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.

Have you tried one of those blood tests for intolerances/allergies. Some do over 200 things they check for. Think you have to go private.

Augustus40 I did do the York Test out of desperation, it flared up the foods I already avoid so in that way it was accurate but several years on avoiding those foods Im still experiencing symptoms. Often, I’m not sure it’s even food triggered tbh.

If you can afford to throw money at it, I would suggest seeing a functional doctor. Very expensive though, although if you tell them you're on a budget it might help.

Your symptoms sound identical to mine right down to your age and the slight appease towards the end of your cycle. Thank you as I feel you have saved me from bothering with all the endless tests as I can't help but feel I'd get the same result.

It is incredibly frustrating. Wish I had some advice but solidarity OP 💐

Same crap here. And I am almost 7 years postmenopause so it could be something else other than hormones. Do you feel any pain in your stomach/ bowels?

What are you eating for breakfast? If your bloating and wind is starting early teatime it suggests it might be something you've eaten earlier in the day. Have you tried cutting out wheat/gluten?
It's so hard to pinpoint problems, it could be something as small as an additive in something, a sweetener, preservative, flavouring, fruit sugar, or a combination of foods together. Also whilst Fodmap can be helpful, a safe food may not agree with you personally so that's worth considering.

This is very left-field, but it worked for me after years of trying other things: find a highly recommended Ayurvedic practitioner and make an appointment. You will probably get put on what is called a "Vata pacifying diet", which is entirely counter-intuitive, but it restored my bowel functioning within a month. Life changing!

ArtyStripedSocks Tbh, I really can not afford to see one but I am very much considering taking out a small loan or credit card to pay to see one as I am finding myself in a one step forward two back scenario these last 5 years. The sticking point is actually finding a functional doctor who has a decent reputation and will actually help (unlike the nutritionist who charged me £250 only to tell me I’d be cured within a month if I eat 10 vegetables per day!).

I honestly have nothing but empathy for you Paddestow Azaleah if I ever find anything which helps, I will let you both know. Azaleah, yes, I do get a lot of pain, especially with the bloating.

Blossomandbee In all honesty, I feel so nauseated in the mornings and with the upset tummy that I simple can not face breakfast so usually won’t eat until at least 10am. I am so careful with the foods I consume, I avoid all artificial sweeteners and sugar in general. The weird thing is that when I have the 2 or 3 ‘good’ days per month I am eating the same foods as I have the rest of the month. I honestly wonder if it’s not food related, I feel that I could eat the same foods every day and still have varying symptoms. I have kept a food dairy these last 5 years and can not see an correlation between the foods and my issues. Unless I am totally missing something?

CeciNestPasUnPipi thank you, I am willing to try anything at this point.

@Handcreamqueen I don't have nausea early morning but I don't get hungry until 10-11 am. Hmmm 🤔

A bit of a tangent. But given your age and suspicion that hormones may be involved, have you thought about HRT?
My reflux was lots better whilst I was on HRT and now that I'm on a break from HRT, it's come back again.

MorvernBlack I have tried hrt but found the progesterone part made the digestive issues worse. I feel that I need to try again but my GP is pretty useless when it comes to HRT, I may need to also see a menopause specialist because I have had years of gynae issues and had a uterine ablation last year which sadly has resulted in post ablation failure. I tried the HRT before the ablation and now worry that hrt could causing bleeding (the blood would have nowhere to escape and cause me even more issues 😩)

@Handcreamqueen I'm hopeless at this, but if I can work out how to DM I can recommend someone

Hi OP, complete shot in the dark, have you looked into a fecal transplant (sorry ...)

Hi OP. I have IBS and IBD so slightly different. But, since I started taking L.Plantarum, my symptoms have reduced massively. I’ve even been able to come down on my IBD meds. The easiest way to try it is a drink called Biomel, available at Sainsbury’s. It’s a very small bottle so look out for it. There’s research on the benefits of this particular probiotic although I can’t remember if it’s more for IBS or IBD. Definitely check it out as a super easy thing to try - it changed my life, literally.

ArtyStripedSocks Ah fab, that would be very much appreciated, thanks.
SeulementUneFois I have been reading up about that recently.
pear6782 wow! That’s really encouraging. I have tried Biomel a few times but in all honesty just a bottle here and there. How long before you saw an improvement?

I have an immodium every night. Then I go to the loo once in the morning instead of five times.
I've given up trying to work it out. Food I can eat one day I can't eat on another. I'm 51 and it's definitely not helped by hormones.

I've had GI issues for over 25 years, lactose intolerance, Gerd and IBS so top to bottom. What worked for me was a PPI, super lactase enzymes (so I can digest dairy and you can get online etc) and a dose of imodium instants (well the generic ones) on the days I'm leaving the house, it slows everything down so I've no urgency and everything is one movement at the end of the day. If I was you I'd stick with the buscopan for the other symptoms and see how you go.
I've got a bunch of other ailments that really affect my mobility but this is something I no longer worry about as I've hit a happy medium.
Good luck and keep tweaking what you're already doing.

Try the bone broth diet and drinking bone broth as part of your daily diet. It’s known to heal the gut and worth a shot if you haven’t tried it before.

Kimchi helped me SO much. The first time I passed a solid stool I nearly cried with joy! Even a couple of days off it and I’m back to square one, I find. I still suffer if I eat more than a tiny bit of leafy veg, but I’m no longer scared to leave the house in case I shit myself!

No advice but I'm following because I'm in a similar situation.
I've been struggling since I was 15 and am now 43. It just gets worse year on year. PPIs do nothing.
I had a gastroscopy 2 years ago which showed nothing and I've got another one in 2 weeks.

I've DM'd. Good luck,

It’s a bit extreme but the only time and I do mean the only time I am symptom free from IBS is when I eat a keto diet. It makes no sense to me because it flies in the face of every bit of medical advice I have been given but it works without fail every time. I have tried everything, probiotics, supplements, bloody yoga, the lot.
Might be worth you giving it a go and reintroduce other foods one at a time to give some idea of what is causing the worst of the symptoms.

You need to see a functional medicine practitioner who can have tests done via a company like Invivo clinical and then advise how to treat the specifics of your sibo & any other issues.

Btw I had all the nhs tests for my digestive issues and they found nothing. Invibo clinical found two serious parasites, one tropical that needed very strong antibiotics.

I can suggest an amazing functional med person if you DM me. Or Google locally.

How did they diagnose the parasites?