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.

Day 7/8 of your menstral cycle will be low progesterone and low oestrogen (oestrogen levels then start to climb). The hormone levels are the same from day 1 to 6, how do you feel then?

Typically it is the high progesterone at the end of the cycle that leads to acid reflux as it relaxes the osophageal sphincter.

Are you taking a ppi? This will be very damaging to you microbiome and is likely to either be the cuase or the exacerbation of many of the symptoms.
https://consultqd.clevelandclinic.org/long-term-use-of-ppis-has-consequences-for-gut-microbiome/

I think you need to get professional advice to help reduce the reflux that then allows you to come off the PPI. You can then look to address the gut microbiome and lower bowel issues.

What do you eat?

I sometimes have symptoms like those you describe and I take an intestinal cleansing tonic which works brilliantly.

I think I paid £75 for three months. Haven’t had any since. There was an offer on it, if I recall.

There's a really good UK Sibo group on Facebook. Lots of people there with lots of experience. Not me as I'm only at the start of the journey but definitely worth joining. Have you had a hydrogen breath test?

Ive been watching Barbara O'Neill videos on this and other things, she explains things which are upsetting our bodies and it makes a lot of sense. I remember she recommends slippery elm at some point. She may be worth adding to a watch list incase it helps a little or gives some new ideas🙂

Mumof118 I am reading time and time again stories of people curing/controlling their gut issues with keto or even as far as going full carnivore. I do hope it helps your ds. Digestive issues are horrible at any time but when you are young it’s devastating. I was training to become a dispensing optician when it first hit me, sadly it held me back and I never did qualify, it completely changed my path on life.

Was this Rifaximin Fiddlersgreen? I am on a U.K. FB SIBO group and it looks as though it’s a bit of a postcode lottery when it comes to prescriptions for this but I will definitely call her secretary next week and see if I can get a prescription. Did you suffer any side effects from it and did you have any relapses? I have read that sometimes a SIBO sufferer needs the antibiotics several times to kill it off thoroughly.

Tatumm I do need a reset of some kind, thanks.
MrsMorrisey I will go take a look at that, thank you.
The low fodmap used to work well for me marthawashington but this last year in particular has been awful despite being strictly low fodmap, even going back to the elimination stage hasn’t helped.
LovelaceBiggWither anywherehollieSIBO seems to be such a misunderstood thing over here. My GP hasn’t even heard of it. I have been asking the gastro team for the last 5 years if I have it and kept being told no and lo and behold I tested positive last month. Seems on some U.K. support groups I follow that some can get a prescription easily but others have a battle! LovelaceBiggWither Did the antibiotics eradicate the overgrowth completely for you?
Freshstart78 thank you, that’s interesting.
octoberfarm I did try it and it made things worse but maybe I took too much in one go. I do keep reading good things about psyllium.
Acupuncture is something of been contemplating for a while moderationincludingmoderation, good to hear from someone who has had success from it.
BarleySugars so many say kefir helps, I do need to try it.
MrsTerryPratchett I really do need to try keto or at least a very low carb diet. I just need to plan it well as I can not tolerate eggs or dairy so even though it will be quite restrictive for me a reduction in my symptoms would keep me going as that is all I crave right now, to feel well digestively and if that means cutting out my beloved carbs then it’s going to have to be the way. Hopefully, once better I may be able to tolerate the eggs and dairy 🤞

What does it contain kamboozled

I could have written your opening post, same age, same issues.
I also found low carb helped a lot in the beginning but I couldn’t sustain it and now it’s actually worse as I think the weight loss that came with low carbing affected my gallbladder so now I can have dumping of bile which will make my bowels literally flush through with no control. Absolutely horrific if you are not at home (it’s happened once or twice).
I tend to take the dissolvable Imodium, sometimes snapping them in half which is often enough to just slow everything a little.
Anxiety also plays a part, I’m largely fine at home but anywhere I need to go and I know there’s no access to a toilet (wandering around shops usually) the urgency starts immediately and I can easily have an accident. It’s like the fight or flight response kicks in and my bowel just wants to empty.

With regards to eggs and dairy, these are my triggers now after the low carb diet which I did tolerate back then. im also too scared to restart it as I know the first few weeks where I will be eating eggs a lot will no doubt cause the exploding tummy.
I can eat eggs for a few days then boom one day too many and I’m in trouble.
It’s the most difficult thing to manage as some days you eat things and others not. Frustrating!

Bubbles254 I have never taken PPI’s for more than a few days as they upset my lower gut (and even then it was a very long time ago) and as I am aware of the possible long term damage PPI’s could cause I tend to steer clear but sadly that is all my GP will prescribed me for the reflux. It is baffling why the upper gut issues only occur at certain times of the month and only since I’ve been in peri so there must be a strong connection with the hormones but obviously being in peri my levels will be very up and down atm.
Flyhigher All low fodmap foods. Turkey and fish are my main protein sources. Well cooked veg and small amounts of salad. My carbs come from rice, occasional spelt sourdough, potatoes, sweet potatoes, oat cakes.
What do you take?Bimblebore
alliscalm I will def look into that. I need to kill off this SIBO first. Apparently as soon as that has gone then repopulate the good bacteria with probiotics.
Ipadannie I am a member of the group, they have been so helpful. I tested positive for hydrogen SIBO. Good luck with your journey. Are you taking Rifaximin?
Thank you stairgates

I've done keto a few times and one of the first things I notice is that I do not fart. At all. ( and on a normal diet, I'm pretty windy 😞!) I think, with all your terrible symptoms, it's got to be worth a try?

