Has anyone successfully controlled their IBS (diarrhoea type)

[MoanyMcMoanington]

I have had IBS for decades but it's getting worse as I age.

I have had many tests (cameras up and down, scans, biopsies etc) and all ok. Gastro says it's 'just' IBS and sadly it's something I have to learn to live with (I don't know what she thinks I've been trying to do these last 25 years but ok).

No amount of low fodmapping, carefully avoiding my trigger foods, not touching alcohol or caffeine and leading aa healthy a lifestyle as I can seems to help to control my gurgling and unsettled gut. I experience loose stool every day (some days looser than others and no idea why that happens). Medication hasn't helped and I've tried many including Imodium which seems to be the only given advice for loose stool but that doesn't help me at all it just slows everything down yet I still have loose stool.

It's really depressing to think all these years trying to live with this and that this is my life, always watching what I eat, urgency every damn morning, never knowing when I might need to suddenly go, hardly socialising as a result. I know it's not seen as a serious issue by most health professionals but it's really depressing, I've had to give up work recently as a result.

Has anyone successfully controlled or even eliminated their gut problems?

I really feel for you, stomach problems have also ruled my life since I was a child. I finally got diagnosed with BAM and now taking meds and it's helped and changed my life. Amitriptyline also really helped. I would try the meds and see if it helps.

I have IBS and lymphocytic colitis. When I was diagnosed with LC, my GI consultant put me on cholestyramine tablets (also called Cholestagel), mainly for the IBS symptoms.

He says that a lot of IBS sufferers have a problem with bile reabsorption - the bile is secreted from the liver, into the small intestine (to help with digestion there) and is reabsorbed by the small intestine, before it reaches the large intestine. If, for whatever reason, this doesn't happen, the bile acid reaches the large intestine where it causes irritation and inflammation, leading to the diarrhoea. He believes that, in many IBS sufferers, this is at least part of what causes their symptoms.

The cholestyramine binds to the bile acid, so that when it reaches the large intestine, it can't do any harm. He said it might not stop all the symptoms, but should make things better. In my case, I still have the lymphocytic colitis, which will also cause similar problems to IBS, but even if I just has IBS, he said it wouldn't make it all go away, but would improve things. He recommends it for all his IBS patients.

I have been on this for years now, and whilst it hasn't sorted out the problems completely, it really has made a massive difference. The diarrhoea is much more of an occasional problem rather than a daily reality.

Did your GP run a test for TPO - thyroid antibodies?

I ask because I too suffer with IBS-D, started about 7-8 years ago, and perhaps even before that before symptoms became very obvious. I was given loads of tests, colonoscopies etc and kept being told my thyroid results were with in range, but being in range doesn’t mean symptom free! After years a house move forced a change of doctors and this time they did a full thyroid panel, helped that my thyroid results were just slightly out of range, but the antibody test was positive and so confirmed Hashimotos Thyroiditis. I’ve since been medicated and while my IBS isn’t perfect it is very much improved. I still carry Imodium with me everywhere but very rarely need to use it, and I took it daily for a long time.

I had also previously done all the low FODMAP stuff, there are triggers I can identify like I can’t eat a salad/lettuce/root veg etc, avoiding foods didn’t really make enough change and neither did being gluten free. Pre-biotics, pro-biotics, digestive enzyme tablets, lactase tablets, anti histamines etc….there isn’t much I haven’t tried, and none of any of that made much difference at all. Until the Thyroid diagnosis, so I much recommend pushing your GP for the antibody test.

Wow, that sounds fantastic. Do you remember the name or what strain of bacteria it contained?

I totally sympathise, it completely overwhelms my life.

My gastro was going to prescribe me the Cholestyramine but when my SeCHAT s an came back clear she never mentioned it again.
Perhaps I should contact her and see if she would prescribe it.

They just tested my serum tsh and serum free T4. I have a GP appointment tomorrow so I'll ask him about it.
Do thyroid issues run in families? I have several family members with thyroid problems.

It makes me sleepy so I take it about 30 mins before bed and a dry mouth the next morning so I just drink more. Haven’t had any other side effects

Psyllium husk can work for both ibs-c and ibs-d, see the explanation in the link, go right to the end of the article. You can buy psyllium husk in bags from any health food shop rather than capsules, it's quite cheap, that way you can start off just using half a tea spoon in water over a few days and increase if well tolerated.
https://www.theguthealthdoctor.com/pills-to-pop-or-not
I know the article says start with half a tablespoon but you can try a smaller amount like I suggested if you are nervous about trying it.

Have you tried this?
https://www.amazon.co.uk/Enterosgel-IBS-Relief-Gel-Intestinal/dp/B015R4G9RG/ref=sr_1_1_sspa?crid=1GL1YSJ1XQXSG&dib=eyJ2IjoiMSJ9.I0RZr2imskX30uF1C3UH0ABlVMRGuRJP6bU5dldPKgzk1EDNRJEdIpVMAhwxXaSCd5z79a01jwoN4mG1ePhNkuJhq2MvoljX7EkAdO2_3TyV2aOqAZndP0lGOGAvMhQv0t18f9Bkd1eXhOi7dwNjdxCTT-w193er7JYb6LxateGfUMVPIPEa3sKUrlv2ptyF3F5GLsRvx1frIYHX_6Hfki4I7fMbW40fCnN24rW1wfHCMWy00NtreC4Xt2ccXsnH8KfZaseZI5m82m7ql4ZGboBn2DbSizYfzqXxlII1gtY.9Y5RsCPlV3L_cy9hsPcvsFbJPRW4Co2KHtjMat1tz-E&dib_tag=se&keywords=enterosgel&nsdOptOutParam=true&qid=1736251587&sprefix=Ent%2Caps%2C193&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1
My adult son uses this to control his IBS.
Like you, he has tried everything else. We were fortunate enough to live in the same health authority as Professor Peter Whorwel so he really has been treated by the experts for IBS.
Enterosgel is the only treatment that has worked and was recommended by his friend who is a doctor in Italy.

