IBS specialist clinics in the UK: Has anyone had... - IBS Network

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IBS specialist clinics in the UK

rustydog profile image

Has anyone had any experience of the few IBS clinics in the U.K.?

I am getting nowhere with my gp and the NHS. Endless tests yet I am still suffering from symptoms no matter what I try.

Just wondering if these clinics are legit or am I throwing money down the drain?

81 Replies

What tests have you had and what are you waiting for?

i had some tests (proctogram and ballon test) done privately, not NHS, with a GP referral - minimal waiting. Can you ask GP about those options?

Judith

rustydog profile image
rustydog in reply to JudithS

I have had a colonoscopy, a gastroscope with biopsies, ultra sounds scans, a ct scan, a FIT stool test. I would like to have a SIBO test and a comprehensive stool analysis test. I have asked my gp and gastroenterologist but they say they are not available on the NHS.

Can I ask what the proctogram and ballon test detect? Many thanks

AswanSheba profile image
AswanSheba in reply to rustydog

Hi there,Ive had all sorts of tests,colonoscopy,andoscopy,ultrasound abdominal.and recently a MRCP MRI.a special test gor liver,pancreas,spleen,gallblader and ducts,inclufing lungs.

They gound nothing.also blood works.

But i fo know what i hsve

Excessive gas.my gastro told me.

I sldo want the sibo test..but you can only have it private.it cost £ 350 and inclufing all poo tests .

So far NHS has been a waste of space to my symptoms.

Ive hD all these test private..

They eould not send me for scans..so i had to take matter in my own hands.

rustydog profile image
rustydog in reply to AswanSheba

It’s beyond frustrating isn’t it. My issue is excessive gas which is causing so many issues. I can’t really afford the tests privately I am going to have to borrow the money! The NHS gastroenterologist have been no help to me. The last one told me it’s was ‘just’ IBS and he couldn’t help me, told me to go back to my gp! They have been no help either. I am going round in circles.

AswanSheba profile image
AswanSheba in reply to rustydog

Well,ive been told by friends ,to book gor a sibo test.When you have IBS,you surely have sibo.coz that gives you a lot of gas,and bloated.

Ive consulted s free 15 mins appt with Healthpast.a clinic who specializes in gut

So we will try..

rustydog profile image
rustydog in reply to AswanSheba

I believe that I have SIBO too, I have all the symptoms.

AswanSheba profile image
AswanSheba in reply to rustydog

Its good to check,coz it has a lot of symptoms.they give you antibiotics.But gp dont do the test,its got to be private.

My gastro wanted me to do one,but he told me it would be expensive,so stick to probiotics.and fodmap.

That doesnt do nothing

Oscar091 profile image
Oscar091 in reply to rustydog

Hello I’ve got all the experience of SIBO test I was diagnosed with SIBO. Had antibiotics no improvement terrible symptoms pain nausea much worse in morning I’m at my wits end again so sick of feeling ill every day

rustydog profile image
rustydog in reply to Oscar091

Are you on Facebook? There is a good SIBO group on there with lots of helpful people who suffer from SIBO. It is supposed to be a really tricky condition to treat. I’ve read that around 75% of IBS sufferers may actually have SIBO!

Oscar091 profile image
Oscar091 in reply to rustydog

Oh sounds good yes I think I’m on Facebook just haven’t been on it for months . Thank you yes please get tested for SIBO I had to find a private doctor who diagnosed me after a breath test expensive but worth doing. I’m back with nhs now . Are your symptoms worse in the morning. I literally can’t get out of bed till 12 nighttime. Amber

rustydog profile image
rustydog in reply to Oscar091

The group is ‘SIBO survivors:- A guide to healing and living with SIBO’. Mornings are definitely the worst for me, in fact I dread waking up and getting through to mid afternoon when I start to feel a little better. I can never arrange anything in the mornings, appointments etc all have to happen in the afternoon for me. I work two days a week and dread each of those mornings.

