My digestive issues have destroyed my life.

[Areyoutakingthepeas]

I really don't say that frivolously.

I was diagnosed with 'IBS' decades ago and despite doing everything within my power to be able to control it to a level where life is enjoyable this has failed miserably over the last 8 years or so (when it seems to have kick started into getting much worse).

You could suggest to me endless foods, diets, medications, alternative practises etc and I can almost guarantee that I will have tried them all and more likely spent a small fortune in the process.

As much as I have tried my hardest not to, my day to day life is dominated by my guts. They are unpredictable and never feel in harmony with the rest of me, they feel alien-like and I genuinely feel abused by parts of my own body.

Older age, perimenopause (I am 53 and still in bloody perimenopause), daily stress from caring for a parent with dementia (I know only too well this is not helping the situation at all but even with extra care and help I am still having to watch my mum slowly die from Alzheimer's which is killing me), a recent diagnosis of adhd and discovery that my decades long gynae issues are actually endometriosis and adenomyosis are NOT helping the situation at all.

As soon as I wake my 'guts' are switched on (that's if I have had a good night and not been woken but gurglings and growlings!), I need to use the loo straight away and as I have IBS-mixed it could be one or the other or a combination of everything all at once!. Breakfast or the first meal of the day is of no pleasure at all because as soon as food enters my mouth my stomach is growling and gurgling and I feel like I may need the loo again and no matter what I eat (I follow a low fodmap diet avoiding dairy, gluten and all my known triggers etc) the whole of my digestive system starts up. Acid, burping, nausea, gurglings, feeling of needing the loo again and on it goes. I will often receive a small respite around 12-3pm for some reason and then it starts up again around 4pm and then another respite some (not all) evenings.

People tell me it's all in my head or that I just need to relax etc but that is so much easier said than done when your digestive system hates you. Why on earth would I put myself through 2 very uncomfortable colonscopies (not to mention the gastly prep), 3 gastroscopes (last one a month ago and results till not back), a pill camera endoscopy (like swallowing a torpedo) and various scans and prodding and poking, for the fun of it? I have sat through endless counselling sessions, gut directed CBT and even acceptance therapy.

I honestly feel as though I have no life. I only work a fews hours a week during those few 'good' hours per day as I need to be home most of the time (or at my parents) so money is always tight which is depressing in itself. I barely go out for a meal and the last time I did, 6 months ago, I spent half the time in the loo. I haven't been abroad for 25 years - my dc will turn 18 and 21 this year and they would love a family holiday abroad to celebrate, the thought is terrifying to me.

I have tried so much to help. Trialled many SSRI's and TCA's but they left me with awful side effects, I have seen endless dietitians but I honestly don't think it's food, I think it's something else. I have had hypnotherapy sessions more times than I care to think about and still listen to the recordings every day as they help me sleep but that's about it. I exercise (walk the dog every day), I am slim, I only drink water, don't smoke or drink alcohol, very dull and boring indeed. I have taken all the off the shelf and prescribed IBS meds and none help long term or my body simply gets used to them and they stop working. I have tried various probiotics (even kefir) but they do nothing to help. My GP just shrugs now as she has exhausted all options.

I can't help thinking that maybe it isn't IBS at all and something else but no doctor suggests this so I know that I have to accept my life has been ruined by this condition and just live with what I have but I find that so difficult because of that niggling feeling something else may be causing this and surely if I could get to this 'root' cause then I could try tackling it from some other direction and have some quality of live back where I can eat without feeling there is a gremlin residing within me day in, day out?

Has anyone else experienced anything like this and found it was indeed something else which was more manageable?

I live in too much hope maybe?

Gut bacteria is probaby something you know a lot about OP, so I'm sure I'm not telling you something you don't know! I'm guessing you eat a good diet, but have you been able to tolerate fermented foods or probiotics? Obviously this wont cure it, but I'm guessing good gut bacteria has to help.

Hugs, it must be horrible. My DH has IBS too and his flares up badly from time to time. He's found it better since he started using lactose free milk, as my DF figured out it might be a trigger.

