I am at breaking point with my horrible digestive issues, I don't know what to do or who to turn to anymore.

[Anothershittydayinparadise]

I feel so lost and alone with this and don't know what to do anymore. My doctors are no longer interested, my family have had enough. This will sound ridiculous to anyone who hasn't suffered from gut issues but I feel broken by it all, it is so relentless.

I was first diagnosed with IBS 27 years ago. Mainly diarrhoea type IBS with occasional constipation (usually mid cycle constipation). During my 30's I could control it well by following the low fodmap diet, avoiding my triggers (dairy, wheat, gluten, artificial sweeteners etc), no alcohol/caffeine (I only drink water), exercise, yoga, meditation and gut directed hypnotherapy. I'd suffer from flare ups around my period and when stressed etc.

However, around 6 years ago my symptoms became almost daily. I have had lots of tests which includes:-

2019 - gastroscope with biopsies for coeliac disease, h pylori, and malignancies etc and a colonoscopy without biopsies as everything looked clear
2022 - A pill camera endoscopy to check my small intestine
2023 - Another colonoscopy but with various biopsies to check for microscopic colitis etc
2023 - a SeCHAT scan for bile acid malabsorption

All of these came back ok but I was still struggling with gas, bloating, nausea, acid, excessive gurgling. flatulence, morning diarrhoea, sometimes constipation etc.

Weirdly I am better in the evening, not always, but often 🤷

But I've been so worked up this last month or so because of a change in my normal habits.
At the beginning of Jan my bowels shifted to very loose stool every single morning (no idea why as I'd not changed a thing), not well formed at all, slimy and a mud-like consistency (sorry if tmi). I have to go as soon as I wake at 7am. This morning I was woken at 5am.

None of my usual 'tricks' are helping.
Usually a couple of days of imodium, or mebeverine or even calcium tablets would fix this but nothing is helping to return to my 'normal'. I even spent a small fortune on a product called Enterosgel which has been supposedly clinically proven to help diarrhoea but it has done nothing to help ease this. This has continued so a couple of weeks ago I went to see my GP, she arranged for stool tests for h pylori, a FIT test, calprotectin and another for bugs/viruses etc but they are all clear so she says there isn't much more she can suggest.
I spoke to my gastroenterologist last week but she's not interested either as all tests appear to be clear although she has prescribed an anti nausea med which I pick up tomorrow from the hospital.

I am at an absolute loss and am miserable. How the hell am I going to fix this? It's controlling my life, I'm barely going out, only to do the absolute necessary things.

I've tried probiotics, kefir (made me worse as I can not tolerate dairy), dropping my carbs (I hate eating just meat and can't afford to tbh as I'm currently not working). I'm listening to my gut directed hypnotherapy at least twice a day, nice and relaxing but it's not helping at all.

What the heck is going on and what can I do to bring some harmony back to my upset digestive system. Can anyone suggest ANYTHING, has anyone had experience of this and managed to feel better and return themselves to a normal rhythm?

Sorry hrft butI have long standing digestive issues with no serious dx.
The only thing that makes a real difference to me is avoiding potato's and products.
Unfortunately potato is hidden in lots of things, but if I'm really pro active and remove it completely, my guts are almost normal.

Not suggesting it's potato for you but lots of people have issues with onion, celery, tomato and obvs gluten, so keep a really structured diary of what you've had.

Good luck, bad guts are miserable, and while people say it's causer by MH issues, IME it's mire likely to be the cause of the MH issues.

I follow Dr Karen Rajan on instagram and he posts some very interesting things about gastrointestinal health and women’s health. In his opinion endometriosis can certainly lead to IBS. I suspect other doctors dispute this because it’s never been shown in studies, but that’s because it’s probably never been studied! Lots of women get period related diarrhoea or gas, and pregnancy is known to affect your digestion due to hormones so it seems pretty self evident that endometriosis could cause digestive issues.

One thing that Dr Rajan wrote recently was about the importance of fibre for both IBS-C and IBS-D. It helps your bowels to work as they are supposed to and clears out waste properly. But you must increase it very gradually and make sure you have plenty of water alongside it. Someone above mentioned psyllium is and that could potentially be very helpful. But start really small and increase very gradually.

Things like bone broth and collagen are also really good for the guts and usually well tolerated. Also exercise can help digestion but as per fibre, start small and increase. Walking and resistance training are very good.

I am.wondering if this could be my issue? I eat potatoes virtually every day. Do you have issues with all nightshade plant foods or just potatoes? I can't eat tomatoes as I end up with awful acid and a sore tongue.