Oscar091 profile image
Oscar091 in reply to rustydog

😳 you sound just like me .Do you get gurgling discomfort too . I know it’s awful living life this I can’t work always tired I’m 49 but feel 69 😂 not good. Nice to talk to you thank you

Oscar091 profile image
Oscar091 in reply to Oscar091

I always feel better in the evenings xx

rustydog profile image
rustydog in reply to Oscar091

You sound just like me, I’m 48 and feel ancient these days, do you think perimenopause is making things worse? The gurgling discomfort is one of my main symptoms 🙁

Oscar091 profile image
Oscar091 in reply to rustydog

I know it’s awful my mental health is suffering cause I can’t do what I want my life is been put on hold for over a year I’m so sorry to moan xx

Oscar091 profile image
Oscar091 in reply to Oscar091

I’ve been on hormone replacement therapy for the menopause cause I thought it might be something to do with that but no no difference at all . I don’t feel any of the benefits as yet. X

rustydog profile image
rustydog in reply to Oscar091

Please don’t apologise, I totally understand and am just we’re you are in your life. It’s so depressing xx

mal444 profile image
mal444 in reply to rustydog

Hi. I have also been suffering terrible explosive gas with fluid for past year. I only have a few days rest and then it starts again. I also have had two FIT tests. Bloods. Ultra sound of abdomen. rifaxamin antibiotic. Doxycyclone also. Tried questran light for suspected bile acid and that made me worse. I can expel watery gas for like 7 or 8 seconds. Between all this i can have normal stools. Gp dont want to know anymore and private gastro doc who i have been paying is lost also. Because im not losing weight or passing any blood they wont send me to hospital. I am sick of living like this

rustydog profile image
rustydog in reply to mal444

It really is so awful, how do we turn to when we get nowhere with the doctors?

mal444 profile image
mal444 in reply to rustydog

I know it is really upsetting and i feel for everyone like this. My stomach gurgles also with this. They tell me its not cancer but it still worries me. Basically i have to keep tissue at my back end when it starts up.

rustydog profile image
rustydog in reply to mal444

It’s a horrible way to live.

mal444 profile image
mal444 in reply to rustydog

Do you suffer wet flatulance also then with the amount of gas?

rustydog profile image
rustydog in reply to mal444

Yes 😩

JudithS profile image
JudithS in reply to rustydog

Proctogram and balloon tests are more focussed on constipation and difficulty in passing stools. perhaps better as an example that you can be referred. I hope you get the help you needJudith

Try to see a gastroenterologist in one of the Spire hospitals, I’m pretty sure they can arrange lots of extra tests as they were very helpful for me

rustydog profile image
rustydog in reply to Dia89

Thank you, I will check it out.

I have a gastroenterologist from the Spires group , he’s called Dr Rex Polson based on a Monday at the Spires Parkway Solihull.

He’s been the best one I’ve spoken to so far , out of the 3 different gastroenterologists I’ve seen over the past couple of years .

I

Thank you, I will look him up.

Yes have a look he’s £195 for 1/2 hr

There is a private clinic in London called the London digestive center. They have motility bowel experts not just for ibs. I’m in Scotland and have exhausted all tests available here and London have more equipment. Specialist is Quasim aziz.

Thank you. I will take a look at their website.

I went to St Thomas’s Hospital in Waterloo, London. I had a one-to-one appointment and examination with a specialist nurse. She gave me FODMAP literature (the hospital has done a huge amount of research into diet and IBS with an Australian hospital) and pelvic floor exercises to do. FODMAP is hard to follow and I definitely didn’t try with it. I probably should have done during lockdown as this was the perfect chance. It does seem successful for many people.

A few weeks later I was part of a group session with a dietician. The problem with that was that, out of 12 people, only two of us had IBS-D. Everyone else had IBS-C, so it wasn’t relevant.

I was sent a letter to make a follow-up appointment with the specialist nurse but was unable to do this. The letter had no extension number or contact name and, although I tried about ten times, the switchboard could not connect me. I didn’t do this within the specified time frame so lost the appointment. Very annoying.

