SIBO HELP PLEASE!!!

[Flecmac]

I have been suffering chronic bowel and left side hip pain for a long time. My GP just says it’s IBS. I know it’s more than that and I am in agony all night with pain, nothing helps. I am distraught! I have looked into SIBO over many years and feel that now my symptoms are chronic. I have had coniscopies etc but my gp is reluctant to refer elsewhere. But I need help!!! I have a leaflet about a breath test on nhs at my local hospital but I doubt my gp will agree with this!!! I have been asking for help with hypothyroidism for many years and they are all tired of me, they just don’t believe me any more. Any help and guidance would be much appreciated please.

[Angel_of_the_North]

I don't know why your GP is so reluctant to refer. I got SIBO breath test, barium swallow and bile acid tests without even having to ask - just from having IBS symptoms and low ferritin. Have you asked for a referral to gastroenterology? It might work if you say you are worried about cancer or internal bleeding.

[Flecmac in reply to Angel_of_the_North]

I have asked for referral many times, all I get is bloods and colonoscopies. Ferritin is OK. They all think I’m a hypochondriac!!! I’ve pushed for so many things concerning hypothyroidism, rheumatology etc etc. Had major op in April to remove neurogenic tumour from nerve in spinal canal. Just so fed up of being ill and no solutions. I tell them my Mum has bowel cancer etc. Just at the end of my tether, the lain is awful, especially at night, no sleep, all good upsets me lately, don’t know what to do. Thank you.

[Angel_of_the_North in reply to Flecmac]

Might be time to change doctor

[Flecmac in reply to Angel_of_the_North]

How is yours treated? x

[Angel_of_the_North in reply to Flecmac]

All my tests were negative, so no treatment. But I got the tests with no trouble

[MaisieGray]

The negative colonoscopies you have had, have at least ruled out problems such as cancer in that area, so that is good. Regarding SIBO, do you have any of the other possible symptoms apart from the pain you mention, that can support your case for it being investigated, such as weight loss, poor nutrition, bloating/distention, diarrhoea/constipation, gas/belching? The trouble with the breath test, as I understand it, is that it returns a high percentage of false negatives; but the only way to know if your Dr will order it, is to ask him. As an aside, just treating SIBO symptomatically with antibiotics, is thought to be inadequate, with quite a high return rate; and that therefore addressing the underlying cause is key. I read that some sufferers may benefit from the addition of a prokinetic agent, to increases the muscle contractions of the small bowel, and that some are using low dose naltrexone for that - which many are self-medicating. If you feel you have a sluggish bowel that might be causing or contributing to your problem, that may be an option for you.

[Flecmac in reply to MaisieGray]

I have all those other symptoms. What’s best to do? I will ask for breath test but my gp said she was referring me to gastro weeks ago but secretary said no referral, this is the second time!!! O wait for appointment but nothing happens. So even if she agreedI doubt if a referral would go through. Don’t think they can order a test. I just do not know what to do to get well. I’ve been banging on about hypothyroidism for so long, they just think I’m mad!!! No one listens anymore! Thank you xx

[MaisieGray in reply to Flecmac]

Do you think she has forgotten to make the referral, or that she has, and it has been declined? If the latter, ask for a print out of the Gastro's letter to see why; but if the former, you'll need to chase it up. I've recently had two separate 2-week cancer referrals by my GP, first for skin, and then for gut issues, and each time she said "I'm doing the referral right now, but if you don't hear, don't just wait, but tell me you've not heard as anything could go wrong, with the best of intentions". So we have to take responsibility for chasing things up. As to what to do, sometimes we have to make a formal complaint to the surgery, explicitly setting out our problem and how it hasn't been dealt with to our satisfaction, and what we believe should be happening but isn't. The ball is then in their court to respond; but obviously making a complaint can have its repercussions in terms of your relationship with them. Is changing surgery an option, or seeing a Gastro privately? BTW, in terms of patient rights, we have the right to ask for a referral to a secondary care specialist, but not the right for that request to be acceded to.

[Flecmac in reply to MaisieGray]

I’ve tried everything. Secretary said she will get my gp to ring when she gets back on 11th, and she only works 2 days. Other surgeries here are reported to be no better. I have chased this up before, still nothing. Thanks xx

[MaisieGray in reply to Flecmac]

I know it's very non-PC to say so, but I think it's a nonsense that a GP is allowed to work only 2 days per week. It's nigh on impossible at some surgeries, to get an appointment nowadays, so if you factor in that a GP is hardly ever there, what chance do patients have. In any other profession part-time working is permitted only where the exigencies of the job allow it. Meanwhile, back to you, perhaps use the time productively between now and then, to write out your complaint, which will help clarify your case when you speak to her, and if the conversation doesn't have a positive outcome for you, you've got the complaint prepared and can submit it with no further time lost.

[Fruitandnutcase in reply to MaisieGray]

I so agree with you MaisieGray! Our surgery seems to be entirely staffed with doctors who work part time. It’s almost a case of adding up all the hours worked by all the GPs, dividing them by the number of GPs who work there and then discovering that your practice actually only has two full time doctors.

Now The last founder partner who was a really decent old-fashioned caring man has retired (the longest serving doctor there now is the one who clearly decided I was a total hypochondriac and told me ‘I was needing my holiday’ - when in actual fact I presented with all the symptoms of Graves)

I can only assume the last of the founders kept the practice manager at bay as he (the practice manager) now appears to have made changes making it almost impossible to get a same day appointment, they have a system where they only give out same day appointments if you call between 8.30 and 9.00.