I definitely agree with you on the MH front. On the odd few times that I have a 'good' day I literally feel as though I've won the lottery. The freedom from my gut symptoms leaves me so less anxious and relaxed.

@Anothershittydayinparadise I read your OP and your first few comments - I had the same stools before j was diagnosed with bile acid Malabsorption. I see you have had the test but there was a powder I took which is also for cholesterol and it sorted it right out. It was called Questran.

interestingly after pregnancy and birth it has sorted itself out.

do you get bad wind?

I also have endo in the same area, a bunch of fibroids and ando too.

I started having a few acupuncture sessions at the end of last year but then lost my job and sadly at £60 per session I can't afford to carry on atm. I can't find anyone local who charges less than this.

Whilst it may make no difference to you, I've had quite similar issues albeit not as severe and found a partial solution completely by accident, I took a holiday to India and despite eating really well, all my issues went away by the third day! On returning I've experimented with switching to pretty much a full on Asian diet and most issues have stayed at bay, only returning when I have a western meal! I don't exactly know how it's different so I've recently consulted an Ayurvedic doctor who tells me it's the turmeric that's the cure so to take capsules if I'm not eating Indian food, too soon to tell you if it works, I love Indian food but like many I like variety too!

I follow him too and have his books.
I am fairly certain my endo plays a huge part in this and am quite annoyed my endo gynae is very dismissive over this. He may think it isn't connected but I see many women on the support groups I'm on talk about their gut issues, maybe many are too embarrassed to discuss this with their gynaes or believe it's not connected but I am convinced it plays a big part.

I'm definitely going to try bone broth and collagen as several have recommended it on my thread.

I do walk my dog for over an hour each day, do weights at home and yoga, I would probably be much worse if I didn't exercise.

That’s such a shame. Depending on where you are, you could try to find a school and attend for clinical practice. It’s a very reduced rate usually & fully supervised. You could also ask for a referral to The Royal London Hospital for Integrated Medicine if you’re anywhere near London. As a TCM practitioner, I feel the eastern medical philosophy can be greatly beneficial for digestive issues.

I do think there is someone that. I have signed up for a ibs-d trial. It's trialling a capsule with tumeric, green tea and curcumin.
I was talking to a lady last year who had suffered from colitis and said that since drinking fresh turmeric and ginger tea every morning she has been well for years. She was half Indian a d Saud her grandfather swore by this remedy. I was all ready to buy some fresh turmeric last week then read it is great for constipation which put me off somewhat but maybe I should give it a go.

I'm in North Essex, I have looked around but can't find anything much cheaper sadly.

This sounds so much like my journey, but even Fodmap didn't help. Last year the GP agreed to try me on the medication for Bile Acid Malabsorption without the SehCat scan (just simple cholesterol tablets, Colesevelam) and within a day all of my symptoms stopped. It's been absolutely life changing for me, could you ask your GP to try them too?

OP, in all honestly, I would focus solely on your mental health. From what you've said it sounds very much like this is the the source of your physical problems. Have you read The Body Keeps The Score? Start there and download a free meditation / mindfulness app. Make this a priority for the next month and see what happens.

From everything else you've said / done / all the appointments / supplements / different professionals options etc etc etc it can't make anything worse and I honestly think it will help. You said a few times then when you feel realise your body feels so much better. Focus on the mind, The Body will follow.

'I've tried probiotics, kefir (made me worse as I can not tolerate dairy), dropping my carbs (I hate eating just meat and can't afford to tbh as I'm currently not working).'

Sorry if already mentioned but I'd try the opposite, omit meat and go veggie. Years ago I had on/off IBS type issues, I was having other significant health issues too so it was hard to know what caused what. Anyway I went veggie for ethical as well as digestive issues and I have had 20yrs of a trouble free GI tract! It is bliss and I don't miss meat at all. Worth a try even for a week or 2?

P.s even though HPylori negative did they still try on Metronidazole? Worth asking for as you can just get nonspecific overgrowth of bacteria in your gut that Metronidazole can wipe out.

My gastro did suggest prescribing me them but then I had a clear SeCHAT scan and suddenly she wasn't so keen which is annoying. I'll ask my GP when I see her.

Are you on them permanently or did they help 'reset' things?

I'm on them permanently but there's no side effects. Maybe ask your GP for a week's trial?

Thanks. I have seen this book mentioned a lot on MN, I must get it.