My problem is mainly mental, not physical, and the nurse was going to refer me to a psychologist for help. Then Covid-19 struck and I’ve heard nothing. So the NHS tried but was not entirely successful.

rustydog profile image
rustydog in reply to Sebizzle

Thank you. I am the same as you. I follow the low fodmap and do all I can for the actual physical stuff but it’s the mental health aspect of it which is really affecting me and which most health professionals overlook.

bigbunbun3 profile image
bigbunbun3 in reply to rustydog

Hi rustydog, I agree, following the FODMAP diet is hard, and that in itself is difficult for our mental health, as can’t we enjoy some thing as simple as grabbing a sandwich & a coffee whilst out. We would have to class that as a treat, then suffer afterwards. I think knowing we are not alone with this horrid IBS is of comfort x

rustydog profile image
rustydog in reply to bigbunbun3

The low fodmap diet has actually given me more issues as I now fear all high fodmap food!

I wasted loads of money on tests in particular the ones that you are talking about. The problem is often the people who interpret them are not medically trained and they just attend courses. Some of the courses only require maths and english as a prerequisite whereas the subject matter they are dealing with I'd say requires a degree in microbiology as a minimum. There has been a whole industry built around this. They misdiagnosed me and I became extremely ill and lost loads of weight from their treatments. I believe what I am having to tackle now was caused by them. What IBS remedies have you tried? If you want I can pm you some tips.

rustydog profile image
rustydog in reply to xjrs

Thank you. This is always my worry, handing over the little money I do have to people who claim to know what they are doing but obviously the don’t. I have tried so, so much. I am low fodmap, gluten free, dairy free. I have tried all the over the counter ibs meds and many prescribed ones too. I listen to gut directed hypnotherapy, I walk every day. The problem is that I am IBS mixed/unclassified so although I do get constipation and diarrhoea from time to time my main issues are constant (daily) growling, gurgling, major activity going on in my guts, bloating, nausea, gas (excessively up and down), acid indigestion and I constantly fear I need the loo, it’s taken over my life and everyday thinking. Gastroenterologists tell me it’s ‘just’ IBS and to get on with it. It has affected me mentally in a huge way and I am constantly looking for the key/answer to a life without this awful complaint.

Sebizzle profile image
Sebizzle in reply to rustydog

There must be at least one gastroenterologist who has IBS. I’m sure that he or she would not dismiss the condition with ‘just’. We need to find that person.

bigbunbun3 profile image
bigbunbun3 in reply to Sebizzle

That’s a great thought !

rustydog profile image
rustydog in reply to Sebizzle

There must be at least one out there, somewhere 🤞

b1b1b1 profile image
b1b1b1 in reply to Sebizzle

Yes--find him and tell him "It's just IBS." I am sorry for being nasty, but I don't think doctors, even gastros really understand the toll this takes on your life.

xjrs profile image
xjrs in reply to rustydog

Did you try low FODMAP to the letter i.e. eliminate all FODMAPs for 2 weeks? Did your symptoms improve in any way by the end of that 2 weeks? After that did you one by one start to reintroduce FODMAPs whilst keeping a food diary? This is normally best done under the guidance of a dietitian from GP referral. Were you under the guidance of the dietitian?

Have you tried Alflorex probotic which has been scientifically studied for IBS? If you have a gut bacterial imbalance, it may help to shift that balance and make you more tolerant to foods. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/...

There is a big conundrum with IBS in that the health of your microbiome can influence symptoms. If you have a dominance of bad bugs and you feed them FODMAPs, symptoms can get worse, so people start to restrict their diets and sometimes heavily (I did). However, the health of the microbiome is defined by bacterial diversity. Many people with IBS have low bacterial diversity. When you have low bacterial diversity the bad bugs are more likely to take hold. Bacterial diversity is achieved by having a highly varied diet. Do you see the problem? It feels like a catch 22. This is why I mentioned Alflorex, since it may help to fight off the bad bugs, reducing symptoms and allow you to expand you diet more. Expanding your diet will improve the health of your gut which in turn can help guard against IBS. The ideal scenario is to eat 30 different plant foods a week - different cereal fibres and different coloured plants.

