Does anyone else have a crap digestive system?

[Thewholeshackshimmy]

Because mine just seems to hate me.
I am 48 and was diagnosed with IBS 23 years ago. I’ve had some good and bad years in all of that time but 4-5 years ago everything ramped up and my digestive system just has not behaved itself since.
I have about 3-4 days per month feeling ok (ish!), the rest of the time I have symptoms from throat to bum!
I will suffer indigestion, excessive burping, a very gurgling stomach (which sometimes wakes me in the night), a burning and acid feeling, fullness and no appetite, feel very nauseous (these symptoms are all 100% worse mid cycle and will last about 10 days)
I get lower gut issues too, lots of gurgling and bubbling, very bloated especially in the evenings (can look 7 months pregnant) and farting loads (the pain from this gas is immense at times and it’s a bloody good job I’ve been with dh for a very long time!). I get the feeling of needed the loo at times. Sometimes I am constipated and struggle to go, other times much looser.
I am sure I am in perimenopause and that my cycle has some kind of influence.
In 2019, I had a full colonoscopy and a gastroscope with biopsies, I had an ultrasound scan and a CT scan, nothing found.
I also have gynae issues with uterine polyps and ovarian cysts at times (not sure if there is any influence there?)
I saw a gastroenterologist again last week and he insists it’s just IBS and didn’t offer any help and with symptoms virtually every day it’s so hard to believe it’s not something else.
I follow the low fodmap diet, I have no dairy as that causes me diarrhoea, I’ve had times with no gluten but that doesn’t really help much, I have no alcohol, caffeine, artifical sweetners or any gas producing foods, I walk every day, I listen to gut directed hypnotherapy. Most IBS meds don’t help either.
I do all of these things yet still have these tiresome symptoms almost every day. They are unpredictable and can happen anytime of the day.
Frankly, I just wish they would piss off as they are ruining my life, I live a half life because of these symptoms.
Is there anyone else out there who understands? My husband doesn’t, my friends don’t and the doctors don’t understand just how bloody draining it is having an unfriendly gut living within your body!

Hey, @OP. I'm currently at the gates of hell myself. Long story.

I'm on Day 22 of a seriously restrictive low fat, low FODMAP diet. . When you say you 'follow a low FODMAP diet', can you say a bit more? It's an elimination diet that's temporary, 2-6 weeks, to find out what the culprits are regarding your IBS symptoms.

You do need probiotics, and that can be hard with low FODMAP. But I've come up with a miso soup that does the trick, and you get all the ingredients in a supermarket:

Miso paste, add to boiling water to make a soup base, gently simmer and stir in vegetables - carrot, courgette, radish, the green tops of spring onion, chill to taste. Add tofu, gluten-free soy sauce or fish sauce. Eat.

IBS is a horrible, debilitating disease.

SpindleWhorl I am sorry you are suffering, it truly is horrible. Is the diet helping? The miso soup sounds fab, I will definitely try that, thanks. When I say I’m low fodmap what I mean to say is that I am ‘stuck’ on low fodmap. I have tried the elimination stage 5 times in the last 10 years! The last two times under NHS dieticians. I followed the diet strictly eating only green light foods and no stacking. Unfortunately I did not experience a strong enough reduction of symptoms to then start the reintroduction stage. I was told by the dieticians that I am probably one of the 25% the diet doesn’t help and that was it, I was discharged after that. The issue is that the diet has left me with an immense fear of high fodmap foods so I am still eating low fodmap even though I know that is detrimental to my gut flora. For that reason I suppose I really should introduce probiotics.

Are you me ? I hear ya! I take one sachet of Laxido daily. I also gave up eating any processed meat(bacon , ham and sausage etc) also cut down on other meat, and this seemed to help. I have also had colonoscopy, gastroscopy, endoscopy inter uterine tests plus ultrasound, CT and MRI scans. They found cysts on liver and kidneys and polyps. But apparently I just have to live with it ffs

I'm certainly having a bit of a remission, @Thewholeshackshimmy, but I don't know yet if that's the low FODMAP or the very low fat, iykswim.

I have classic gallbladder symptoms, but US and CT scan have apparently ruled that out. I have had my ovaries removed previously so not that.

I'll have to reintroduce something soon ...

How about trying miso soup for a week, with your 'safe' vegetables? If you don't like chili, try the pickle juice of a jar of jalapenos for extra flavour.

Then maybe after a week, try kefir as pp said, if you can tolerate lactose and fat? And have you tried Mebeverine, simeticone, Omeprazole?

(Just to add, I'm all sorts of medication for autoimmune diseases too, which makes things extra complex.)

Is the at home kit a breath test @Thewholeshackshimmy? If so I’d wait til the new breath test, Trio-Smart. is available in the UK (probably next year). It’ll give an accurate picture.

I did get the IBS-Smart blood test which was helpful.

All that reaction shows is that the gastro is a dinosaur. There is more knowledge and acceptance of SIBO growing in the NHS but it is slow.

