How on earth do I get my gut health back on track?

[Handcreamqueen]

I have had IBS for over 25 years. It has been up and down during that time, it has never gone away but I have had good times and more unmanageable times but had been able to get on with life, to a degree.

However, around 5 years ago, at the age of 45, everything went haywire. I am 50 now and very rarely do I have a good/symptom free day. Weirdly, if I do have a good day it will be towards the end of my period. I will experience about 2 ‘good’ days which often occur on day 7 or 8 of my cycle and although not the cause I do believe my hormones are a big part of this 5 year ‘flare up’.

At the beginning it was just lower digestive woes but now all of my digestive system is involved and daily, often all day. So I will now suffer from upper issues such as nausea, excessive burping, gurgling, acid like indigestion/discomfort (these symptoms seem to represent the most during mid cycle).
I have lower gut issues which present as excessive gas, gurgling and excessive bloating (usually from 4pm onwards) to the point that I look pregnant and the excessive bloating is so, so painful.

I have zero appetite because of these symptoms.

I experience a horrible time every morning (and dread getting up) and I absolutely promise I am not a poo troll and sorry, this may be tmi but…..I have urgency as soon as I get up and pass what I can only describe as soft, sticky toothpaste like poop which is weirdly hard to pass. I often have to go 2/3 times in the morning and am left feeling like I need to go all day. It’s a horrible disconcerting feeling when you just want to get on with a normal life and to not be dictate by your angry/upset bowel.
My guts will also growl and gurgle all bloody morning long!

I have had endless tests over the last few years. A colonoscopy in 2019, a ct scan that year too. Last year a pill camera endoscopy (to check my small intestines). May this year I had an exacerbation of these symptoms so ended up having another colonscopy in July (with biopsies for microscopic colitis). I also recently had a bile acid scan which came back clear and also several FIT stool tests, a calprotectin test and stool test for parasites. I have also had my upper digestive organs ultrasound scanned (gallbladder, pancreas etc).

I drink only water, eat a low fibre, low fodmap diet and avoid my known triggers which are diary, eggs and a few other veg and fruit etc. My diet is extremely boring and plain. Probiotics and probiotic foods make things worse.
I hate food now as I see it as an instigator of my symptoms.

I have tried all the IBS meds available and now take imodium once or twice a week (anything more and it bungs me up but not in a good way). Peppermint tea helps the lower gut issues but exacerbates the upper and PPI’s help the upper but exacerbate the lower issues 😩

I have spent a small fortune on hypnotherapy and relaxation techniques etc. All to no avail.

My GP and gastroenterologist have given up on me, as they have exhausted all tests and advice.

After years and years of asking my gastro if I have may possibly have SIBO (small intestinal bacterial overgrowth) and her saying no, I actually tested positive for this a month ago but during my consultation with her last week (in which she was over an hour running late so a rushed appointment) she didn’t seem interested in explaining anything about this issue and just said she will see me in 6 months. I now need to go on a journey to find out more regarding this issue (which will probably cost my more money!).

Does anyone have any experience of ongoing gut issues or even SIBO? Have/did you manage to get your digestive system back to a better place? I am literally on the verge of becoming agoraphobic as this is controlling my life right now. My guts literally rule my life.

I really feel for you OP, it sounds like you've tried virtually everything and it must be very wearing. I can only offer what helped me.

For years I used to suffer with IBS with both the constipation and urgency and like you the symptoms would vary, but I didn't realise then how much my hormones fluctuated through my cycle. It's interesting you say the symptoms ease just when your estrogen is high and progesterone is low. Something worth discussing with a hormone specialist maybe? I'm unsure what exact negative effects progesterone has on the gut but it certainly makes me more bloated when my progesterone is high in the second half of my cycle.

What cured my IBS was in the end several years of paleo diet and therapy. I had undiagnosed C-PTSD and I suspect the combo of a reset to my diet (so many bananas and sweet potato and so much apple cider vinegar!) to give my gut a rest in combination with meditation & psychotherapy did me wonders (or maybe it was just the therapy). I can eat whatever I like now (within reason...I try not to overdose on sugar or thick milkshakes) and don't get flare ups.

Rowgtfc72 I do believe hormones are the driving force behind this exacerbation of all my digestive woes. Just hope and pray it settles post menopause.
Buggerthislove Sadly I react badly to Buscopan and the other IBS have minimal positive effect on my symptoms but I do keep trying as many different things as I can, hopefully if I throw enough at it something will eventually stick!
WhatHaveIDoneNo3 I do keep reading good things about bone broth, I need to have a go at making some.
Besthaveanamechange I have never tried Kimchi, I will look into that. Only gut healthy sufferers fully appreciate the absolute joy of a solid and well formed poop. It’s just like winning the lottery lol!
WanderingWitches good luck with the gastroscope, I hope you get some answers.
Clarabe1 My friend went keto 6 years ago to lose weight and found as a pleasant side effect her IBS disappeared. I have contemplated doing the diet many times but have issues with eggs, chicken and dairy so it would be very restrictive for me. Having said that, the more I look into the management of this SIBO I’ve tested positive for it seems the bad bacteria thrive off carbs so maybe low carb/keto is something I really need to explore.
MumOfOneAwesomeHuman I really do need to work with a functional practitioner, I am getting nowhere with the NHS. I did pay a lot of money for a fully comprehensive stool test back in March and it flared up quite a few things but I need it all interpreted by someone like that. I can not find anyone locally to me so would love your recommendation, thank you. I will dm you.

Roxinabox Thank you. I will look into the paleo.

themindfulgut.co.uk

Take a look at this - genuine helpful person who knows her stuff as she's been through it herself.