I was low FODMAP for far too long - it helped initially but eventually my IBS pain started to increase and increase despite the diet. I wasn't feeding my microbiome properly and the microbiome has many functions including looking after intestinal walls.

rustydog profile image
rustydog in reply to xjrs

I did the low fodmap 4 times under NHS dieticians. I have never got a low enough level of symptoms to reintroduce even though I follow it to the book, all green low fodmap foods. My dieticians told me that I am one of the 25% the diet doesn’t help.Unfortunately I am now ‘stuck’ on this diet as I am very fearful,of high fodmap foods so in a way I wish I had never started it.

I haven’t tried probiotics, it’s one of the few things I haven not tried. I have a huge fear of diarrhoea (stems back to the first IBS ‘attack’ I had in 1998). I really should try them though. I have seen the reviews on Alflorex and many are good but the few who say it’s caused diarrhoea puts me off trying, although I admit I am probably cutting my nose of to spite my face lol!

xjrs profile image
xjrs in reply to rustydog

I understand your concerns. I didn't get any side effects from Alflorex and I started to get benefits after 1 week but for some people it can take longer. Sometimes the diarrhea may be due to bad bugs trying to fight back and it settles. Is there any way you can work from home whilst trying it or try it when you have planned time off?

I am a bit concerned about your high level of dietary restriction. You might find this article interesting:

gutmicrobiotaforhealth.com/...

The participants on the low-FODMAP diet had an increase in Bilophila wadsworthia, a bacterium implicated in excess gas and intestinal inflammation.

rustydog profile image
rustydog in reply to xjrs

Thank you. Unfortunately I drive for a living so wfh isn’t an option for me sadly. I too am very concerned about my diet, I fear I have also given myself vitamin deficiencies but it falls on deaf ears with my gp! Thank you for the article.

xjrs profile image
xjrs in reply to rustydog

That's a pain. If you suspect SIBO (note my gastro said that this is a rare condition and may not be as prevalent as some may have you think), the breath tests aren't accurate, however it has a distinct set of causes, so it might be worth you investigating whether you have any of those causes. The list is quite long, but I can pm you if that would help?

rustydog profile image
rustydog in reply to xjrs

Thank you, it would be great if you could pm me the list, it would be so helpful.

bigbunbun3 profile image
bigbunbun3 in reply to xjrs

Hi xjrs, I completely 100% agree, I have been following the FODMAP diet for far to long, I found the slow introduction stage a nightmare, intolerant to everything, so still strict with FODMAPS, I have tried all of the probiotics going, has cost me sooo much money, but non of them helped me. Just making my own milk kefir which I can tolerate, hoping this after time will help 🤗 x

xjrs profile image
xjrs in reply to bigbunbun3

Sorry to hear that. Good luck with the kefir. Hope it helps you.

bigbunbun3 profile image
bigbunbun3 in reply to xjrs

Aww thank you 😊

rustydog profile image
rustydog in reply to bigbunbun3

The amount of money us sufferers throw at this complaint is unbelievable isn’t it? I have a big draw full of once used products, endless prescriptions which I pay for and can’t use for various reasons and don’t even get me going on the amount I have shelled out to people in private practice 🙄

bigbunbun3 profile image
bigbunbun3 in reply to rustydog

Aww yes me to, I've given up with everything now, just keep to low FODMAP'S and keep drinking my Kefir, hoping one day I will improve. Hope we all feel better soon ❤

rustydog profile image
rustydog in reply to bigbunbun3

🤞🤞

Don't waste your money on expensive gimmick tests claiming all kinds of food intolerances. I have figured out what I can and can't eat during a flare or in remission. Everyone is different and unfortunately sometimes these things take time. Combination treatments/CBT can help. Sometimes it isn't always about what you eat!!!Hormones (especially if female) and mental health can play a huge part, lots of things can interfere with digestive issues and not all are gut related

rustydog profile image
rustydog in reply to Viklou

I definitely won’t go down that route again, I have done several food intolerance tests and they all show up with different things. What I am looking for is comprehensive stool tests checking for bacteria etc. I agree that hormones most definitely make things worse, I am 48 and probably perimenopausal, I have had gut issues for 13 years but my symptoms have become so much worse the last few years.