I know what you mean re costs of private doctors and naturopaths. I saw someone here at the naturopath end of things and they didn’t really help much, possibly because it is such an emerging field.

There is a lot of info out there on how to help yourself. Nirala Jacobi and Dr Ruscio have some good info and interviews on their sites. Through a mix of that info and the info from Mark Pimentel/Allison Siebecker I have come up through trial and error with some things that help me manage my symptoms- different probiotics and supplements. So it’s worth working through that pretty well.

Low FODMAP did help me a bit but not as significantly as it promised. So I looked into some other things.

There is a diet called the Fast Tract Diet which I have found very helpful. It looks at differences in of starches, fibres abs sugar alcohols. There is a book and an app. The book comes in different variants for different GI disorders if you get it make sure you get the IBS one.

I also watch my sulphur/sulphite intake as these can exacerbate diarrhoea symptoms.

So both of those approaches might be worth giving a whirl.

i can highly recommend Baolife, it has saved me so much pain, plus has vitamins in!!

really helps keep your gut balanced :)

i can point you in the right direction for it if ya like x

Spotted your post after a particularly bad day, worst for quite a while and sod's law one of the few where I needed to go into the office and with lots of meetings. Grim.

Just a few words of warning about pre & pro biotics, to check they don't have inulin in them. You sound knowledgeable enough from your FODMAP diet experience to know that can be a trigger.

Anything fermented like kefir and kombucha is random - some people find it helpful, people like me are writhing in agony on the floor.

Also re turmeric, be very careful about the capsules. These are curcumin extracted out and as they are very strong often upset the digestive system badly . My sister also had to stop taking it as it reacted badly with her other prescription medications. If you want to try it, the best option to try is Golden Paste, a cooked version with digestible fat and fresh ground pepper. There is a Facebook group called the Turmeric User Group that has a lot of information about GP & why it's better, plus the recipe and cooking methods. Some very knowledgable people on there. I tried it for mild arthritis symptoms but unfortunately couldn't get on with it (bowel pain and terrible belching) but many people find it helpful for IBS.

Interesting about SIBO and IMO, does sound like my symptoms but getting it diagnosed sounds so difficult.

Hope you find some solutions or at least a bit of relief. My symptoms seem mild in comparison to yours and other posters and yet I think they are bad enough. Such a shame yours appears not to be receptive to diet changes.

Tumeric is high in thiols which exacerbate hydrogen sulfide SIBO @Gerwurtztraminer, so interesting that it makes you so unwell.

@KintsugiCat THank you for that! And this is why I love the internet - learn something new to wander off and research when I should be working

Increasingly, my belly is noisy, proper factory gurgling. For some years (early 50s), anything I eat processes really quickly, quite embarrassing at dinner parties when there’s rich food. I don’t know if it’s ingredients that no longer agree with me, but the young ones that my dh works with seem to all have ibs type issues, they’re almost all allergic to various things/seem to have intolerances. I don’t recall my generation having this and I used to have an absolutely iron stomach. 😥

My father had a lot of what you describe and it was a hernia. His stomach had forced its way through his diaphragm and gave the Pain /gas/indigestion/bloating/heartburn/being sick/ and any food had the ability to cause it. Whilst waiting for the op he was advised to lie on his left side to encourage the stomach back through the diagram when it used to flare up. This would happen after most meals .. just something else to throw into the mix. I hope you get the answers you need soon.

Yep, if it's not heartburn, or indigestion or diarrhoea, its at least gurgling or cramps.
I can't remember the last time I ate without side effects.

You are me WestendVBroadway! The ct scan found a big cyst on my kidney, it was scanned regularly for two years but now I’ve just got to live with it too! I must cut down on my bacon and ham, I’m sure it’s not helping.
SpindleWhorl I’ll definitely try the miso. PPI’s unfortunately give me migraines, mebeverine and most ibs meds do nothing, simethicone and peppermint help just a little.
KintsugiCat thank you for the information, there are things you mention which I haven’t heard of so will look into those. The breath test I am looking at is the at home Healthpath one.
ctina891 thank you, I will check that out.
Gerwurtztraminer thank you. I definitely keep a look out for inulin in products as I react to it and it’s a bugger they sneak into everything these days! I did ince make some Golden paste but couldn’t face it as it tasted like the earth lol!
Cherrysoup I too am certain there is more in our foods exacerbating gut issues. Even my dh (who doesn’t have IBS) has a much more sensitive gut these days yet years ago when we met (30+) he had the most cast iron gut of anyone I know.

