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.

Thank you kamboozled

You say you have tried different types of hrt but have you tried both continuous and sequential? If it is the progesterone causing the reflux it might suit you better to be on a lower dose over the whole month. You could also try it is a vaginal pessary, it is more targeted so again you can be on a lower dose.

Also I think some women who can't tolerate it just take it once every 3 months. Maybe try posting on the menopause board for more advice.

I used slippery elm when I had a damaged oesophagus a few months ago and it was the only thing that really helped me. It was very soothing and stopped my reflux. The only formulation that worked though was from Neil's Yard, the powders on amazon were rubbish.

I have also tried a really good ‘billion’ probiotic. 2 days later I had the worst bright yellow and uncontrollable diahorrea. Like the OP I’ve also given up. I pray for the best, take meberverine before eating in the morning in work along with a Buscopan if needs be, this sometimes stops the cramps, not always. Most days I take Imodium.

I’m not too far from the loo in work but the anxiety around whether I’ll make it when it starts then makes the cramps worse. I wear period pants and often a pad or even inco underwear if I’m going somewhere really without loos.
I can literally have no warning, maybe a sharp pain and boom it’s pouring out.

Thanks Bubbles254, I will ask on the menopause section.
Ultimateactionhero I really feel for you, it’s a tough way to live is t it? I’ve taken to wearing pads all month long for security and peace of mind. Have you tested for SIBO? Apparently if you react badly to probiotics there is a good chance you could have an overgrowth of bad bacteria? Your symptoms are also similar to bile acid malabsorption, have you had the scan for that?

I haven’t been tested for either. GP is very dismissive about it all.

As you say probiotics make things worse, have you considered that the cause might be a MAST cell issue at the root of things? Perhaps try a low-histamine diet perhaps with anti-histamines and see if that helps... but it takes a while to work. Histamine issues can also get worse around the menopause. A good list is here:

https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf

Do you exercise? Lots of brisk walking and jogging if possible? There's a lot to be said for gravity, movement and digestion.

I had to go gluten free and eat less to settle my stomach.

@Freshstart78 I think this is my issue!! I always feel like things are in the wrong place and sometimes it's like something gets stuck & I get acute pain and have to stretch it out until it resolves!!

You can get your gut microbiome analysed through Zoe alongside other testing. They then give advice on how to promote good gut health. There is a long-standing thread on MN about Zoe.

There’s some research that water only fasting can help reset the gut biome and that it persisted after eating resumed. The study I read was a 5 day water fast which is well beyond my capabilities.

I’ve been looking at intermittent fasting in this regard too. Now there’s an awful lot of dubious claims and frankly I think it’s a new version of anorexia for some people. But what I’ve found interesting is that it works differently at different times in the hormonal cycle.

I know my dm and her sisters all developed intolerances to various foods in their mid 40s that resolved in their 60s. I know that’s anecdotal but there’s a complete dearth of research on hormones and it’s scandalous.

I think you should consider finding a hrt/menopause specialist - I’d be looking for recommendations, someone who is attending conferences, well versed in the latest research - not just a gp. This is a very new field and it’s not covered in general medicine.

Can you tolerate either flax seed or tofu (or tempeh)?

They contain phytoestrogens which there's quite good evidence for them regulating hormones. Lots of perimenopausal women are recommended to eat 2tbsp ground flax a day and tofu 2-3 times a week.

This is an interesting thread as I've been in a similar place but without the testing.

I've recently been diagnosed with Lupus and you cannot eat garlic if you have it as you react badly (DH likes adding garlic powder). I got worse. Turns out he was adding extra onion/powder instead of the garlic powder. Since cutting it right down I'm only pooing twice a day, no more "cowpats", hardly take immidium but the best thing is, because I'm not pooping for England I am no longer feral for food. That alone is an amazing feeling.

The problem is so many foods have the onion powder or extract in it. Baked beans, gravy powder, etc.