Viklou profile image
Viklou in reply to rustydog

Everyone has bacteria in their guts levels change all the time. Please don't waste your money xxx

I suffer with IBS but not as badly as many on here do. But recently it seems to have got worse. I’m trying to work out what’s done this and I did wonder if peri menopause might be the cause as I think I’m coming towards the end of it. I suffer with fibroids too. I’m definitely leaning towards thinking hormones are a factor in it because my diet hasn’t changed.

Hi I have all the loud gurgling too! I have SIBO. Healthpath do a home test for £165

rustydog profile image
rustydog in reply to Alysm

I think I may have SIBO as I have so many of the symptoms. How are you treating your SIBO?

Did Healthpath give you advice after you tested positive?

Alysm profile image
Alysm in reply to rustydog

Yes Healthpath do give you advice after your test. Unfortunately it is difficult for some people to get rid of it, and I am one of them😫Rifaximin, an antibiotic is usually recommended but some GP’s won’t prescribe it and you have to ask a gastroentologist to.

rustydog profile image
rustydog in reply to Alysm

I saw a gastroenterologist last year, privately. He did say that if I did the test and it came back positive he would prescribe the antibiotics unfortunately I couldn’t afford both his consultation and the SIBO test. Problem is that if I tested positive now I would have to pay for another consultation to see him in order to get the prescription 😩

Hi,I’ve been looking into this for the best part of 10-12 yrs,it just takes your life over. I must have had every test available,I’ve travelled from one end of the country to the other. All I’ve really learned is these test are just to count out any other problems,then it becomes you’ve got IBS. I’ve also had Hypnosis,seen a psychiatrist,worse thing I done,seen a nutritionist,and lastly a Physiotherapist,which I wish I had seen first,because she would have probably been able to help me 10yrs ago. All have either been NHS or Private. I suffer pain daily,and it’s getting to a stage where I can’t cope some days,that’s when my hubby puts up with all the tears,but can’t help me as much he would like to. My life stopped over 10 yrs ago,so whether you pay or go down the NHS route,I found what I thought was the best specialist in the UK,in Manchester and after 5 yrs of travelling there,I’m still the same.

My advice to anyone here is don’t think there’s a magic pill,and end up with an addiction to medication that’s doing nothing for you,like I have.

I would Just like to wish you all good luck either way,I hope one day you will be feeling better from this agony. XX😢

I really feel your pain, I have had this for 23 years, it has taken over my life and has changed me as a person. I have actually self referred to see a physio, as I have other issues and believe I have joint hyper mobility which I believe can affect the digestive system too. Could I ask who the specialist was in Manchester? It’s miles from me but at this point I’ll travel anywhere. Was it Prof Whorwell? I have wanted to see him ever since I got his book. I too hope you can find some relief one day, it really is no way to live is it? X

I spoke to Professor Whorwell last October, I have IBS-C

I really had high hopes but unfortunately , I found his book more helpful , as all he recommended for me to take for the constipation was Dulcolax liquid , it was like rocket fuel , it made my stomach worse & caused diarrhoea

Oh that’s a real shame, I have so many books on IBS and his book is one of my favourites. Oh yes dulcolax is dreadful, my sister took that last week and was in agony. You most probably have tried this but have you heard of Laxido? My friend had awful IBS-c and says since taking these she is regular every day and feels so much more comfortable.

Thanks

I’ve heard Laxido talked about within this group but not tried it , I take Prucalopride & macrogol but stupidly added Senna , in the last 6 months which I’m trying to wean myself off very slowly as it potentially causes lazy bowel , I’m hoping it hasn’t already but the specialist said it takes years of taking it to cause that problem 🤞

Aww I travelled a long way to see him to, had exactly the same advice, he did also recommend hypnotherapy which I already had tried. Came home feeling very deflated. His book is good though x

rustydog profile image
rustydog in reply to bigbunbun3

That’s such a shame x

Yes his book was really good & £10 , he cost £350 for an hour !!

