Not convinced my ‘diarrhoea attacks’ are IBS. Any ideas?

[DeeDee412]

Hi Everyone,

I have been labelled with IBS for a few years now and I know my own body and can’t help but think there is something else going on.

My doctors keep dismissing anything I suggest and I’m getting tired of the fight.

To explain, I very rarely if ever, suffer from constipation. I wouldn’t say excessive wind is really a big issue.

What I do get is excruciating, and I mean EXCRUCIATING stomach pain shortly followed by extremely violent diarrhoea. These pains never come without ‘D’. They can appear at random, I can be walking happily down the street and then suddenly be attacked by it. I’m currently in a bad week and have had SEVEN attacks like this. My stomach goes brick hard and swollen into a spasm and then it’s just violently ill. (Sorry for TMI but for context it is water)

I also suffer from on and off acid reflux.

I have read up on things like leaky gut, bile acid malabsorption etc and I am convinced that IBS may not be my issue. I rarely meet people who have the same symptoms as me.

For further context, it’s like my body cannot digest properly. When I am ill, I can see whole food in it (sorry!) but usually salad leaves, skin of vegetables, seeds etc.

I am fed up of people saying ‘it’s just pooing’ and it is reaalllyyyy really not! The pain is 100% the worse part (and the fact I could have accidents).

Is anyone else like this or have any suggestions?

[Maureen1958]

I would look into Bile Acid Malabsorption if I were you.

[FRreedman]

Hi, have you had a faeces calprotectin test? What was our reading? IBS, like IBD, doesn't affect two people the same way. You certainly, have something going on, vis a vis undigested food and excruciating pain. I would be inclined to ask my GP for a referral to a GI specialist.

[DeeDee412 in reply to FRreedman]

Hi, I have done stool samples before (unsure if this is the same test?) and they never told me any specifics they just said there was nothing to worry about.

I understand IBS differs from person to person however I also know in myself that something else is probably going on and I can’t stay on immodium for life, so I definitely need to push the doctors to take me seriously.

Worryingly I am already seeing a GI who has been quite dismissive of anything else, but I definitely need to be more assertive and push for further tests. As an example I have never had a colonoscopy which to me seems mad after 4 years of chronic diarrhoea you would think they would check that!

[thehypnotist in reply to DeeDee412]

Hi How are you now? Did you get any proper help finally?

[Ernest2 in reply to FRreedman]

Hi FRreedman,

Any chance you could write a quick post (Start a new item) on the Calprotectin test, for those of us not familiar and what it is used for etc.

Best wishes,

Ernest

[Monkeypuzzler]

Presume you have been tested for Coeliac disease? If not ask for a blood test. I would definitely request a referral as it’s affecting your life so badly. Good luck.

[Monkeypuzzler]

Apols just saw you are already under a GI. My son has seen 5 consultants in 2 years as just gets fobbed off. Fifth one now taking things more seriously and gave a more believable diagnosis. It’s worth saying to your GP you want a second opinion from a different consultant.

[DeeDee412 in reply to Monkeypuzzler]

Thank you !

Yes had the blood test done and all clear. There’s still avenues to explore I just need someone to be on my side and help me find the answers. Takes such an effort to fight it!

[Monkeypuzzler in reply to DeeDee412]

It’s exhausting but persevere as it’s so important to avoid suffering unnecessarily.

[Mkimber1]

Hi, I've had the same symptoms (among other stuff) for 25 years now, (it's actually worsened as I have gotten older) , mine is just IBS-D, cant really eat and hits without warning. Bad flare-ups can last for days, I live on immodium most of the time and unfortunately have found nothing that helps. MD has ruled everything out but do keep pushing for all tests to rule everything out....and try different things with your diet, for ex. my diet contains zero fiber, it makes me worse. I can only really eat soft proteins like chicken and eggs along with white breads and rice. Not exactly healthy but the best I can do. I hope you find more answers

[Ernest2]

Hi Dee,

You already have some good replies to look at. Just my thoughts reading your post:

Please do not worry here on HU about TMI. Only once people and clinicians get over it will the population as a whole make progress in the area we are talking about.

With clinicians the following Bristol scale may be useful to help everyone feel more comfortable with the discussion:

en.wikipedia.org/wiki/Brist...

Now for simple stuff, if you can, then please join the IBSnetwork charity (We need weight of numbers in order not to be dismissed):

theibsnetwork.org/

For stuff beyond that Stuart24 seems (to me) to have done a great writeup here on HU. A lot to read but if you have done all the simple stuff and it doesn't work, there is lots of stuff here (I'm working through it myself).

healthunlocked.com/theibsne...

That write-up may in parts be unique to Stuart24, so in the longer term it would be good to expand it to add all the info we can figure out as patients. Also get the NHS to check it out for any clinical errors we have made.

Now key point: Please do not give up on getting properly checked out by your qualified clinical team. We all have the chance that there just might be something horribly wrong with us that we need to get identified and treated for. Remember lab tests can sometimes be done wrongly. We are all human and have bad days. Keep an open mind until you find solutions.

Just in the short term (whilst the clinicians do their stuff) try chewing your meals for longer, also resting longer after meals before going for a walk (I'm doing the same experiment right now). If no change then try if for longer. Also think about the order you eat stuff in.

Good luck, and please don't give up.

Wishing you well,

Ernest

[Gemmd]

Hi Dee,

I really would push the dr or GI to have a colonoscopy, your symptoms sound similar to how mine started and after lots of being fobbed off with ‘you have ibs’, I was eventually sent for a colonoscopy and was diagnosed with Ulcerative Colitis.

Hope you get some answers!

[DeeDee412 in reply to Gemmd]

Thank you!

I am going to get it done eventually i just need to be referred

[Sunshinefordays31]

Hi DeeDee412, I wondered if you had any updates on your condition? This doesn’t sound too dissimilar to my story (nor do you as a young woman sound too dissimilar to me - I’m 31, experiencing my more severe symptoms since I was 29, and I think it’s played into the reasons why I keep getting fobbed off too).

For background for anyone who’s interested or suffering the same way - I’ve had bloating and excess gas for years but it was never debilitating - however about a year after having my little boy (and, funnily enough, only a few months after my periods returning postpartum) I started getting diarrhoea attacks often - initially I couldn’t see any rhyme or reason to it, so got checked out for all the IBD through blood tests as well as bacterial infections etc which all come back clear. I got referred eventually to my local outpatient gastro dept but have literally got notwhere under a consultant and dietitian - like you’ve experienced, they’ve basically said it needs to be managed through lifestyle changes as they’re insistent it’s probably down to stress (which I disagree with). I did pursue a couple of tests privately which showed I have a real imbalance of good to bad bacteria but couldn’t afford to take that further at the time. I did also eventually get a SIBO test on the nhs, after which I was put on antibiotics as my baseline readings were too high both times I was tested for them to actually be able to do the test. It stopped the diarrhoea for about 6 months (!!!) then recently again it’s returned - and it’s now following a pattern which I can map to the end of my menstrual cycle. So I’m pretty sure postpartum hormonal changes have played a part in it too?

Anyway, I really haven’t got anywhere in the past 2 years and it’s becoming really depressing. I’m having to take days off of work, there are days where all I can do is lie in bed and wait for the flare up to pass, and there’s no clear indicator of what’s triggering it aside from my period…I also haven’t really found anyone on this forum who seems to follow the same type of pattern as me so I’m really interested to hear how everything has gone for you since your post.

Thanks!