To ask if anyone has ‘cured’ their IBS?

[ImaHogg]

I know it’s classed as a life long condition but I’ve been suffering for 22 years and have just about have enough of this horrible condition.
I belong to endless IBS support groups but obviously most of the members are people like me who are still suffering a looking for help and advice. I am assuming that if people do have a grip of their symptoms then they are hardly likely to be on support groups.
I’ve tried endless things over the years from the low fodmap diet to hypnotherapy and CBT. None of which have really helped long term.
Two things I haven’t tried are probiotics (some of the reviews say they can cause diarrhoea which is one of my huge fears with this complaint). I’ve also tried a few antidepressants but I couldn’t get past the awful side effects.
I’m 48 and am starting to think that hormones now play a big part as my symptoms became much worse and virtually daily at the age of 45 and I also can’t lie and say I don’t suffer from anxiety as I really do and I have a very stressful life atm.
Late 2019 I had a colonoscopy, endoscopy and ct scan. At the follow up appointment the gastroenterologist said all was clear. I handed him a list of my symptoms and he asked if I had tried all the standard IBS meds, which I have to no relief. He handed me back my list and told me that he couldn’t help me and to go back to my gp!
So I am just wondering if anyone on here has/had IBS and has found a way of living well with the condition and has minimal or no longer has symptoms?
Any advice is most welcome.

Interesting about the bile acid malabsorption- I had my gallbladder out a few years ago and apparently that's one of the possible causes of BAM. But I very rarely get diarrhea, which is apparently the main symptom of BAM. My symptoms are mostly low down stomach/back cramps and gassiness with occasional constipation. I do sometimes get face flushing and puffy eyes after eating, which makes me think it's all food related though.

For those who had bile acid malabsorption was your main symptom diarrhoea? I only get bad diarrhoea a few times a year but my daily issues are gurglings, grumblings, growlings, nausea, acid indigestion, excessive burping, bloating and gas in the evenings, basically a digestive system which is constantly active and seemingly unhappy. I sometimes get constipation too. Could these be BAM symptoms? When I look it up it says main symptoms are diarrhoea and greasy stools?
I have a gastroenterologist appointment some time this year (was referred in August 2020 but due to Covid it’s been on hold to god knows when!). I will ask them about BAM when I eventually get to talk with someone.

What's depressing about this thread is that so many people have experienced from doctors flat denial or an unwillingness to properly investigate their symptoms or reconsider their diagnosis. People often seem to have to go it alone in diagnosing themselves and in finding a treatment that works. It makes mechave little confidence in going back to my gp after tests so far have come back normal.

@lazylinguist

What's depressing about this thread is that so many people have experienced from doctors flat denial or an unwillingness to properly investigate their symptoms or reconsider their diagnosis. People often seem to have to go it alone in diagnosing themselves and in finding a treatment that works. It makes mechave little confidence in going back to my gp after tests so far have come back normal.

The training that's given by the NHS is behind, with regard to what we're meant to be eating anyway, so even the ones who listen are contractually bound to give us poor advice. It's caused me many years of episodes of excruciating pain, with a simple fix I wasn't told, in favour of a 'fix' that made the problem worse.

It is depressing, but that's why it's good to talk to people, and get an idea of other people's experiences. The NHS is depressing; the thread is a relief!

Glad to think you will be asking about BAM

The difference between BAM and a lot of the other symptoms around IBS is that there is a very specific test which will establish whether your body is 'flushing away' the salts required to digest fats or not.

It's one thing that you can get a definite yes or no answer to.

Very likely there may remain some other symptoms but at least one layer of complexity can be clear away. Good luck.

@lazylinguist

What's depressing about this thread is that so many people have experienced from doctors flat denial or an unwillingness to properly investigate their symptoms or reconsider their diagnosis. People often seem to have to go it alone in diagnosing themselves and in finding a treatment that works. It makes mechave little confidence in going back to my gp after tests so far have come back normal.