If you want a success story watch this on YouTube,
Carnivore Diet for Inflammatory Bowel Disease: New Source of Hope? With Nick Norwitz, PhD

The guy being interviewed is in training to be a doctor and cured his own IBS via diet.

I have tried this several times but sadly it's never helped.
I would have loved to have consulted with Prof Whorwel, I had followed him for years, he comes across as a very caring gastro who really has sympathy for his IBS patients.

I take 4 imodium every other day. Ill take more if I have to but usually 4 does it. It only lasts 24 hours but takes another day to speed up again mostly.

Have you been tested for Coeliac Disease?

I have, several times via blood test and again via biopsy when I had a gastroscope.

Initially I went dairy, egg, soya, gluten free and it helped. Came back with a vengeance after a couple of years where I would soil myself & couldn't leave the house after eating. Combined the free from diet with IBS dietician advice ...

Eat at regular times
No processed food, no reheating of food either
Continued dairy & egg free
Dietician suggested I reintroduce gluten which I did & it settled it.

For the first time in 10 years my bloods showed coeliac disease. Waiting on repeat bloods.

The biggest impact has been the mounjaro weight loss injection, so far no IBS issues, even with eating gluten!

It's amazing that Mounjaro seems to be helping so many people with bowel issues. I know quite a few people now how says it's transformed there gut problems.

So were you completely gf when you were recently tested for coeliac disease? Had you been tested before? I ask as I've had 2 blood tests in the past and a stomach lining biopsy which all came back as negative and I was eating gluten at the time as my gastro told me I needed to consume it for at least 6 weeks prior to testing. I'd really like to do a blood test again but as I'm gf I'd worry about false results.

Yes I kept a ridiculously detailed food diary. Including all ingredients not just " writing spag bol or Shepards pie I wrote all the ingredients from the sauces etc. Worked out I'm allergic to rapeseed and it's in nearly every sauce and most processed foods. Even when I was cooking basically from scratch it was in high quality expensive sauces or some breads. And I don't react just the day I eat it I can take a few days to recover so initially the food diary didn't show the problem. i had to be hugely restricted in my diet before i saw improvements and introduced ingredients incredibly slowly to work out what I was reacting to. Years I was dismissed as just having IBS. I would do a very detailed food diary and start removing from your diet anything processed or pre made with lots of ingredients give it a month or two and see if that helps then introduce things and see what happens.

No time to read whole thread but the only thing that works for me is Enterosgel - expensive but works brilliantly. Plus good quality probiotics. My consultant said the fact that Enterosgel worked SO well for me pointed to possible bile acid malabsorption so he agreed to test for that and it came up as positive. I'm now on colesevelam as well as imodium, enterosgel and probiotics, and all in all it's pretty well controlled now. I really hope some of this helps. X

I have kept a food diary for the last 5 years but just can not see a connection apart from my obvious trigger foods etc. I do tend to break down the ingredients but I am still struggling. I often say that I could eat dust and still have symptoms!
I don't eat a lot of processed foods tbh but I may need to go down to meat/fish and basic veg and slowly introduce.

Thank you, do you have BAM? My gastro did say that she could prescribe me Cholestyramine then change over to Colesevelam which she said was easier to take but then I had a clear SeCHAT scan and it was never mentioned again. I am not sure if this med is given to non-BAM sufferer's?

I have tried enterosgel (and silicolgel), several times. I did the 21 day re-set Enterosgsel recommends but all it did was burn a hole in my pocket, that stuff is so very expensive.

Can I ask which probiotics you take?

Yes, I do have BAM (took 30 years of problems to get the test and before that I was always just shrugged at and told 'IBS, deal with it').

I take Optibac probiotics but have had others over the years, all the good quality ones have helped. Optibac do an every day one (and every day Extra, which is a higher concentration), and another one which is saccaromyces boulardii which used to be called "for bowel calm" as it's targeted at that but now is just labelled with the name of the bacteria. That one is really helpful, I take an everyday one each day plus one of the S Boulardii when I feel I need it.

As a student I was recommended slippery elm powder by a health food shop which also worked well.

Thank you, I have the Optibac S.Boulaudii, really need to trial that.
I also have slippery elm but it's the traditional Thompson's one (my nan used to use for a dodgy tum:and she swore by the stuff), I haven't taken it as I went gf and it contains gluten but I really should go and get the capsules.

Got to be worth a try, especially if you already have them in stock x

I’ve found this thread very helpful and interesting. My symptoms started after surgery for gallstones, about 25 years ago. Didn’t bother me much at first but the last ten years or so have been pretty horrendous and I’ve felt very alone with this. However, lots of ideas to look into and for that I thank you all.

And to the original poster - thanks for starting this thread,