SIBO recognised at last

[ramblingplomer]

I have suffered with IBS all my life, however almost 4 years ago I developed at set of different symptoms which progressed into faecal incontinence. My visits to GP led to a diagnosis of IBS and I was sent for colonoscopy and endoscopy to rule out cancer. Gerd, extensive atrophic gastritis, diverticular, and polyps were found. I was prescribed PPIs and had polyps removed. Also after a year of suffering I begged for a test for H-Pylori, and it came back positive. The antibiotic treatment for that removed my symptoms for approx 1 month. Thereafter, my visits to GP were fruitless, being told to use laxatives and wear pads!.

Over the next 2 years my condition was so distressing that I self referred to both physio and the incontinence clinic. Working with them, I understood pelvic floor muscles and discovered Fodmap. During this time I also researched many gastrological functions and conditions. Exasperated with being unable to get to the cause of my condition, I begged the GP to refer me to a gastoenterologist. It was 6 months before I heard from the hospital with an appointment and I had almost given up hope.

The consultant recommended to firstly repeat the laxative treatment ,(which only exasperated the problem as before,) but also suggested that it maybe SIBO and that a course of Rifaximin should be the next step. Eureka!...although my GP was reluctant to prescribe it, I was back to a comfortable digestive system and normal bowel movements for the first time in over 3 years. That was 5 months ago and I haven't looked back. I am now hoping that this condition has been resolved for good, but I have read that it can return, depending on the original cause.

I live in Portsmouth, so for the others reading this blog, you will be encouraged to know that there is a gastroenterologist who recognises SiBO working in this area.

So do not give up!

[Huston]

Eureka indeed .My GP did not seem to know what SIBO was ! Have since changed my GP but now met with sceptisism when I have asked to be referred for SIBO tests .Over the years have had every other kind of test imaginable ,all negative . So why this reluctance concerning SIBO ?

[ramblingplomer in reply to Huston]

I have researched articles on-line for bacterial overgrowth for over a year now, and it appears that the UK is only just beginning to take it seriously as a health issue. I don't think that GPs have ever been educated about this condition. It is probably only a few conscientious consultants who have bothered to read the the latest papers on gastric functional problems. IBS has been a convenient "catchall" diagnosis for a number of gastric conditions which are not properly understood.

Unfortunately the "tick-box" payment culture only encourages early diagnosis of cancer and other conditions are ignored by default. The financial restrictions within which the NHS now operates are unlikely to help this situation.

[Huston in reply to ramblingplomer]

I did mention My desire to have a SIBO test to a consultant Gastro when I had been referred for further investigations after diagnosis of Hiatus Hernia plus ,Diverticulitis leading to or as the result of Long term IBSC .His response was that SIBO presents as IBSD and since I was IBSC it was not appropriate .That was a few years ago now and since then I have read somewhere that SIBO could lead to both IBSC as well as IBSD .Have you come across the same opinion in your research ? If so I will try again with my Sceptical GP to get a referral !

[Jenny3267 in reply to Huston]

I agree. Why do gastros jump to so many invasive tests and refuse to do the simple stuff. Someone else posted they think there’s more profit in the prior.

[ramblingplomer]

I tried a diplomatic request for a Gastro referral by saying ...."I don't expect you to know everything about this as a GP, because you have to know about all the other ailments people suffer, so please refer me to someone who specialises in this area". It took over 6 months but I got what I needed.

[Pat645]

I took the Rifaxin for SIBO a few years ago. It did work for a few months, but my symptoms still came back. Unfortunately, it does not always work permanently. Sometimes it takes more than one course of the medicine. And even then they do not guarantee a permanent solution.

[ramblingplomer in reply to Pat645]

Yes I have read that it can come back depending on the original underlying cause. I have heard that a severe gastric infection left untreated, although it appears to have resolved itself, can be a trigger to the overgrowth. Poor motility can also be a cause. I am keeping my fingers crossed that it does not return. I am glad that this new blog is up and running so that we can share our problems and hopefully find ways of coping with what can be a totally devastating condition.

[claire_louise]

So pleased for you, but disgusted at how you were treated! My GP likewise had never heard of SIBO and I had to get my consultant to write to him before he would agree to refer me for the test. SIBO absolutely CAN present as IBSC. My test came back negative but I've since had a stools analysis done which discovered a different type of bacterial overgrowth (along with lots of other problems), so I was on the right lines. Just goes to show that you should always listen to your instincts - it's YOUR body after all.

