I.B.S. treatment- confused

[runrunruuun]

has anyone found steroids helped with I.B.S.?! I was prescribed oral steroids a few weeks ago for a separate condition, and as some kind of beneficial side effect it completely stopped my I.B.S. Honestly, almost overnight the symptoms got noticeably better. After a few days they were miles better and completely gone!

I have had I.B.S. for just under a decade, and I've never found any help for it- I've tried cutting out every single food group imaginable, ive done fodmap, ive tried probiotics, ive tried it all over the years (please dont say I need to do it stricter or try again lol, I was strict and under a dietician and it made absolutely no difference unfortunately).

my symptoms come and go- when it flares up I get awful cramps, diarrhoea, greasy/filmy stool, mucus and just general horrible symptoms like that. occasionally blood but not regularly.

ive had every test imaginable - ive had blood tests, stool tests for everything including calprotectin which have all been fine, ive had endoscopies and sigmoidoscopies and ultrasounds. nothing has ever been found so I was diagnosed with I.B.S. and told to live with it basically

I've tried every single medication- buscopan, loperamide, mebeverine, every I.B.S. medication on the market and that can be prescribed. Nothing has ever made a huge difference when the flare starts. the only thing I can do is fast until my insides settle down, or eat lightly/blandly until the flare up stops.

the only thing that has ever made a difference is these steroid tablets, I can't stress enough its as if someone has flicked a switch and my I.B.S. has completely gone. I know steroids are not a treatment for I.B.S.- does this mean its just a placebo affect and its not actually helping?

Im gutted that I've finally found something that fixes it, but it isn't actually a treatment for it and steroids are too risky just for I.B.S. so it isn't an option to treat it😞

Didn't want to read and run.

I have some kind of ongoing stomach IBD that they regularly treat with steroids. It is very similar sounding to yours and the steroids will suppress it but they can't give it to me long term as it thins bones and demolishes immune systems apparently among other fun side effects. (That said this is a really high dose of Prednisolone before I panic you at all!) I tend to have them max 3 prescriptions a year on decreasing dose, but they 100% could what has solved your IBS rather than being placebo! Amitriptyline is another one that is used for this as its side effects are great at slowing the gut down, my friend has this as she has IBS and migraines and it solved both of these.

A lot of people who are told for years and years that they have IBS, actually turn out to have Crohn’s disease or Ulcerative Colitis, both of which can be treated with steroids and other things. Have you actually had a colonoscopy, or a CT scan? I’ve heard endless stories of people who’ve been told for years and years that it was IBS when actually it wasn’t. There are also several other medical conditions with various symptoms including bowel problems, which can be treated with steroids. I used to know someone who was told for years and years that nothing else was wrong until one day she was diagnosed with something else called Addison’s disease.

Wait a minute, did you just say you occasionally have blood in your stool? That is absolutely not IBS then. I think you should push for another gastroenterology appointment. I’m so tired of seeing thousands of people constantly fobbed off with an IBS diagnosis when something else serious is wrong.

Came here to say this too.
When you say you've had calprotectin done. What were the levels?
I have small bowel Crohn's. My calprotectin levels are low, I had clear MRIs, clear colonoscopies, clear sigmoidoscopies and clear CT scans.
I have small bowel Crohn's as diagnosed by a last chance 'pill cam' and I've heard many similar stories so definitely worth looking into.

I'm sure people do get misdiagnosed, but saying occasional blood means it's absolutely not ibs, is just incorrect.

You can get bleeding with IBS but your symptoms sound like IBD and the fact the steroids work like magic is interesting as that’s what they give to treat a flare up in my ulcerative colitis. Calprotectin may only show something when symptoms are at their worst as with the other diagnostics you’ve mentioned. You It sounds like you’ve had a lot of investigation but this is worth discussing with your GP.

I was also diagnosed with ibs after all imaginable tests, but was going through perimenopause at the same time. Once my periods stopped, ibs improved massively. Might not be your case at all but worth considering, hormones can cause havoc everywhere in your body

steroids are first line treatment for colitis flare up- seems like you have IBD

Steroids are anti-inflammatories

Steroids reduce inflammation so I suspect that’s why the IBS is better. You might be able to get a GP to prescribe a low dose of steroid off-label for IBS - something like fludrocortisone (I don’t know if that one would work, only that it is prescribed off-label for other things).