Going back to good gut bacteria, have you ever thought (a very last resort here!) of a faecal transfer?I think that's what it's called, where they put someone else's faeces into your gut to colonise it with bacteria that might help.

Apart from that, I'm not an expert obviously, so I am not sure what other good things to suggest. With regards to my DH's IBS, I have a theory his started during his teenage years when he became extremely anxious and had agoraphobia. I'm convinced if he'd not be very anxious, it might not have happened as obviously the gut is the second brain and has lots of serotonin and dopamine receptors that affect mood etc. I could be totally wrong here though!😅

You’ve posted about this many, many times before. Has any of the excellent advice you’ve had previously been useful?

https://my.clevelandclinic.org/health/treatments/25202-fecal-transplant

Have you tried yoga to relieve symptoms of IBS? It can help to improve digestion and reduce stress in some people.

I'm sorry your DH suffers too.

Stress and anxiety definitely play a huge part for me. I was first diagnosed in my mid 20's after a year or so of continuing stressful situations, individually not too bad but stacked one after the other seemed to trigger things off and I've never been quite the same since. The last 8 years have been very stressful again and things have kicked off badly again.
I have tried many different strains of probiotics and fermented foods but none have made much impact tbh.
I have looked into fecal transplants but they are quite expensive and I don't have the funds for that sadly.

I've posted a few times, not many many times.

The reason I'm posting again is due to the fact I did go away and try previous suggestions but sadly nothing has helped and as before I am desperate to feel better so am asking on a large social media platform with many users incase someone may have a suggestion I've not tried before or know of any knew medications/treatments etc that I've not come across. Is that ok with you?

I have tried yoga several times, I find it very relaxing but sadly hasn't had much impact on my actual symptoms.

Wouldn't updating one of your previous threads make more sense? Then people can see everything that's already been suggested and that hasn't worked for you rather than starting all over again. Just a thought.

Random, but do you drink alcohol?

I have endo and ibs.

my ibs symptoms improved massively when they lasered a fuckton of endo off that had been attached to my bowel.

Have you tried carnivore diet?

After 3 weeks my symptoms were completely gone. I was able to reintroduce some things but it was very very apparent what foods were causing the issues and I mostly avoid them.

When it flares up again I go carnivore for a few weeks again and it clears up.

It saved my sanity.

I just wanted to offer my sympathy, OP. It must be very hard. I have a 'sensitive' stomach and that's bad enough.

Were you tested thoroughly before an IBS diagnosis? It needs many, many things ruling out first.

I’m sorry you’re going through this and as an IBS sufferer for 20 years + I can relate. Mine is almost always IBS - D. I have found a link to my hormones too. I have just learnt to cope the best I can and support my digestion as much as possible.

Biokult probiotics are good, and I’m trialling slippery elm too. Immodium Instants if I’m travelling or going out for dinner are an absolute godsend but I try not to take more than 1 per day.

I have recently started to read Ultra Processed People and I’m not trying to cut as many UPFs from my diet as possible: swapping bread to sourdough etc. I do wonder if all these UPFs have messed up our digestive systems because 30+ years ago I don’t remember IBS being a thing?

My daughter had something similar and we headed off down a long and stressful ARFID diets and various allergy things - with come back if no improvements - a private clinician suggested a low level protozoan may be at fault. Took meds for that and did solve.
check back perhaps to see if anyone has considered this - her symptoms weren’t obviously protozoan like giardiasis - but he said that was how it got missed (ie wasn’t yellow smelly floaty) but for her, thankfully, did solve it as, like you, it became really limiting and miserable.
good luck and fingers crossed.

Not suggesting as a solution, but have you tried fasting to see if the symptoms resolve?

Have you tried Cholestyramine, @Areyoutakingthepeas?

I take it for IBS and lymphocytic colitis - it’s a bile acid binder so that when bile acid reaches the large intestine it does not damage and inflame it, causing the diarrhoea etc of IBS (in most people, it is reabsorbed in the small intestine).

I still get flare ups and bad days, but I get a lot more decent days too.

