To ask if IBS can be "cured"?

[BelieveinFairies]

I've had this going on for a year now, and I'm so fed up of it! I've lost a load of weight and (sorry for excessive information) have diarrhoea aaaalllllll the time. I've even had "accidents", it's just grim and embarrassing too!

It's definitely IBS (my GP says) as they've checked for bacterial things and everything was clear. There's also no sign of anything properly nasty. So I've done all that has been recommended - dietary changes, cutting out things one at a time to "test" if it makes any difference. But I'm struggling to identify any obvious trigger and it's basically just been about managing symptoms. Every day. For over a year. And I'm fed up!

Being realistic: is there any chance to "fix" this, or do I just have to accept that this is how it is, and find ways of managing better?

They've done colonoscopy and biopsies?

I have had colonoscopy confirmed ibs.
Ibs is a diagnosis of exclusion.
I had bloods, stool tests, examinations and finally a colonoscopy.
I have never lost weight with mine. I have flare ups and times when I am OK. I get through the flare ups with buscopan.

The weight loss, sudden onset and the extreme nature of the symptoms, I would be pushing for more comprehensive investigations.

With weight loss and the severity of the diarrhoea, surely they’d do a colonoscopy?

I think you should push for more.

They referred me for an ultrasound and said it was all fine, so no need for further investigations. I just assumed that they knew what they were talking about!

I guessed that the weight loss is just because I'm having diarrhoea, like, up to 10 times a day It's like the food is going through me too quick! So I assumed weight loss is a natural consequence.

Have also tried Buscopan, but it doesn't seem to work too well for me!

fedup.com.au/factsheets/symptom-factsheets/irritable-bowel-symptoms-ibs

www.fedup.com.au/factsheets/support-factsheets/introduction-to-food-intolerance

These follow RPAH Allergy Unit Elimination Diet. It’s the best of its type. There is also a fb page. Pm me for details. A trained dietician is highly recommended as it’s tricky to do yourself.

But life can improve and you can live well.

Hello, unfortunately I don't think it is possible to cure as IBS, it's just managing it. Mine is now 100x better than it was a year ago though so don't lose hope.
Mine started off around 5 years ago with what I thought was food poisoning at the time as I had sudden diarrhoea from eating something which I had never had before. My symptoms got progressively worse until Dec 2019 when they were so bad i was having to take sick leave from work. My symptoms were mainly bad cramping, diarrhoea, extreme bloating, gas and my stomach would feel like it was bubbling like a stew all night after I would eat, which I was trying to manage with mebeverine (prescribed), buscopan and immodium. I lost about 5kg in a month or so and at this point I had been referred to a specialist by my GP for further investigation however the waiting list was very long. I had already tried the elimination diets recommended by my GP however these didn't help. In Dec 2019 I was getting desperate and developing extreme anxiety and starting to feel depressed, so after researching everything I could to try and improve my symptoms I persuaded my GP to prescribe me 10mg amitriptyline which I am still on. Amitriptyline is an antidepressant but for some people also helps with ibs symptoms particularly the painful cramping and also can help diarrhoea. Might be worth a try for you. I have found this helps my symptoms particularly the cramping. This might be a bit extreme, but around this time I decided it must be something I was eating to cause this so I cut out everything except white rice. I ate only this and water for a week and my symptoms started improving, so next I introduced plain chicken and I was feeling a lot better after 2 weeks of this. By doing this I discovered all my triggers, mainly I am gluten intolerant, and I also struggle with very fatty or greasy foods such as lamb or fried food, too much fibre and anything very spicy which are easily avoidable. I have been gluten free for over a year now and all of my symptoms have gone except for occasional short episodes (usually diarrhoea in the morning but it goes away after taking an immodium and I feel fine) maybe 1 every 2 months which is such a huge improvement from before and managable. I think the eposides could probably eliminated all together if I was a it more careful about eating healthily. I think alot of ibs is caused or made worse by anxiety as well and it becomes a vicious circle. I was terrified of eating out in case of an attack. At my worse point I didn't want to eat anything anymore because I knew I would be in pain for hours after it. At some points I was close to going to A&E because of it. Now I can eat almost anything, there are lots of good gluten free options and I feel it hardly affects my life now and I feel normal. I still take the amitriptyline as I find I feel better on it so I would recommend trying to see if you can get it prescribed to see if it helps, and immodium instants are great for the occasional diarrhoea episode. Everyone is different but I have come to the conclusion that I just have a sensitive fussy digestive system that I need to be a little careful with. If you have an intolerance on your diet I think its takes a couple of weeks after you stop eating it for your body to recover so it may be that you didn't elimate the food for long enough to see if it may be your trigger? Hopefully some of what I have found to help me gives you some ideas to try. Good luck

I have zero faith in doctors to deal with IBS. I had serious gut issues throughout all of my adult life (I’m getting on a bit now). I have been admitted to hospital twice with acute pain, and a nice consultant told me that IBS just meant that they didn’t have a cause for my issues, but that there would be a cause. The NHS just weren’t prepared to look for it, despite the fact that I had passed out with pain.

I sought help from a private nutritionist, and proper testing showed that I had gut candida. Within days of changing my diet, symptoms started improving, literally days. If you have oral or genital thrush, or athlete’s foot, this is often a sign that you can have gut candida too.

