SIBO/IMO investigations

[skylark15]

Hello, community.

I have a putative diagnosis of SIBO-IMO and would like to know of other people's recent experience of SIBO testing /investigations. Thank you.

I'm new to this forum but have been on HU for many years. I have Lupus, Raynaud's, Erythromelalgia; IBS-c and Muscular Dystrophy (FSHD-1).

I have been struggling with my bowels more and more over many years; constipation, then a few days of loose, stools and real difficulty in trying to keep myself clean-sorry for graphic detail!); abdominal bloating and pain etc etc ie a full house of IBS symptoms. I've been using rectal irrigation but without much if any relief. I have had endoscopies, colonoscopies and many GI physiology tests. I have a "long, loopy bowel" but I believe an otherwise normal colon.

I have been seen by an NHS Dietician, who was helpful a couple of years ago, and who has said she'll guide me through any dietary manipulations that are recommended, although she doesn't have any specialist knowledge of managing SIBO.

I saw a private Gastroenterologist 2/52 ago and was told that I should have a methane/hydrogen breath test done by a Nutritionist (who apparently specialises in SIBO), and an abdo/pelvis CT. I was poised to order the breath test from the Nutritionist when I thought to search on here for others' experience with this and other tests.

It seems that the breath test is less than reliable and that my hopes of a straightforward journey through tests and investigagtion would result in at least a definitive diagnosis and a management plan, with diet advice and/or medication. However, that looks less & less likely now that I've read about the process and the outcome for others.

From xjrs's helpful response to LoobyLoo a couple of months ago, I see that I have a few of the pre-disposing factors for SIBO/IMO, so I will go ahead with the (expensive) breath test and once the result comes through, to me and to the Gastroenterologist, I will take it from there. I am reluctant to see the Nutritionist after reading of people's experiences with these therapists. However, I will have to put it all off until the New Year because a FIT came back as positive last week and I've been referred for an urgent colonoscopy, even though I had a normal in May 2022, and I'll need to wait a minimum of 2 weeks after that, before doing the breath test.

[Luisa22]

Wishing you well with the colonoscopy, Skylark15

Oddly, I was just listening to that beautiful music by Vaughn Williams "Skylark ascending", so maybe that's a good omen?

I understand how SIBO testing can be unreliable. And even if results are found, the treatment can be a bit hit and miss. I can't say with any personal knowledge, but it could be that diet plus herbal regimen might work better long term than expecting it to disappear with a course of antibiotics which are harsh on the system anyway.

Those are only my own thoughts as I haven't gone down that path at all.

xjrs might have some thoughts on this? (SIBO testing et al.)

[skylark15 in reply to Luisa22]

Hi, Luisa22.

Thanks for your kind wishes for the blinking colonoscopy. The last one was extremely painful and I needed another shot of anaesthetic 🫤.

As you can see, xjrs sent a really helpful response, with lots of detail and I'm going to explore all options. I haven't ever taken herbal remedies: my background is in allopathic medicine but those are certainly another area to consider.

Tess

[skylark15 in reply to Luisa22]

That piece of music is sooo lovely. It was in my mind, once I'd chosen my HU handle, but I'm interested in birds, so that played a part in my choice, as well.

[xjrs]

It sounds like you have everything in hand and are aware of the pitfalls of SIBO testing (since these are not accurate, unfortunately).

One question from me is whether probiotics, gradually over a period of time, make your symptoms far far worse. This could be an indicator of SIBO since you are adding bacteria on top of bacteria.

You've probably seen me mention Alflorex multiple times on this forum. A 3 month trial might help you in 2 ways 1) it might help your IBS symptoms (I have IBS-C with pain and it helps me a lot) and 2) if it makes things gradually worse over time (remember that you can get an initial backlash from probiotics until things settle, I'm thinking if things get worse after a settling in period), this may be a SIBO indicator. Perhaps then progress to the breath test if suspicious of SIBO. However, prior to treatment you'd need help with any predisposing factors (if that is possible), to try to keep the SIBO under control in future. A trial of Rifaximin might be in order (for hydrogen SIBO). I believe that this is limited to the small intestine. Unfortunately you may need a private prescription and it is extremely expensive. If the SIBO is methane based there is Neomycin antibiotic (but this is probably a more broad spectrum antibiotic). If a round of Rifaximin doesn't help at all - I would stop there. My mistake was to be under the guidance of nutritional therapists. Even though Rifaximin did nothing for me they continued to destroy my microbiome with natural antimicrobials etc. All of this made my IBS-C worse (since much of stool is made up of bacteria) and made me very ill. I now have to eat far far more fibre to have a BM.