@Handcreamqueen I suffer from gut issues but I’m certainly no expert, just reading this thread with interest. However the talk about hormones and the effect of them on the gut made me think of Davinia Taylor - she has written books on this and has some successful supplements etc which have very good reviews. Worth having a look!

Thank you Noahbode, I will take a look.
Sotired22 my friend and I follow her on IG. Friend has the books, I’ll see if I can borrow them.

Haven't tried it myself but heard good things about Symprove
https://www.symprove.com/

My son suffers with IBS terribly. It’s delayed him being able to go to uni and interferes with his job and being able to work full time. He has suffered every single day for the last 4-5 years.

The last two weeks he has been symptom free by going Keto. He hates it of course, but eating only meats and some greens has completely stopped all IBS symptoms, it is amazing.

Have you tried a keto diet? Some people have had a good result with that.

I was prescribed antibiotics by my gastroenterologist back in April for SIBO.
I think it was a 10 day course. It was like a miracle! I’m shocked your Gastro did not prescribe you any when you tested for SIBO. Maybe see if your GP can prescribe it so you don’t have to wait until your next Gastro appointment?

I’m sorry to hear you’re suffering so much. I had similar issues and probiotics used to not agree with me either. In desperation I treated myself to a retreat with meditation and fasting. I’d done yoga and meditation retreats before, but I credit the fasting for resetting my gut. It was rough at times - three days without food, only water, then four days with only water, herbal tea or electrolytes. Your body goes through ketosis so it feels tough for a day or so, but it gives your gut chance to heal. You don’t need to poo!

Sounds utterly crap for you OP.
Perimenopause sounds like the culprit due to you feeling good when your hormones levels at the peak spot.
Maybe it will get better after menopause.
It's annoying when people suggest stuff but have you tried slippery elm powder??

Everything changed for me when I went strictly low FODMAP. Used the Monash app for every food type and weighed portions to make sure I was staying within the recommended amounts. My diet is boring, but it's so worth it.

Why has your gastro left the SIBO untreated? I'd contact her office and ask for an antibiotic to treat it. Here in Australia the GP cannot prescribe vancomycin which is the abx of choice for SIBO. Maybe ask your GP and see if they can prescribe it?

Sounds like classic SIBO- you need antibiotics, a long course. Push for it.

Going to sound crazy but Pilates!

I didn’t have classic ibs but my organs were in a complete mess after a very obtrusive c section! Babe was heavily engaged so a lot of tugging and moving and pushing things about went on in my insides. I swear my intestines were not put back in the right place AT ALL. It was exactly as you describe, the poos, the gas, the bloating, the heartburn coming up the other way because the system was just clogged. I could literally feel the rumbles on the outside where everything was getting stuck and spasming to try to move it through.

You will not believe it but Pilates 1-1 with a really experienced person fixed it. Turns out my pelvis was tilted (which abs/ corset would never fix itself), abdominal and corset muscles were stretched and ‘dead’ and so my organs really were just hanging around down there like at the bottom of a shopping bag. Noticeable difference in 6 weeks, entirely fixed in 3 months.

I'm sure you've already tried it but in case you haven't, what really helped with my IBS was psyllium husk capsules. A week of taking them and all of my IBS symptoms cleared up. Apparently fiber tablets like these can help whichever end of the IBS spectrum you're on - if it's constipation they help fix that and if it's the other way, they help that too. So sorry you're having such a rough time of it, OP, that sounds so hard

Acupuncture. The whole package. A good acupuncturist will want the full picture and give you a special diet.
Functional.
Bone broth. Definitely.
No booze.

That combination sorted my IBS out.

I met a microbe scientist recently who told me kefir would be the trick. I've now added kombucha and kimchi and become a fermentation nerd, maybe look into fermented foods?

This. No idea why when meat used to make it worse. Maybe the combination with carbs.

But if I eat no sugar, low carb, no processed at all (bread, pasta, rice etc.) and my only carbs come from vegetables, I am completely symptom free. Everything from acid to IBS is entirely gone.

I'm at the point now that I can go a while eating normally for a while in between before symptoms (Christmas!).

Also, the migraines (also hormonal) went away as well.

It’s a test via Invivo Clinical that analyses the DNA in your stool. It finds everything. I was really sick and within a week of the treatment I was well again. But mine was tropical and I needed some super strong antibiotics that I had to get privately. Gp couldn’t provide. NHS were totally useless - their tests (and I had everything) didn’t pick up the parasite. They also said I didn’t have hpylori but the private tests found a chronic hpylori infection.

I think nhs testing just doesn’t go far enough and these tests are cutting edge. They are expensive but they literally saved my life.

Sorry that was replying to WanderingWitches

Another vote for Symprove here. I had a terrible digestive issues for years and had a flare up last year that lasted six months. Colonoscopy, gastroscopy were clear except for a tiny hiatus hernia. At its worst I was only eating Complan and shortbread biscuits. Tried a four day fast but the pain, bloating and discomfort returned as soon as I reintroduced food. Then I mentioned to the consultant that I’d read about Symprove and he said it wouldn’t hurt to try it. After about two weeks I started to improve. A year later I am feeling the best in years. Still have to be careful - haven’t tried a curry yet - and for other reasons I’ve cut out caffeine and alcohol. I promise I’m not working for Symprove, I was always very sceptical about going down the supplement/weird drinks route. But I was desperate and I think it worked.

How much does it work out being a month?

I live in Japan, so you'd need to get it sent over. If you set google to translate it'll put everything into English for you.

Nothing strong, nothing illigal but my husband bought it a while back for me as IBS was ruining my life.

I took it out of politeness but knew it was a waste of time - bloody hell ot works!!!!!!!

hc.kowa.co.jp/the-guard-kowa/