I was later found to have SIBO (small intestinal bacterial overgrowth), and have a mild dairy intolerance. I also have an intolerance to gluten, and yet GPs didn’t even test me for coeliac disease. Intolerances and deficiencies can cause symptoms too.

The only time I have problems now is if I eat something I shouldn’t (not necessarily deliberately).

Have you not tried Mebeverine? I find it works really great.

Just seen your second post, yes maybe you should push for more investigations. You can get weight loss with extreme IBS but yours does seem a bit sudden onset and continuous.

Have they tested for clostridium difficile?
www.guysandstthomas.nhs.uk/resources/patient-information/infection/fmt.pdf

I don’t understand how GP can categorically state IBS when they haven’t done a colonoscopy?

They are so dismissive!

My brother died from bowel cancer at the age of 25 after years of being fobbed off over ‘gut issues’ and being told he was too young for it to be anything sinister.

I’m 💯 not saying that this is the case for you OP but please go back and demand further investigations as you need to know what is causing this and what things you need to try in order to get on top of it

If you google search antibiotics cured IBS, you will see studies and articles claiming this. For clostridium, colostrum has been shown to help. But antibiotics help H pilory and other infections. You need th for long enough, not 3 days, not 5days, not 7, at least 3 weeks. Thousands of women have been told they have incurable Interstitial Cystitis and Professor Malone-Lee is curing many in London with long term antibiotics. I would be dead of I believed the NHS and their incompetent and negligent ‘diagnosis’

Sorry, that should be ‘at least for 2 weeks’ not 3, according to one study I saw

Don’t know about IBS in general, but re diarrhea taking Iron tablets helps with that. (Kind of the opposite how magnesium helps with constipation.)

Above poster reminded me of this thread. Some interesting info on here
www.mumsnet.com/Talk/general_health/4201817-Vitamin-Deficiency-Hypothyroidism?pg=2

Oh op sounds like you have it so bad! I did to in my late teens and early 20s but even then not as bad as you're describing.
I dont think it can be cured but it can be managed.

I take acidophilus prebiotics which I think have made a big difference. I also do IF which has helped to although I'm not sure if theres real scientific work behind that. I use buscopan when I need to and imodium when desperate

When I was young there would be certain triggers, like really fatty food, eg fish and chips would make me so so ill. When I was pregnant with dd i had the biggest craving for fish and chips. I was scared to eat it but since pregnancy had calmed things down I did and ever since I can eat fish and chips not bother. So weird.

My main triggers now are onion, alcohol and generally eating too much. Sometimes my flare ups are caused by nothing in particular

I hope you find some relief soon op. Keep pushing the drs, the weight loss doesn't sound right

I have a daily immodium. Doesn't solve the problem but means I can have some sort of a normal life.

Have you had a Sechat scan? I have bile acid malabsorption and my symptoms were the same as yours including " explosive diarrhoea" [ as described by my consultant ]. I thought mine was IBS for many years.
The only way to confirm this is the Sechat scan. Very easy test you go to the hospital and have to take a pill, you are then scanned and then a week later you go back for another scan which can confirm BAM. If it is this you are given medication [ life long ] and it can make a huge difference.

Also have you tried the FODMAP diet? It is worth trying and can help

IBS should only be diagnosed when everything else has been ruled out, the only way to rule everything out is with a colonoscopy.

You need to go back and insist on a referral. I'm really surprised your GP hasn't done this.

@UncomfortableSilence

IBS should only be diagnosed when everything else has been ruled out, the only way to rule everything out is with a colonoscopy.

You need to go back and insist on a referral. I'm really surprised your GP hasn't done this.

Completely agree

Yes defo push for both colonoscopy and endoscopy, as pp it sounds extreme, sudden and continues. It doesn't sound like it is triggered for example. And agree ibs is usually when everything else is discounted. With your GPs attitude I doubt they have exhausted all avenues.

Mine is to do with stress and mushrooms. I gave up teaching, and now I can even eat mushrooms again!

Another to say you need to be referred because there are so many other digestive issues they need to rule out. Blood tests, colonoscopy, endoscopy etc to rule out coeliac, Crohn's etc.

Once you have a concrete diagnosis then you can start looking at works for you. Unfortunately as IBS is that catch all diagnosis for all sorts of gut problems that aren't from known causes, so there is no one treatment to help it. I had an NHS nutritionist work through options with me.
Some people have success with FODMAP diets or supplements (medical grade probiotics, fish oil).
For me FODMAP did resolve most of my issues and is very manageable now. I identified the triggers and avoiding them made my life normal again. It then became even milder during/after pregnancy.

That sounds really extreme, I'd be asking for more specialist investigation - my GP ordered all tests possible in one go (because he was a fellow sufferer).

As for @picklemewalnuts, stress and mushroom are a bad combination (also an educator - it's been a 'shit' year - pun intended).

You say you've cut things out, but have you done serious, full-on, boring-as-hell, FODMAP as @CheeryTreeBlossom suggests? Probably not if you haven't been refered to a dietitian. You can work it out for yourself with the help of the Monash University app, but it's a slog.

I’ve had it for almost 30 years and it’s nowhere near as bad as it used to be. I’ve tried all sorts and I’ve found a series of colonics to be very useful. When I was diagnosed Diabetic I changed to a low carb diet and that has helped enormously.