Iwantedtrianglesnitsquares thank you.
ISpyCobraKai isn’t it just so annoying. Are you anywhere near menopause? I am sure my hormones are making things worse,

I have suffered from IBS for about 25 years, it is quite literally shit! I've found what works for me is intermittent fasting and taking live bacteria and digestive enzymes. I get them from just for tummies, they have a Facebook page called tummy talk too which is really informative and it's a closed private group so you can talk about anything. I rarely have a flare up these days. They've been life changing for me honestly try them

If you add fermented foods (sauerkraut, kefir etc) start off with very small amounts, just a teaspoon, and if OK with that for a couple of days increase a little. Your body may need to get used to them and they can cause explosive problems if you introduce them too fast!

Hiatus hernia, gall bladder full of sludge, they took the gall bladder out now I have bile problems . Menopause finished me off. It comes and goes this week bad. Rushing to the loo from wake up. Nausea, had a bit of mayonnaise tonight to liven up the fish nearly threw up afterwards

Forget caffeine, tomatoes, gluten, dairy etc

Lactose free and gluten free help.

Gave up omeprazole after a decade it's stopped working. Now I buy Maalox from Amazon, take that at night and sometimes during the day.

Holland and Barrett sorted me out with probiotics they do help most of the time

I've had cameras down, up, cat scan, MRI scan everything normal

Forgot to say when I had the colonoscopy had to fast for 24 hours take moviprep. Afterwards my tummy behaved for ages. Cleaning it out did help. Somewhat drastic

I don't want to be annoying but since I've been low carbing and cut out sugar I 've not touched any of the many stomach pills I used to have, no zantac no buscopan Gaviscon deflstine nothing. Bloating has completely gone.

@justasking111 possibly because clearing out for a scope will clear out a lot of the microbiome - if you have 'bad' bacteria (or dysbiosis) that are causing bloating and gas etc, you'll clear a lot out. Problem is that if you carry on eating sugars and carbs that feed the imbalanced bacteria, the problem comes back.

Yes - I have endometriosis and had a recto-vaginal nodule removed. Well most of it - the rest is glued to the back of my cervix and can't be removed without a hysterectomy. I take opiates for endo and a fucked ankle, back and hip problems. To counteract the constipation I take stuff to draw water into the bowel. Unfortunately it doesn't always balance out right so sometimes it's too soft and sometimes I'm still constipated. I have a feeling my sphincter doesn't work properly any more after years of this. I went gluten free many years ago which helped with endo pain and bloating, so that's something! Bowel problems can often be due to endo, especially if they're cyclic - have you been checked for that?

I've just started the Immunity Code book and I'm amazed at the difference it's making. It guides you through resetting the gut biome gently. Not for everyone but thought I'd pop it here in case someone is interested. By Joel Greene

What are the main points, @HummingBeeBox, would you say, that work for you?

I'm finding low FODMAP helpful - is it similar?

@MountainDweller, I think a lot of our problems with gut disease do interplay with gynae issues; but I've never heard of a single NHS clinic that addresses it.

I've been shunted between Gynae and Gastro-Enterology to no avail for three years now. Such a waste of everyone's resources.

I’ve had IBS since I caught a tummy bug abroad in my early 20…and I’m now mid 50s. I’ve had all the investigations and sending off of stool samples, and nobody has come up with any solutions!

Apparently (and sorry to be the bearer of bad news) but our digestive systems do not improve as we age, so it does help if we can get a grip on what’s causing us issues.

There have been some good books written about our guts, how they work, and what we can do to help them. Here is one

www.amazon.co.uk/Gut-revised-expanded-Giulia-Enders/dp/1911344773/ref=sr_1_1?dchild=1&s=books&crid=23LLR4XIILK9P&keywords=gut+giulia+enders&sprefix=Gut%2Caps%2C170&tag=mumsnetforu03-21&qid=1630474940&sr=1-1

As for what works…? It’s not a one size fits all, sadly, and by trial and error, you’ll figure it out. What I would say, is introduce one thing at a time… give it a couple of weeks… and either ditch or adopt!

Keeping a food diary and seeing if there’s any link between your food and your symptoms. I spent about a month on a very simple diet consisting of fish and cooked veg, which quieted my system down before trying out a few options.

I did the FODMAP diet under a dietitian and I have to say it didn’t make a jot of difference, but I have 2 friends who live by the FODMAP rules.

Kefir or Kombucha. I’m not great with dairy but can tolerate a glass of kefir. Be careful if you’re cutting out dairy as you’re cutting out calcium.

Probiotics. Not all are equal! And yes, check for inulin.

No raw after 4.00. Our bodies get tired as we go through the day. Your digestive system does too. Cooked beetroot, or any oven roast veg you can tolerate dressed with home made dressing are a good salad substitute.

I’ve found taking a spoonful of Hemp oil ( high in Omega 3 which we often lack, and is powerful anti inflammatory) a good thing. Just don’t cook with it! Keep it in the fridge and use within a month.

Keep processed food to a minimum. I’ve heard it said that if your granny wouldn’t recognise it, don’t buy it.

Taking regular exercise and trying to meditate for 10 mins a day.

There is such a brain to gut connection that it makes sense to try and get the two communicating, and our immune systems in the best possible place ready for winter.