The book was better value 😂

He referred me for hypnotherapy but I’m still waiting ....

Aww gardenlover2020, I hope you very soon hear about that. I decided to find some one close to home for hypnotherapy, the trouble with me is I never set the time aside to practice 🤦‍♀️ x

Yes it was Professors Whorewell,but he’s now retired I believe.I seen him for over 5 yrs,and he never examined me once. He just talked to me and recommended Diazapam which I was and still am taking anyway. It’s helps with the anxiety. I seen a female Physio and she gave me more advice than anywhere I’ve been. But she said she would have to work on the bottom of my spine,but I have osteoporosis,she said it would take ten years to cure me,and because I was private,she said she couldn’t help me,and didn’t want to take my money. To be honest with you,I don’t know if I’ve got IBS,IBD,Pelvic pain dysfunction,Or perineal pain. Or any other name they can find. I think like me your life just resolves round this problem,giving you no life at all. I have multiple problems some life threatening,but this pain is continually on my mind,until I sleep.

Sorry to sound so depressing,but that’s how pain makes you. You take care,and only pay if you think it will help.

Thank you. I really feel for you. Carrying pain around every day is very depressing. I really hope you manage to get some relief one day, take care.

Thank you,same with you,hope you get the help you need.🤞🏻

Due to the lack of help from the NHS and the difficulty in diagnosing the symptoms, IBS has now seen a plethora of people offering advice/solutions. Many may be genuine but ultimately it prays on the desperation of the patients. I have tried many of them, wasted a lot of money and have now come to the conclusion that I will only pay for the ones that I enjoy (either down to the treatment or the practitioner.) One example of this is reflexology. I think having every test out there is only worth it if you are genuinely worried you have something more sinister. Otherwise it very likely wont help anyway as it wont provide you with solutions.Everyone is different and unique and I try to remember that every day.

rustydog profile image
rustydog in reply to Barney100

Thank you. I am hoping to find something like reflexology or similar which I can use to help with the stress I carry with this condition. I want to find someone local I can trust and use long term. Like you say there are so many ‘experts’ popping up, especially on social media and they charge a small fortune for their fees etc.

rustydog, these links may offer a means of addressing your concern and provide a platform for better health. The first three links address an unrecognized thiamine deficiency affecting the vagus nerve connecting the brain gut axis. Several high absorption forms of thiamine are Sulbutiamine, TTFD and Benfotiamine are important to investigate in addition to other forms. Magnesium is a required ingredient to activate thiamine so a magnesium deficiency may also be involved in vagus nerve under performance. Search on "krispin magnesium" for information on forms and dose calculation. Boron increases magnesium absorption and offers other benefits. Search on "nothing boring about boron". The last link concerns anti thiamine factors that deplete and neutralize thiamine. Also it's is vital to study thiamine and it's importance for brain function and the importance of thiamine that is efficient in passing through the blood/brain barrier. Although B1 has been the focus, the B vitamins work better together. Always consult your health care provider befose using any supplement.

eonutrition.co.uk/post/thia...

objectivenutrients.com/insi...

eonutrition.co.uk/post/got-...

stuttersense.blogspot.com/2...

rustydog profile image
rustydog in reply to Pte82

Thank you so much, I will look through those.

Try the IBS clinic at UCH. Dr Emmanuel

rustydog profile image
rustydog in reply to cpidoc

Thank you, I will do.

I take Bimuno pre biotic and Symprove probiotic. I occasionally use Healthspan elite aloe Vera tablets with very occasional buscopan . I also take Nuzest good green vitality. (There must be cheaper alternatives) Have you tried intermittent fasting and low or lowish carb diet? There are more than one dulcolax, I have found sodium picosulfate liquid useful and you can use small doses as liquid.Nurturing the microbiome has to be key, I think.

What about caffeine?

Do you know your vit D level? Vit D is controversial in IBS but very good for you, imo.

I hope you find some relief.

This is interesting for those with diarrhoea

mayoclinic.org/medical-prof...

rustydog profile image
rustydog in reply to cpidoc

Thank you. I will look into all of those things.

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