Ultimateactionhero you have my complete and utter empathy. I do worry that keto could mess up my microbiome even more than it has tbh. I have been low fodmap for far too long and I think is a contributing factor to my messed up gut bacteria. Have you had a bile acid malabsorption scan or been offered the bile acid salts, they may help you? I too take the tablet imodium as I find half can just keep things ok(ish) for a day or two but too much and it messes me up and causes all kind of gut woes. It’s like being on a rollercoaster isn’t it? Just never knowing from one day to the other how everything will be.

Appalonia from what I have learned about this SIBO overgrowth is carbs and fibre are their food source and it’s actually the bacteria causing the gas not me, which is weird to think I can fart out gasses which my own body hasn’t produced!

I did try colesevelam powder for a few days but it didnt make a lot of difference. I don’t think the bile issue is continuous, it’s like a dumping problem that happens occasionally.

A gallbladder scan was clear, no stones or sludge.

sorry for the tmi but my stool is almost always a yellow ochre colour. Always this tinge of tan / yellow. GP was dismissive about that but I do feel that whatever is the matter with me is the reason behind the stool colour.

Ultimateactionhero mines the same colour! I’m always concerned something is going on higher up in my digestive system but my gastroenterologist doesn’t seem at all bothered. Doesn’t matter what I eat either.

It was my son who was dx'ed with SIBO. His hydrogen breath test showed he was a non-secretor but his gastro decided he had symptoms and it was worth treating. His symptoms resolved and her care plan was to treat him prophylactically every 6 months. It's the only thing he ever refused to co-operate with (he's intellectually impaired), he's had lots of medical intervention over the years. Vancomycin was not happening!

Yeah it's not a common diagnosis over here either.

I’ve never taken a SIBO test, how would I do this?

Ultimateactionhero I did the Healthpath one it was sent via my local NHS hospital and I did it at home. If you can not get it via the NHS you can pay bia the Healthpath website. There is also one called Smartsibotest and Invivo which are supposed to be good. Although if I were to do it again I will go via a functional doctor as they can interpret the results better and offer more time than an NHS consultant (well, that’s me experience anyhow!).

Are you on HRT?

Just because of your age it really does seem these symptoms have come on with perimenopause.

I suffered terribly from IBS and acid indigestion from my late teens to my early thirties. My GP tried many different drugs over the years and although some medicines helped a lot with the symptoms (Zantac stopped the burning acid pain and buscopan and diazepam helped with the debilitating muscle cramps), nothing actually cured it.

Then, in 2003, I decided to do the Atkins diet to lose a couple of stone as I was feeling a bit frumpy and heavier than I wanted to be. The Atkins diet was a bit of a fad at the time and some of my friends wanted to try it too, so we did it together and agreed that we would all stick exactly to the book, with no cheating. That one decision (completely unrelated to my IBS) to do the Atkins diet literally changed the rest of my life. All my IBS symptoms completely disappeared (as welll as the weight). It was so unexpected and I would never have made the connection. It also completely changed my horrible oily hair and skin, and my always very irregular periods (sometime five or six months between them) were suddenly exactly 28 days apart.

Since then I eat the absolute minimum of carbs and sugar (including fruit), except as an extremely rare treat. I get my carbs from eating vegetables and even keep root vegetables to a minimum (anything that grows underground contains sugar). My IBS symptoms have never returned and in my mid fifties I feel so well and healthy and fulll of energy. And my weight stays stable and my skin and hair has continued to be good, before during and after menopause, which I didn't need to take HRT for.

I know lots of people aren't affected by what they eat, and I don't know why some are and some aren't, but for some reason carbs and sugar seem to create an insulin resistance in some people that has an massive effect on the hormones that regulate digestion and the reproductive cycle.

theduchessofspork I have tried a couple of different hrt but the progesterone side of things exacerbate my gut issues.
MariaMeringue I really do need to drop my carbs. Even though I have tried so many things to help elevate my issues over the years I have always eaten carbs and if I am honest, I am probably addicted to them. I need to look into this further. So many on this post and the support groups I follow all say it helps.

Accordig to google translate:

Usage/Dosage

Please take the following amount with water or warm water after each meal.

age Single dose Number of doses per day
Adult (15 years and older) 3 tablets 3 times

Ingredients/Amount
component Quantity
(out of 9 tablets) work
Live bacteria Natto bacteria powder 10mg It helps the growth of Bifidobacterium, which is good bacteria in the intestines, and has an intestinal regulating effect.
Lactomin (lactic acid bacteria) 30mg It produces lactic acid in the intestines, suppresses the growth of bad bacteria, and has an intestinal regulating effect.
Bifidobacterium 30mg It produces acetic acid and lactic acid in the intestines, suppresses the growth of bad bacteria, and has an intestinal regulating effect.

Antifoaming agent dimethylpolysiloxane 84.6mg This medicine removes gas in the gastrointestinal tract and improves symptoms such as bloating in the stomach and abdomen.

Healthy herbal medicine end of assembly 30mg Enhances the function of a weakened stomach.
End of Keihi 30mg
Fennel end 30mg

Mucosal repair agent Methylmethionine sulfonium chloride (MMSC) 30mg Protects and repairs damaged gastric mucosa.

antacid precipitated calcium carbonate 300mg Neutralizes stomach acid and protects lactic acid bacteria and bifidobacteria that are sensitive to stomach acid.
magnesium hydroxide 300mg
vitamin calcium pantothenate 22.5mg Promotes the growth of good bacteria.

Additives
Ca lactic acid, lactose, hydroxypropyl cellulose, D-sorbitol, cellulose, Ca silicate, silicic anhydride, croscarmellose Na, l-menthol, Mg stearate, potato starch, silicon dioxide

Notes regarding ingredients and quantities:
Contains methylmethionine sulfonium chloride, etc., so it has a unique odor.