Reaching out to other sufferers

[Letsfixit1]

Hi, first time here. I'm feeling disheartened that despite all my efforts, my IBSd is getting no better. And I'm baffled as to what to do next. I've recently been diagnosed with osteoporosis despite having an active and healthy lifestyle and I suspect this may have been caused by restrictive diets. In 2017 a consultant recommended taking loperamide and possibly psyllium husk daily which worked brilliantly for about 3 months. Unfortunately I soon found I had to increase the dose and like any drug it has side effects.

I have tried a 6 months hypnotherapy course which made no difference. I'm sure it's not stress. I can have an unexpected attack whilst relaxing reading a book.

I've tried the fodmap diet, cutting all the triggers, nothing works.

And I don't understand why I can eat the same food on several occasions, and get no reaction, then suddenly it's a problem.

I'm wondering if it is the food to blame, or should I be looking for a physical cause? And is it worth investing in dieticians and some of the expensive tests like SIBO?

There's some very interesting posts on here, and information. I'm glad I've joined, thanks.

[Luisa22]

I hear you. I also was diagnosed with IBS D, though sometimes mine can flip over to the other side for a couple of days (constipation) which is generally easily relieved by eating a couple of usually "forbidden foods" with more fibre!

But I hear you about IBS being hard to get a grip on -to find out what the triggers are. Have you tried the low Fodmap diet? You probably have but I was just wondering. I tried it for the 8 weeks and so many low Fodmap foods didn't suit me anyway. I also discovered I am NOT gluten or sugar sensitive. Not quite sure about lactose. I ate a large amount of "spray cream" once and was fine after it, and can eat butter, but cheese is a bit dodgy at times and I never use milk anyway. So the jury's out on that.

I gained only a small percentage of help from it but it was worth trialling for sure.

And I also can't necessarily link stress with my IBS either. I have had IBS flares at really calm times of my life, and in high stress situations have been normal on the loo! Yet sometimes stress has floored me with a bad tummy. So that's not definite as a culprit.

And as for food....sometimes I can happily eat certain foods, and at other times randomly, a certain food appears to upset my tummy. I am talking about plain bland foods, not anything spicy etc. Yet I don't always know if it was the food, or an IBS flare that was destined to happen anyway!

And sometimes I have eaten very very bland "safe" foods which I can usually 100% rely on to calm my belly, and still had a flare up anyway!

I have had some help...quite good help actually -from homeopathic treatments but nothing magical, and it was slow and gradual. But I do get far fewer flares now and have been able to extend my diet generally.

And the rest of the time I do a kind of dance with fibre. Sometimes I can have more, and sometimes a bit less, and I monitor that day by day.

But bottom line is that I have greatly simplified my diet to much plainer but healthy foods and that's helped a lot. And I have learned that some foods have to be restricted somewhat: (beans, lentils, fruits, dried fruits, high fibre foods like brown rice, quinoa, granola, root vegetables, etc) I can have some, sometimes, but have to be a bit careful with those and not go overboard or have them too frequently.

[xjrs]

I have some general advice about what to try for IBS in a previous post of mine, some of which you have tried already:

healthunlocked.com/theibsne...

Once you have tried all of those things, it is worth having a chat with your GP about BAM (bile acid malabsorption). There is a separate test and treatment for it.

SIBO is a tough one. The tests for it aren't accurate. Please DO NOT try any 'Nutritional Therapists'. I have very broad experience of their practices and quite frankly they are not qualified to treat people. Many of the courses they go on only require basic English and Maths as prerequisites. What they are dealing with requires a degree in microbiology and proper formal medical training, which they don't have. I was completely fleeced by these people (adding up to £1000s) and they made my condition far far worse. It is a money making machine. They are not recognised by the NHS.

If the question over BAM, comes to a negative, asked to be referred to a NHS dietician to ensure that you've followed the FODMAP elimination and reintroduction diet correctly (unless you've done this already). However, I cannot stress enough to take a very well studied probiotic like Alflorex first, since it can increase food tolerance.

Failing all of that ask to be referred to a gastroenterologist saying that you've tried all the usual IBS remedies (and a BAM test) and you are still having issues. It is best for you to discuss the possibility of SIBO with them, than anyone else. If SIBO is suspected, you can only have it if you have one of its predisposing factors, the list is below and can be worked through with your GP or a gastro. If you have one of these factors, that will need treating first, otherwise it will keep coming back. Beyond that a trial of Rifaximin might be in order to see if you get any benefit, which might help to act as a diagnosis. However, it seems to be hit and miss with different NHS trusts as to whether they recommend or can even prescribe it.

Here is the SIBO cause list:

Note that the first four causes of SIBO in the list below should be identifiable through a small bowel MRI scan:

Stasis: dysmotility – problems with muscle contraction in the gastrointestinal tract

Surgery (loops, vagotomy, bariatric)

Short Bowel Syndrome

Stuck open ileocecal valve (which sits between the small and large intestine) allowing bacteria from the large intestine to flow back into the small intestine

Achlorhydria – no stomach acid – unlikely if you can experience acid reflux. Additionally a faecal elastase test would show if you aren’t breaking down proteins correctly (which require stomach acid for digestion)

Hypochlohydria – low stomach acid – see above – the only real test is a PH test directly into your stomach, but many practices do not carry this out and home testing is inaccurate

PPIs – proton pump inhibitors for GERD/acid reflux – this is particularly related to long term use

Malnutrition – excess bacteria in the small intestine can compete for nutrients that your body needs

Collagen vascular disease – immune system inflammation e.g. arthritis

Immune deficiency

Advancing Age

Chronic Pancreatitis – this causes constant abdominal pain/fatty stools

Chronic antibiotic use

IgA Deficiency – identified from GP blood tests

Coeliac Disease – identified from GP blood tests

Crohn’s Disease – identified through GP tests and colonoscopy if GP tests indicate referral is needed

NASH – non alcoholic fatty liver disease –identified from GP blood tests

Cirrhosis

Fibromyalgia – widespread pain

Rosacea

[Letsfixit1 in reply to xjrs]

Wow that is so helpful, so much information. I feel less helpless today and you've given me some positive steps to take. I had doubts about SIBO and the dietician "experts" which I suspected could run into thousands. And I will definitely try that Alflorex which I've never heard of. I will go through your previous posts carefully on that link. Many thanks.

[Superzob in reply to Letsfixit1]

I’ve tried Alflorex, and found it very helpful, but it can take some months to work, so you need to stick at it. It also made me quite constipated after a couple of months, but that seems to have improved (don’t do what I did and stop taking it or reduce the dose - it doesn’t colonise the gut and the effect wears off in 2-3 weeks). But this is IBS, it can change of its own accord without obvious reason, and anything you take to help is more about management than cure. But whatever you try, I hope you get an improvement.

[Letsfixit1 in reply to Superzob]

Many thanks, I will try it

[Boofers]

I feel for you SO MUCH! ibs is so random - I too can get an attack on a calm day, a day when I've eaten all the safe foods, suddenly out of nowhere - it's so frustrating. Particularly when you eat something one day and it's fine, you eat it on another day and get a sudden flare up. I used the Fodmap diet to find out what I can't eat and I have the app so I can check everything, but it still happens. 90% of my life seems to be spent obsessing about food and my gut. It's no way to live. I don't have anything to add, really, except to say I sympathise with you a great deal - I hope you can get some help and rest from the symptoms!

[Harold2]

have been the same loose stools then normal for a few days have narrowed it down to chocolate have cut down on it and symptoms seem a bit better fingers crossed.