Have you also seen any of my posts on handling IBS-C? This includes diet plus I am taking Linaclotide which helps with the pain (in addition to Alflorex). I can post this here if you want.

[skylark15 in reply to xjrs]

Hi, xjrs.

Thank you so much for such a lot of useful advice, which I will certainly heed. I have only just learned that SIBO may be part of my long-standing bowel problems, so I'm just embarking on the journey of discovery, investigations and possible management options.

In the 1970s I had an almost Damascene conversion, when I read Dr Andrew Stanway's book 'Taking the Rough with the Smooth', and I changed my diet completely, to (very) high fibre, which certainly seemed to help with the chronic constipation. However, that has become much worse over the last couple of years, without any big changes in my diet. I've been very wary of laxatives because of the unpredictable and varied, chaotic gut response to them.

Over the years I've relaxed that very high fibre diet but I still eat a mostly vegetarian diet, with masses of fruit & veg. but also dairy. For breakfast, I usually have whole oats ( the Zoe effect!) with nuts, seeds, spices and kefir or natural, plain, whole milk yogurt, so yes, I've taken a probiotic regularly for years. As for does that make the abdo distension/pain, wind and intractable constipation worse, I don't know, because I've never tried without the yogurt/kefir for any length of time. Zoe rejected me for their glucose monitoring programme, because of my chronic and as yet unidentified bowel problems...

I've looked at FODmap regimes and backed away, because they seem so restrictive and "anti-social". Maybe I should knuckle down and give that a trial, and only then think about SIBO testing, to see if the symptoms improve. It would mean cutting out dairy, including the yogurt 😒.

As for management/treatment of my predisposing conditions; there is no treatment for the MD and my lupus is controlled with Hydroxychloroquine twice daily and an antihistamine at night to dampen down the skin element of lupus. Of the other conditions, I take Losartan for the Raynaud's; Pregabalin, Nortriptyline and Paracetamol for the (terrible) pain of Erythromelalgia; 800iu of Vitamin D and Hiprex to help prevent recurrent UTIs. Phew!

I have just found a section on the management and treatment of SIBO on the website of The London Gastroenteroly Centre. It looks pretty thorough and approaches it in a logical, very comprehensive, step-wise manner. Interesting.

I haven't yet read your posts specifically on handling IBS-C, but I will do so with great interest. Thanks again.

Tess

[Luisa22]

As xjrs mentioned, predisposing factors count for a lot. Somewhere on this forum, xjrs posted a good list of all those possible predisposing factors. I just can't find it !!

If I try to remember, I will forget a lot of them and give the wrong impression. But I do remember a few at least: one is high blood sugar (whether out-and-out diabetes or not). another is antibiotic use (i.e. cast your mind back, and did your gut start to feel iffy after a course of antibiotics for something else?) The more frequently a course of antibiotics had to be taken, the more likely that can predispose someone to SIBO.

But those aren't all, and there are a number of possible causes.

If you're in the UK you are unlikely to be prescribed Rifaximin, though you can ask! NHS pretend they have never heard of it, and you're likely to be prescribed something else, like Amoxicillin which operates totally differently.

Werid isn't it, that antibiotic use can predispose towards developing SIBO, yet ordinary "average" antibiotics would be used in the UK instead of Rifaximin which is targeted specifically for the gut I think?

It's only hearsay on my part but I have heard that the low FODMAP diet can ease symptoms of SIBO, but as far as I know it's not a cure.

Low FODMAP or any diet restrictions are definitely a bit antisocial, and though I did the trial of that for 8 weeks, I also found that a lot of the low FODMAP foods didn't suit me from the start, and a few on the "high" list never caused me any problems, including gluten, and apparently fructose -as I can happily eat honey, though struggle with fruit.

Plus it's best to do it with a dietician (and the re-introduction phase.)

I didn't have the good fortune for that, as I did the low Fodmap trial and re-introduction slap bang in the middle of 2020, Covid pandemic, everywhere deserted, lucky to even get one doctor's appointment!

But it is certainly recommendedto have a dietician. And taking vitamin and mineral supplements is probably wise while on it....if you do decide to give it a go.

[skylark15 in reply to Luisa22]

Thanks, Luisa22. I expect xjrs will tell you where to find that list: I found it really helpful, if rather disheartening, as I have so many of the predispositions on there.