It is depressing and very frustrating. Over the 23 years that I have suffered with digestive issues I have seen several NHS gastroenterologists and they have refused to do any extensive tests. I had to pay to see a private gastroenterologist in order to get a gastroscope and colonoscopy. Even then, at the follow up, after the procedure the gastroenterologist told me all was clear, I gave him a list of my symptoms and explained how much it’s was having an impact on my life, he handed me back my list and told me he couldn’t help me and to go back to my gp. I walked back to my car and howled my eyes out!

It is depressing, but that's why it's good to talk to people, and get an idea of other people's experiences. The NHS is depressing; the thread is a relief!

Absolutely! That's why I find it irritating when people scoff at people self-diagnosing and using 'Dr Google' (although obviously you have to be careful what you read and believe). With a whole internet full of people who have personal experience of your symptoms or condition, versus a gp who had virtually no training in the area and is probably working on guidance that's out-of-date, it's not exactly surprising that people take matters into their own hands!

Meant to say - and not just random fellow symptom sufferers on the Internet , but also pretty reputable charities and organisations devoted to the area too.

I drink some kefir every day and that has made a bigger difference than any medicine I've been given over the years.

@ImaHogg

the gastroenterologist told me all was clear

It only means 'We can't see what's wrong', rather than 'Nothing is wrong', which proves that their methods are crap, because, as patients, we KNOW something is wrong.

[quote Eckhart]@ImaHogg

the gastroenterologist told me all was clear

It only means 'We can't see what's wrong', rather than 'Nothing is wrong', which proves that their methods are crap, because, as patients, we KNOW something is wrong.[/quote]
Exactly! I’ve lived in this body for 48 years and I know it isn’t feeling right!

I cured mine by cutting out wheat.

I was tested for coeliacs in my late teens and this was negative so I suffered for another 20 years.

Then I thought I'd try cutting out wheat anyway when someone suggested my stomach issues could be coeliacs as I had a redness permanently on my chest and upper arms.

Took 2 weeks and I've not looked back.

I was hospitalised several times in my 20s with bowel obstruction due to constipation. I was on numerous medications and it totally took over my life.

Diet was the key, and still is 30 years later. This was before FODMAP was a thing so I just used trial and error, a food diary, exclusion of foods for a few weeks then gradually reintroducing them. I found dairy, wheat, caffeine to be triggers. I never drink alcohol.

Over the years I have tweaked, and I realised that it wasn't the wheat but rather the yeast that often goes with it. So no crusty white bread but I'm fine with soda bread. I can also eat pasta, but I wouldn't have it more than once a week. I low carb as carbs cause fermentation, that gurgling and hissing I get when I've eaten something I shouldn't have. I only eat meat once or twice a week and stick mostly to a plant based diet. Deliciously Ella is great for recipes.

Ds now has symptoms, GP wasn't particularly helpful so we've gone down the diet route. His stomach noises were so loud you could hear them across the room! That turned out to be dairy, he stopped drinking milk and switched to oat and had a silent tummy almost immediately. Also onions are a problem for him, I use shallots in cooking now. He has improved a lot, but still has some symptoms. He has just finished a course of probiotics, and is taking kefir. Very interesting to read hear that others have found it, and Greek yogurt helpful. I'll get some for him today.

The other thing I think has really helped me I think, is intermittent fasting. I only eat between 10am and 7pm. I've been doing this for a year now and it really seems to suit my system, possibly as it gives my digestive system a break.

Anxiety definitely plays a part for me, so I have tried hard to deal with that, and hormones definitely made things worse, esp the week before my period. Thankfully I'm menopausal now!

So much trial and error I know, but I hope you'll find what works for you.

@itsgettingwierd

I thought I was doomed to poor skin, including rosacea, until I gave up bread. I only did it in support of friend who stopped eating bread to lose weight. She gave in after 2 weeks, and has never lost the weight, but I was amazed that my skin was completely clear, for the first time ever in about 25 years!

I'm not coeliac either, according to the tests, but there's absolutely no doubt that wheat gives me symptoms of all sorts, not just digestive. I can give myself acne and take it away at will, these days!

Forgot to mention the Cedars-Sinai diet as a useful resource too. For me the main aspect of it that’s useful is a 12 hour fast over night and 3.5-3 hours between meals.