I practice meditation and hypnosis every day but I am still struggling very much with my anxiety. It's such a vicious cycle because the more my digestive system plays up the more I stress and on it goes.....

(TL/DR at the bottom)

Try a gut reset. I've struggled with IBS-D my entire life, but it has improved by at least 75% since Thanksgiving. It had gotten so bad I couldn't leave the house. My gastroenterologist told me about a fairly new medication regimen they were having luck with, and it's worked for me so far. I needed prior authorization from my insurance company for the medicine. I don't know if a GP can prescribe or how things work with NHS.

This is the gut reset:
(NOTE: Fill the prescription ahead of time so you can start at the beginning of the day.)
• Take the antibiotic, Xifaxin, 3 times a day for 14 days. Don't miss a dose.
• NO probiotics or prescription anti-diarrheal medicine.
• NO OTC medicine like Imodium, unless you absolutely have to go somewhere without a restroom. If that happens, take a peremptive half-dose before leaving.
• After Day 14, resume taking a probiotic. A great new one is Visbiome
• Try to avoid anti-diarrhea meds in future.

You might want to google a Reddit on Xifaxin. The success stories I read convinced me to do this, despite the side effects and inconvenience.

Here's the not-so-great part:

Xifaxin will kill off all the bacteria in your gut. The die-off days for me were the 3rd and 4th days. Horrible gas and gurgling, and frequent watery diarrhea. STAY NEAR A BATHROOM!

After that, everything calmed down and I started having normal BMs. Until I missed a dose. Then it was round 2 of the die-off, though it wasn't as bad as the first time. I missed one other dose, and paid the price. I didn't leave the house for most of those 2 weeks.

The first few days after were absolutely great. No painful gas, no diarrhea. I made sure to take a probiotic every day. About the 4th or 5th day, I started having symptoms again. Not horrible, but very loose stools. Someone suggested eating more fiber. Not the kind you mix in water, but something that takes longer to digest. I had baked beans, and they work for me.

Every morning now I eat a small bowl of baked beans. The fiber prevents the loose stool and my stomach is so much happier.

I've had maybe 3 small episodes since finishing the medication 8 weeks ago, but not the gut-wrenching days of agony like before. I've only had to take Imodium 3 times, and one dose was to head off an episode before going out of town.

I don't lose hours of my life in the bathroom, and I'm not replacing the toilet paper (loo roll) 3 times a week anymore. If I have to be on an antibiotic it might trigger the IBS, but hopefully not for long. And my doctor told me a some people may need to repeat the reset a few months down the road. But for me, it's been a small miracle. I just wish I'd been told about it sooner.

TL/DR version:
Gut reset for IBS-D
Xifaxin antibiotic 3x/14 days
NO probiotics, NO diarrhea medicine while taking Xifaxin
Bacteria die-off days were 😕
Stay near the bathroom
After you finish the Xifaxin:
Restart probiotics
(I needed to) Eat baked beans or more fiber every day
Occasional episode, but 75% better (for me)
Avoid diarrhea meds if you can
Possible repeat if it doesn't work well/stops working

I tested positive for SIBO (hydrogen) around 18 months ago.

My NHS gastro won't prescribe me Rifaximin as she doesn't really believe in SIBO as an issue for many people and says people with this overgrowth usually have severe health issues such as diabetes etc. She says the test is not that accurate and gives false positives. I just don't know what to think anymore tbh. A private prescription for it is approx £200 for a two week supply, I am not working atm and so couldn't afford it.

In all honesty, I really don't think I could handle taking rifaximin if those are the side effects. My mental health is shot to bits right now and I have a huge phobia regarding watery diarrhoea and loss of bowel control, the thought of having those side effects brings me into a panic just reading it (silly, I know but years of bad bowels have pushed my anxiety to the limit and triggered some kind of diarhoea phobia which I know sounds crazy to others).

I wish there was a more gentle way to achieve better gut health.

You're not silly at all. If someone fails to understand, they're wrong and it's on them. I think research shows that the gut controls the brain in some aspects, and definitely IBS-D is greatly related to our emotions. Anxiety and stress can tear your stomach up; trying to stretch income and paying the weekly bills was a big trigger for me.

I'm sorry that this treatment is not an option for you. It was rough, but the results were definitely worth it.

I don't know how hard this would be to do, but a more sympathetic gastroenterologist, or one who has more success with SIBO might be a good alternative for you. Getting some control over this would help so much.

I wish you well. ❤

Thank you beenwhereyouare

Hi @Anothershittydayinparadise how are you? I was wondering if any of the tips helped and how you’re doing now?