[Eternity78 in reply to claire_louise]

@claire_louise may i ask what medication you took after discovering the other bacterial overgrowth ?? was it a specific type of antibiotic ??

[claire_louise in reply to Eternity78]

Hi, no I'm not on antibiotics as it isn't SIBO, it's a different type of bacteria. I'm on a comprehensive programme (supplements and diet changes) as I have various nasties going on, including parasites and yeast infections. Definitely worth checking out if you can afford to.

[claire_louise in reply to claire_louise]

Should have added that this all came from a nutritional therapist, not the NHS who are useless.

[Eternity78 in reply to claire_louise]

Thank you for your reply 🌹 ..do you recommand any special tests for those abnormalities ??

[claire_louise in reply to Eternity78]

I'd recommend seeing a qualified nutritional therapist who should be able to advise you. I had something called a 3 Day Comprehensive Stool Analysis, which tests for a myriad of things in your gut. The nutritionist would then be able to draw up a programme for you based on the results.

[Eternity78 in reply to claire_louise]

Thank you ..i'll check this out 👍

[Jenny3267 in reply to claire_louise]

Are you in the UK? Could you share which nutritionist you used and are you recovered now?

[ronij]

The gastro doctor that did my colonoscopy and endoscopy (which revealed nothing) says I have post infectious SIBO after semonella 8 months ago. My bowel has not been normal since. I said to her should I get tested for it - she said it was a complete waste of time cos it doesn't always show up and it gives false positives and negatives. In her words - a waste of money. I'm on the fodmap diet (note sibo fodmap is different to the normal fodmap) and use Normafibre for bulking stools. I went to the chemist to find that there's sucralose in it which is not recommended for SIBO so i never took it. I'm just accepting my condition of small pieces in my motions and try and deal with it. I also had no appetite - lost so much weight from the semonella and the diet. I've decided to add back some foods in cos I couldn't sustain this low fodmap (special carb diet) as I was continuing to loose weight.

Glad that the medication has helped. Goodluck with the future.

[Jenny3267 in reply to ronij]

How are you doing now? I am also struggling very badly with SIBO with constipation and lost so much weight so SIBO diets hard to follow. But if add in fibre get severe bloating.

[Hidden]

Well done to you for your persistence but absolutely disgusting that you weren't listened to, you do know your own body and when things aren't right. What an awful thing to suffer from and so so embarrassing. This condition is embarrassing enough without having no control over going to the toilet.

I, like you, am so glad that there is a forum like this where everyone understands each other. My IBS (mainly C) started after a bout of Salmonella back in 1996, I could eat absolutely anything before then. I am now carefully going through my diet (it wasn't until I joined this forum that I realised that diet had a lot to do with this condition) so I can identify what I can and cannot eat. So far I have removed raw carrots and onions plus sweetcorn from my diet as I cannot eat any of those foods (I adore raw carrots and sweetcorn!), I have limited broccoli from my diet as well. I am now purchasing Lactose free dairy and it's early days yet to see if this is a problem.

The hardest part of following a diet is that the medication that is sometimes recommended has stuff in it that is red on the FODMAP diet - it's about time manufacturers had a closer look at the way they made medication. I bought Kolanticon Gel Oral Suspension and this is a medicine in which you take 2 5ml teaspoons 4 times a day if needed. This is for pain and does work but after I purchased it I saw that there was aluminium in the medicine - why? It is becoming widely known that aluminium can be contributory to Alzheimers so I don't know why it's added to the medicine.

I am so so pleased that you are feeling so much better and I hope and pray that this will continue for you - well done for the persistence.

Alicia

[Eternity78]

@ramblingplomer glad for you that you finally found a solution that works for you , but i was wondering why were you taking Laxatives when you were suffering from " faecal incontinence " ?? this will obviously make things worse !!

[ramblingplomer in reply to Eternity78]

Hi...I took he laxatives because my GP insisted that it was constipation and "overflow" diaorhea. I kept saying that it was exasperating my incontinence, but the only answer was that I should wear pads! Appalling eh!... I lost faith in the GP needless to say. I have also stopped taking the proton pump inhibitors because they can cause the overgrowth of bacteria if taken over a long period.

[Eternity78 in reply to ramblingplomer]

That is why I always believe in the old quote " listen to your body " Glad that your insistence and personal research led finally to a relief from your symptoms..Basically you treated your self not the doctors !!

Thanks for sharing your experience and wish you a healthy future ahead 🌷