I intermittently had diarrhoea - but was often pretty urgent when it happened - but had lots of lower tummy pain and huge amounts of wind (which was really grim). Also had constipation. To be honest, when I saw the consultant he knew pretty much immediately it was BAM, think a good sign is ‘especially grim’ wind. My poor family!
I’m about 7 years in from my diagnosis and now have gall stone like symptoms sometimes. I hadn’t realised I should follow the gall stone low fat diet with BAM. My symptoms are much easier to manage now and I’m not constantly medicated either. I really hope you find something to help you as it’s soooo miserable. I’m another one with complex womb related conditions like endo, ando, cysts and fibroids and it was far too easy for the doctors to link my stomach problems to those and try and send me out the door.

I had IBS (constipation for weeks, followed by up to 8 hours at a time of being unable to move from the toilet) for most of my life. Peaking in early/mid adulthood, when even when I wasn’t pregnant I often looked like I was about ready to give birth as the bloating was so bad.

I had gained several stone and 5 years ago decided to do a v. low carb/keto diet which lasted about 6 months. . I have never had IBS since, although I now only do a semi low carb diet. It is also beneficial to my severe headaches. I still have to be aware of how much wheat/gluten I eat though and in confirmation of what I always suspected - that wheat is the main culprit for me - too much bread now gives me a skin allergy.

I occasionally do a strict week or two of low carb (no wheat/potatoes/corn/oats/pulses/alcohol etc) just plain fish/salad/veggies/ yoghurt and raspberries. I also eat a lot of fermented foods such as kefir and sauerkraut, and drink lots of water. I have kept off most of the excess weight.

So, from today I’m cutting wheat/gluten out of my diet. Adding in some Greek yogurt and possibly kefir (have tried it but didn’t like the fizziness of it), going lower in carb intake and reducing my meat consumption (I really want to be vegan anyway but always worried it’ll exacerbate my gut issues).
I’m going to ask gp this week if my gynae issues could be contributing to my gut ones and when/if I eventually get my gastroenterologist appointment I will definitely ask about BAM.

Oh and sugar and chocolate is going 😩

Like others I had pretty good success with the FODMAP diet. Identified a bunch of trigger foods, most of which I’ve been able to reintroduce if I’m careful about how much and when I eat them (and how many other trigger foods I’ve eaten recently)

Kefir helped a lot with my IBS(D). I think it's definitely linked to hormones as I hardly had any trouble when I was breastfeeding and not having periods. Anxiety definitely makes mine worse, and certain foods, including too much fibre eg brown bread, jalapeños.... but mainly anxiety.

Kefir also comes as water (different starter) I make it, and I’ve noticed that you can now buy same, although I do have to make a trip to the nearest ‘alternative’ town to buy it. It is gently fizzy though and home made can be flavoured as you wish. It can get a little alcoholic though, so not for use just before driving maybe!

Same as so many PPs, my IBS- mixed is triggered by: cow's milk, fructans, wheat, alcohol, stress and fatty food. I have had it all my life- remember being a kid and having crippling stomach pains regularly. Have had all the tests and IBD, coeliac etc ruled out. When I was diagnosed a couple of years ago I was very strict on cutting out wheat and dairy, and did a 2 month course of very strong prebiotic that my dietician friend recommended. This helped enormously. Then I changed job and my stress reduced which helped even more. Then over the last few months/year I habe relaxed more and more on my diet and - surprise - I am now in the grip of the worst flare up I've had in a long time. So have stocked up on GF bread and sheep's yoghurt and tomorrow I am going back on the strict regime. Tonight my stomach is super bloated again and crampy - measured. 5 inches on my waist in bloat/gas. 5 inches. And its so uncomfortable I can't lean over. I don't know why I continue to eat things that do this to me.

LarryUnderwood It’s horrible isn’t it? Nothing worse than the bloat it is so painful. Do you have a favourite gf bread? Bread is one of my favourite things and I miss it terribly when I try going gf but have had little success with alternative loaves, they either taste disgusting, crumble like chalk or a few have even flared my symptoms up, kind of put me off and I end up goi g back to traditional bread and so the cycle continues!

@ImaHogg I think the Schar range is really good. The ready-to-bake baguettes are nice, and the seeded loaf are good. And genius brioche burger buns are lovely.