorn. peas etc) and never ever ever eating popcorn!!!

@lostandfound55 You can google 'low fibre diet'. It's very counter-intuitive, given everything that is drummed into us as being 'healthy'. You can have white bread and suchlike on these diets.

For me, I went keto, so lots of meat and cheese and eggs. And berries. The eating part can be bit tedious, but the other 23 hours a day are a lot less tedious than they used to be! I'm finding out more and more about how you can actually get everything you need from a diet like this (Zoe Harcombe's YouTube videos are helpful - she's highly qualified and breaks down evidence from all the big studies, to make them easier to digest - pun intended)

Even if you don't see it as a long term solution, it could be worth a go for a few days, to help diagnose/rule things out.

Thank you both, I’ll look into it.

@101namesforme @Eckhart one thing I worry about going low fibre is will this make me have more diarreah? My dietician tells me if eat enough fibre then that is why I have loose stools.

Sorry that was meant to say don’t eat enough fibre.

Everybody's different, OP. I listened to the doctors for years and every time I took their advice, I was making it worse without realising. I think potential solutions that only take a short time to experiment with are worth a go - especially if your situation is already rubbish. The only way is up!

Yes you are right. I’ll give it a try and see what happens.

Thanks for the help and thanks @101namesforme that information is really helpful.

This is the impression I get too. You kind of have to do the experiments to find out what's going on.

I really liked the books written by Dr John Hunter:

IBS:

www.amazon.co.uk/Irritable-Bowel-Solutions-essential-treatments/dp/0091917069/ref=sr_1_1?dchild=1&s=books&text=Dr+John+Hunter&tag=mumsnetforu03-21&qid=1601631141&refinements=p_27%3ADr+John+Hunter&sr=1-1

IBD:

www.amazon.co.uk/Inflammatory-Bowel-Disease-essential-controlling-ebook/dp/B007D15XYM/ref=sr_1_4?dchild=1&s=books&text=Dr+John+Hunter&tag=mumsnetforu03-21&qid=1601631141&refinements=p_27%3ADr+John+Hunter&sr=1-4

Food intolerance:

www.amazon.co.uk/Solve-Your-Food-Intolerance-2005-08-01/dp/B01FKT8QM4/ref=sr_1_8?dchild=1&s=books&text=Dr+John+Hunter&tag=mumsnetforu03-21&qid=1601631141&refinements=p_27%3ADr+John+Hunter&sr=1-8

I'm having an especially rubbish time just now but my GP has signed me up for lots of blood tests and calprotectin and helicobacter pylori next week, so that's should be exciting. I'm really hoping it's a virus and that it's gone before the tests come back.

How are you going there OP?

Having said that, his books always start by saying that patients must be referred to gastroenterology first for tests, before doing any food exclusion diets or anything like that. He says that food exclusion diets and other experiements take time, and if there is something serious wrong, then by the time the diets have been tried them precious time has been waster that could have been used to fix the underlying condition.

So it seems as though an immediate referral would be his advice before doing anything else.

[quote lostandfound55]**@101namesforme* @Eckhart* one thing I worry about going low fibre is will this make me have more diarreah? My dietician tells me if eat enough fibre then that is why I have loose stools.[/quote]
When I first was referred for tests to work out why I had so bad diarrhoea, the GP initially said that she thought I may have diverticulosis which is caused by not eating enough fibre (I don't know anything about that, just repeating).

Which is why when the consultant said to go low fibre, it was totally counter intuitive. For me, low fibre has almost stopped the diarrhoea. Not entirely stopped it but the difference is life changing, it means that 90% of the time my ibs is fairly well controlled. When it's not or I have something important then I take imodium on top but that us only every couple of weeks now.

@jsp56 thanks for the links. I have had the stool test for hpylori but not for the calprotectin as at the time I was told the test couldn’t be done due to covid. I hope it is just a bug that you have to.

@101namesforme thank you for the help.

It's strange that it's come on over the last four months for both of us isn't it? I'm not sure how much of it is stress with me as we had a rotten time with covid in the early part of the year and were exhausted from home schooling. I wonder if the whole country is seeing an increase in IBS-type stuff, and the GP trying to work out which people are stress-related and which need referrals. That must be tricky.

@jsp56

When I had the latest colonoscopy (for a separate issue and a few years after the initial one which led to the low fibre diet) the biopsy revealed that I had helicobacter pylori infection. I took two lots of antibiotics and a stool test a few weeks later showed that it had gone, so it is usually a fairly easy thing to get rid of. Since then my iron levels are a lot better and the bowels have settled again.

2 stone weight loss and you are being told to just get on with it?! breathtakingly awful care you are getting.

You definitely need to get microscopic colitis checked for and that can only be done by biopsy so keep pushing for that colonoscopy
www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/microscopic-colitis (see diagnosis tab)

101namesforme that's great that that helped. :-)

p.s. please do not hold back for a second in informing consultant secretary of errors in letter. This is your health, your life, your medical record. Noting no weight loss when you have had a 2 stone weight loss means a major red flag has got lost. Angry for you :-(

time4anothername - I would totally agree with that. I communicate with private consultant's secretaries a lot and they are always nice and happy to have corrections sent.

Also, even looking at it from the point of view of the consultant in the most cynical possible way, if (s)he has made an error and harm results then (s)he would be liable for damages and wouldn't want that either. Definitely good to write and ask for a correction.

Uncontrolled weight loss is the big red flag symptom in this situation and should definitely be noted.

Below are the guidelines that GPs follow when assessing long term diarrhoea:

cks.nice.org.uk/topics/diarrhoea-adults-assessment/management/chronic-diarrhoea-more-than-4-weeks/

(I'm not a medic btw, just done a lot of reading as I've been living with IBS for a long time and it runs in the family.)

I've also found it really helpful to ask for online access to my notes at my GP surgery, which is given quite willingly. It means that after a discussion with my GP I can look back and see what the GP thought I said, and whether the GP thought (s)he said the same as the thing that I thought (s)he said, which is really quite useful to know.

@time4anothername

p.s. please do not hold back for a second in informing consultant secretary of errors in letter. This is your health, your life, your medical record. Noting no weight loss when you have had a 2 stone weight loss means a major red flag has got lost. Angry for you :-(

Absolutely right. If Tesco delivered the wrong food order you’d say something! This is more important and really worth a call and an email. X

@jsp56 I agree it does seem to match with covid and I do wonder at times if it is underlying stress from these strange times.