Apologies if you have tried this already - I can empathise with how stressful and difficult your life is - I don’t blame you for being at your wits’ end.

Have you tried anti histamines? As crazy as it sounds high histamine can mimic IBS

Have you had a sehcat test for bile acid malabsorption? You sound exactly like I was before being diagnosed with BAM. Now beautifully controlled by two or three tablets a day. Life changing.

I feel for u. I have ibs and it is hard. I have mine fairly under control. But then something changes and I have to re think all over again. My lastest thing for my stomach to start hating is re heated food. Used to pre cook all my meals so I had something to chuck in the freezer as I cannot have an ultra processed food at all. After weeks of awfulness. Chat gpt ( which by the way has been more useful than any doctor I have spoke to. Said it maybe the reheating of my food. Yup. It was that. Mainly potato. So now I cannot even have re heated food anymore.
I know people will say don’t do it. But honestly chat GPT has helped me a ton. I plugged everything in and it came up with some ideas that actually worked.

I have ibs. I am wheat and dairy free. I have a bladder that reacts to food I get a bad inflammation effect if I eat anything that is processed. and I currently am waiting on a gallbladder operation so as u can imagine my food is very limited. But it really did help with ideas of wha to do. Maybe give it a try.

Similar story here, some things worth mentioning:

IBS is an umbrella diagnosis. Research is emerging to show different conditions with different etiologies that are grouped under it.

Have you been tested for Bile Acid Malabsorption? It’s a relatively non invasive test.

I combine the Low FODMAP Diet with the Fast Tract Diet and a Low Sulphur Diet.

Have you looked into different types of SIBO? These often underlie IBS diagnoses. An initial infection causes low lasting gut dybiosis, which can progress to being an autoimmune condition if there are repeated infections. The work of Mark Pimental is very illuminating on this.
Some of the types of SIBO are treatable wit antibiotics.
Neurodivergent people are more prone to both gut issues and autoimmune conditions.

The Fast Tract Diet focuses on certain starches. Interestingly, the opposite type of starch from the SCD (Specific Carbohydrate Diet). Starch is something the Low FODMAP Diet doesn’t really address,
so it’s worth trying both of the starch focussed diets because one helps some people, the other helps others. It might be down to which type of bacteria are in dysbiosis in your gut.

In addition to diet I also use some specific enzymes to increase the range of foods I can tolerate. These are Fodzyme (works on fructans, galactans and lactose), Fodmix, works on fructose, galactans and lactose, Fructase, works on Fructose and Starchway, works on starches. I also take a DAO supplement called DAO mini which helps with digestion generally.

I have also found taking anti histamines helpful in calming inflammation in my system generally.

The Low Sulphur Diet limits sulphur and sulphites. People who have Hydrogen Sulphide SIBO have bacteria in their gut which turn sulphur/sulphites in their diet into sulphuric acid, hence burning, urgency, gut pain. Hydrogen Sulphide SIBO causes both C and D, specifically C followed by D. A low sulphur diet helps, as does use of Pepto Bismol when symptoms are really bad. So does supplementing with molybdenum and taking baths with a lot of Epsom salts regularly (this means you absorb sulphur dermally, rather than needing to do so in the gut- the theory being that your body unregulated the sulphur reducing bacteria for a reason, namely an issue with the production of the sulphur the body needs which is rooted in a genetic issue, again seems to be some overlap with this and neurodivergence).

There is a specific probiotic called L. plantarum which has helped me, I use Jarrow Formilas Ideal Bowel Support. Six tablets a day for a month initially, then dropping to one or two tablets a day. Not a cure but gives margin for error and reduces pain a lot. For me, bacillus subtilis and l.rhannosus have also been beneficial at times. The thing with probiotics for me has been to research specific individual strains rather than get a product which contains many strains- some strains make things worse.

There’s also some very recent research out of the Cleveland Clinic, around a bacteria called t.immunophila. It looks like it is capable of knocking out the immune system in the gut, making people very susceptible to gut problems.

Isn't quite hard to get this test.