Totally debilitating IBS

[awkwardanduncomfortable]

I’m wondering if anybody has any advice or suggestions.

I have suffered from IBS for years; always diarrhoea. It is absolutely ruling my life at the moment.

I have recently been to the GP to ask for referral to a specialist because I am at my wits end and it is making me really depressed.
I’ve had blood tests which have come back normal and my fecal calprotectin is also normal so IBD or anything similar is very unlikely.

I am unable to take my children out for walks etc due to the urgency, I’ve had to go to the toilet in extremely embarrassing places. It prevents me exercising and socialising due to the chances of needed to go urgently etc.
taking 1-2 imodium a day I will still go regularly.
I hate myself for the fact this stops me managing to do things with them 😭

I have recently started taking a course of expensive probiotics, I’ve tried colpermin and buscopan before.

I am really keen to hear from anybody else with severe IBS and any hints or tips that work for you.

Thanks in advance for an uncomfortable subject!

You probably need to push for a SeCHAT scan. A lot of debilitating IBS-D is due to bile acid malabsorption. Would your GP consider trying a course of colestryamine or colesevalam in the mean time?

It's funny you should say that actually @NighghtmareNeighbour because I had completely forgot that I did try that stuff at uni over 10 years ago when I last saw a specialist and it is the only thing that has come close to helping at all, perhaps I need to try it again!
Thank you

I’ve had blood tests which have come back normal and my fecal calprotectin is also normal so IBD or anything similar is very unlikely.

But have you had camera tests - colonoscopy?

IBS is a diagnosis of exclusion, you should not have been told "IBS" without a camera test, it's negligent and could put your life at risk.

What you describe goes way beyond trying to tinker with diet and drugs unsupervised - you need proper medical investigation and support. Blood tests for gut issues are a very, very blunt tool. You need a camera test and biopsies.

For instance, if your symptoms are the result of physical damage such as scar tissue, narrowing of your intestine, strictures etc - all of which could cause the worsening scenario you describe - that would not be apparent from a blood test.

Fodmap diet? It's not nice but only eating a couple of safe foods then very slowly introducing one new food at a time.
Lots of peppermint/fresh mint tea for easing symptoms.

Sorry a quick list of what works for DH. Hope you feel better soon and find out what your triggers are x

Have you done the fodmap diet and found out what your triggers are? Are you intolerant to dairy/wheat?

I second this as I was diagnosed with this recently and the medicine has changed my life. Also had a colonoscopy - all clear.

@cornflakedreams I had a colonoscopy when I was at uni so ten years ago which they had to stop early because it was so painful despite being sedated but what they saw looked ok and I think they took some biopsies which I never heard results of so assume ok!
One of my questions is whether that is worth doing again!

@zeddybrek @Beachbabe1 diet wise it is very hit and miss what triggers me. I am going to give both gluten free and dairy free another go again but think it's best to wait until after I've seen a consultant as I know you need to be eating gluten for the biopsies!
Nothing appears to be a trigger food wise other than a meal itself. I know generally I am better eating small and often, and if it's already bad then heavy greasy foods will make it worse!
Otherwise despite lots of food diaries etc I've not identified any specific triggers!

@SkeletonFight this is super interesting, what type do you take? Definitely something I am going to push to try!

You would need to see a doctor to get that answer but I would say yes as I last had one 10 years ago and they redid. No pain and no awareness of this procedure - drugs have moved on so much. Don't be scared.

Did they not test you for gluten intolerance? Mine came back a no. I am on cholestyramine. Honestly I could have written a book called " I have shat all over the world in the most inappropriate places"😂

This is interesting. I've had an awful night of stomach pain, honestly like I was in labour. I don't think I've ever been tested for Chrons either. I've been taking mebeverine so I could get out of the door yesterday but that made the pain worse after the 3rd one late evening. Waiting for a gp call back. I went 6 times yesterday 🙄

Exactly what happened to me. After years of shitting 10 times a day I finally had some peace.

Worth remembering that the gut is in itself your second brain - it is a very complicated organ that we do not fully comprehend. It is not just a shit conduit!

I feel your pain op.
I have had IBS for 24 years, the last 5 years have been awful. It has truly ruined my life.
I have had endless tests, tried absolutely everything I can to control the symptoms but little helps.
I have just started taking Nortriptyline, it’s the sister drug to Amitriptyline, both help slow the gut down and ‘dry’ everything up. They can be very constipating dugs but personally, I would rather have that any day over diarrhoea.
I will say that when I was younger I had much worse diarrhoea than now and totally giving up dairy did ease it a lot. I am also low fodmap which helps to a degree.
Your GP should be able to refer you to a gastroenterologist so they can double check there is nothing else going on, like BAM etc.
Good luck, I really hope you find something to help, it’s an awful condition which people don’t understand or have much sympathy over but it’s truly awful.

Oh dear unfortunately I can relate, I don’t think I’m as bad as you but things are in a similar ballpark. I can operate normally most days and just take an Imodium if needed or if I suspect I might get caught out. I’ve had every test, stool tests, blood tests, two endoscopies, a colonoscopy with biopsies, a BAM test (was so convinced this would be it!), an MRI etc.
two things I am now trying to get are a SIBO test and one for hypochlorhydria as I took PPIs for years ages ago and have had a few short courses more recently. Also suffering hair loss now. It’s miserable so I know how you feel.
have you been tested for either of those things? Might be worth asking.

I had ibs diagnosed 8 yrs ago with a colonoscopy to rule out other causes.
My ibs has recently been worse and the gp said I needed another colonoscopy. I had it and they found a polyp which was removed. They said it wouldn't have caused symptoms but may have turned nasty in years to come.

Beware giving up dairy! I did this because of my IBS and now have osteoporosis and lots of breaks - take calcium and Vit D if you are avoiding dairy.

I went gluten free which helped immensely
recently got worse again so just had consultant appointments and Have now been advised to reduce fibre, stop taking stomach acid inhibitors, and am being investigated for connective tissue disorders