Have you tried mirtazapine or amitriptyline yet?

Ulcerative Colitis sufferer here - just wanted to echo what others have said, that you likely have colitis or chrons (symptoms sound familiar) and you need more investugations.

A friend of mine has chrons in the small intestine but it wasn't picked up with a colonoscopy... I think she had to have some kind of scan...?

I was diagnosed with Crohn's in my early twenties and then a few years ago in my 40's they said my last colonoscopy didn't show inflammation so I didn't have it any more I had IBS! Not sure how it just disappeared so I just say I still have it as my symptoms are still the same.

thats really interesting.

I can’t explain how much the steroids have helped. I can eat food properly- I haven’t had diarrhoea once, haven’t had any pain or discomfort, the cracks and cuts at the side of my mouth have healed up and I feel so much better. The steroids are for something else but expected the ibs to get worse as a side effect but they have got so much better.

all my tests have been normal including the scopes so they won’t do anything else and I was discharged and told to manage my IBS. I was referred back again and again after the symptoms didn’t get better but they will not see me because it’s IBS, no matter how much my GP said he can’t manage the symptoms. If I want further testing I’ll need to pay privately but I can’t afford that at the moment so I’ll need to save up

not sure what to do from here! Glad I’ve actually had some improvement but not looking forward to it all starting again when the steroids stop.

Can your GP refer to another hospital? Cracks by side of mouth could also be Crohn's as you can get Crohn's disease anywhere in digestive tract - including in your mouth. I have Crohn's and have had the same experience with steroids - feeling noticeably better even after just one dose. Have you contacted the charity Crohn's and Colitis Uk? They've recently launched a campaign for early diagnosis, because it's so common that people will take many months or years to get a diagnosis. They may have some suggestions of other routes you can take or possibly resources to help your GP make a stronger case.

And obviously we can diagnose you over an internet forum but I'd also say your symptoms (especially the mucus, bleeding, and symptoms around the mouth - although these obv could be unrelated) mean IBD, Crohn's in particular, should be taken seriously. The fact that steroids have made such a difference does suggest some kind of inflammation going on.

Obv that should say - we can't diagnose you via an internet forum!

You need to go back preferably to a different hospital. Clear scopes mean nothing. Explain everything you have hear and about the steroids. When they try to fob you off with IBS ask them how they ca be guaretee you don't have small bowel Crohn's where the scope can't reach.
Ask your GP to find out exactly what your calprotectin levels were if you no longer have the letters.

Sorry to hear this OP. It doesn't sound like ibs to me either , that was put on my notes behind my back and eventually they tested my calprotectin and it was 400. They were convinced it was crohns of small bowel as my vomiting is horrific. I've now been fobbed off again as i have clear mri of small bowel .
What was your calprotectin? I was told ibs would be no higher than 50 .

Google Addisons / adrenal insufficiency and get your GP to do an early morning cortisol blood test.

Ibs type symptoms and / or diarrhoea are one of the main symptoms of it and steroids are the treatment (steroids replace / replicate cortisol). However it is VERY rare (about 1 in 100,000 people have primary Addisons - more have secondary but this is usually caused by being on steroids for another condition like asthma long term and their usage suppressing your adrenal response).

I have Addisons, and lupus and other things. Ibs type symptoms were the first symptoms I had .

thanks for the help. I dont know what the calprotectin was but I was always told it was normal and its been done at least 4/5 times. I asked to be referred again but they said no as it isn't being accepted and they won't refer to another NHS hospital unless privately which I will need to save for if im still having problems. I was told it was iBS from anxiety which it very well could be but even if it is that I still need help to manage it and nothing has helped until now.

I can't explain the difference the steroids have had- its like someone has just switched off the symptoms completely

Your symptoms sound like my symptoms OP, and my symptoms are crohns (right down to the little cracks at the side of my mouth). Which would explain whythesteriods

Gah! ...why the steroids helped.