I have found that my issues are slightly improved by taking anti histamines, my bowels feel less sensitive so it might be histamine (I also itch a lot and react to wines / spirits with terrible hangovers and flushed skin).

Hi OP, sorry I don't know how to reply to your message but I'm the poster who benefitted from Biomel. So I took two bottles a day for 3 days and by the third day I saw a difference. I know it was this alone as I had forgotten to get my prescription meds (and couldn't get them over the weekend), and anyway, they weren't really working - my doctor was talking about starting me on biological infusions. Once I started to see my symptoms improve, I trialled not taking my meds for around 2-3 months and my gut health improved massively. I only returned to my meds (lower dose than before) as I started getting joint and skin issues (common with autoimmune disease)....but, the key thing was my gut health was massively better. I think they recommend to take 2 bottles of biomel for two weeks to see a difference so you would know pretty quickly.

I have found my GP to be absolutely useless when it comes to my digestive issues. She hasn’t even heard of SIBO!

superninny101 it is something I’ve come across when looking for potential causes of my issues. I’ve always glossed over it as I don’t really suffer from many of the symptoms of MCAS other than the gut issues, however, apparently SIBO does have an underlying cause so I will look into it a bit more, thanks.

megletthesecond I walk my dog over fields for approx 1-2 hours a day and also ride my exercise bike 5 times a week. I am the same as you, I only eat from a side plate, I just can not tolerate too much food in one go.

Neolara I paid for a very expensive, fully comprehensive stool analysis back in March (my 50th birthday present to myself lol!), it did show that I had dysbiosis, candidia and even higher levels of E. coli! My gastro said the dysbiosis is due to the SIBO.

Nonplusultra I have been intermittent fasting for quite a few years, not intentionally but I just can not face eating in the morning. I do live in hope this has all exacerbated due to my hormones. I live in hope things will get better post-menopause. I definitely would like to see a menopause specialised.

Grimchmas I haven’t tried either but will have a look, thank you.

Pixiedust1234 I can’t tolerate onion or garlic either, they are literally in everything. As I follow the low fodmap diet I have avoided them for sometime.

Ultimateactionhero my friend is the same, she suggested antihistamines to me but sadly they didn’t help me.

Thanks pear6782

My son suffers from IBS and I had digestive problems last year. I just cut out sugary foods, processed foods and high fat foods, cooked from scratch, chicken fish and veggie twice a week and red meat once. Lots of fresh fruit and veg herbs and spices and Greek yoghurts. My son has flare ups - usually from coffee and pastry so he avoids them. I try to use chick pea flour when it’s feasible as wheat flour makes us both bloated - tried gluten free but doesn’t work for us

Yes, weirdly I don't almost ever fart, if I rarely do it doesn't smell.

Freaky.

It was Metronidazole I was prescribed

Fiddlersgreen thank you. I’ve made a GP appointment, hopefully she can prescribe those to me. Did you experience any side effects from them?

@Handcreamqueen no side effects that I remember (this was back in April)
I was in a desperate state at that time, I couldn’t work out any triggers as it seemed like I was bloated and windy after every single meal. I was experiencing constipation for days and then diarrhoea. It was awful and I do remember that after a couple of days of taking the Metronidazole I felt better and my husband even commented that I hadn’t rushed off to the bathroom straight after a meal for a few days!

I was going to say, for me I need more fibre not less. It keeps things moving without runny-ness...

Just wanted to mention on the subject of finances OP that you might like to consider applying for Personal Independence Payment (PIP) if you haven't already done so.

The process is long but I'd say on the basis of the info in your OP it's worth trying. It's not means-tested:

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

If you're rejected to start with, ask for a mandatory reconstruction and then an appeal.

Your health condition significantly impacts your life so worth a shot. All the best.
.

DelicateArtificialFlower sadly many sufferers on the support groups I follow have tried and failed to qualify for PIP.