To make matters worse they seem to have been having teething troubles with a new computerised telephone system that wasn’t working which meant patients couldn’t even get through.

Last time I tried to get a same day appointment for a GP - any GP not my own - was three weeks ahead. To see my own GP would have taken even longer due to the fact that she only works two days a week.

It really saddens me that what was once a wonderful patient friendly GP practice when it started up 35 years ago now suddenly seems to have the sort of problems you read about in the news.

[MaisieGray in reply to Fruitandnutcase]

Agreed. It used to be that the only thing we worried about when seeing our GP, was the likely diagnosis...... Those were the days. Add to that, the bizarre situation whereby the receptionist can't find an appointment until three weeks hence because the GP is on holiday or booked up until then, but they're not allowed to book more than two weeks in advance ..... I was once told that receptionists aren't allowed to start booking appts for Drs on holiday until the day they are back. I asked how did they pass their time then, on the first day back if they'd got no appts booked .... I'm sure there are some, but I've yet to meet a practise manager who'd even make the shortlist, never mind be appointed to the job - and I went to a lot of practise meetings when on the Board of my HA.

[BonnieT]

I was hyperthyroid for years when a teen then it reverted to hypothyroidism 30 years ago (yes, I’m old). They do my bloodwork every six months and for years it has jumped up and down. I’ve been on methotrexate for RA for a year and my last blood results showed the best results ever and even my A1C was about perfect after being borderlevel for years. My thoughts are that it’s the methotrexate. My breast doctor told me they prescribe MTX for breast cancer. My Gastroenterologist told me they prescribe it for Chrones disease. It’s been around since the 1950’s so is well proven to help. Seems strange but seems to be working for me. As for your problem, have the blood tests ruled out Thyroid? There can be false positives and false negatives. For years I bounced from doctor to doctor with my disabling body aches and they said I had an autoimmune but the bloodwork was not definite about what it was. A new doctor and a new diagnosis (still not definitive) got me on MTX and finally feeling better most of the time. Can you look for another doctor? Here in the US some health plans don’t allow it. My old plan did. New plan started yesterday and will let me keep most of my current doctors. Good endocrinologists are hard to find. I wish you well.

[Flecmac in reply to BonnieT]

Those were the days xx

[Flecmac in reply to BonnieT]

I have Hashimoto’s xx

[MaryMary]

This is a totally different perspective for you to consider. Sometimes if we have joints out of alignment e.g. In pelvis or spine, this can cause stomach, digestive, pain issues. I personally have a problem with my pelvis which causes almost intolerable pain when it is out of line. I see a chiropractor who sorts me out! P.s. I am also hypothyroid.

I hope you get some answers soon.

Mary

[Flecmac in reply to MaryMary]

Thanks. I have spinal scoliosis on multiple levels and disc bulge. Also had major op to remove neurogenic benign tumour from nerve to spine last April. Any idea how I can find a good chiropractor in Nottingham please?

[MaryMary]

I'm not sure, but maybe personal recommendation would be best. I doubt whether your GP would refer you. Be sure to mention all your back problems before you go to ensure they are happy to treat you. Good luck.

[Gabriela71]

Hi,

I know its been three months, you may have solved your problems.

If you didn't, if you suspect Sibo you can go to dr. Izabella wentz website and order it from there.

I found out recently that I have Sibo.

I kind of suspected it, and I asked the functional medical doctor for the test.

It came back positive with methane production bacteria witch causes constipation.

I didn't want to follow the protocol she gave me. For one thing it was crazy expensive, and if I can avoid taking antibiotics I would do it.

So I decided to do research and go on on my own.

What I'm taking right now is Allimax, a gallic extract, and another one that has turmeric, ginger, curcumin and bioperine. I took oil of oregano for a while as well. From what I learned, it's not easy to get red of sibo and the recurring rate is high. That is why is good to do more than one round of antimacrobials. I'm following a low Fodmap diet as well.

It is an Australian dr. don't remember her name, but if you search YouTube entering the queen of Sibo probably you'll find her. You'll learn a lot from her.

Another one is dr. Hangmyer, he has quite a few videos on Sibo. I like how he explains everything.

If you can't find a good dr. In UK many dr. In US went virtual. Expecially those functional medical ones.

They treat people everywhere in the world.

But you have to be careful, because they can be very expensive, and not leave up to their promises.

That is what happened to me, I chose the first one I came across happy that she was here locally so I would actually see her, but she's crazy expensive.

Not to mention that she wasn't much help. As I said I had to ask her for the Sibo test, when the symptoms were there all along. Functional medical doctors are more holistic in nature, but come to find out that she's still pretty tied up with the conventional model.

But it was my mistake I should have done my homework before choosing one. I learned a bunch from other functional medical dr. that published lots of articles online or have YouTube videos.

Hope it helps!

If you have any questions feel free to ask.

[Flecmac in reply to Gabriela71]

Thanks. Do you mean order a book? She has a few. I borrowed the protocol one from the library. Yes it was interesting and I get emails all the time from there, however it does always seem to be about buying her books. Do you have any links to any info and advice including recipes etc? I have read many books by different authors on the subject and haven’t really gleaned very much and they all have different ideas. I am so confused about it all, saw Endo yesterday and he’s keeping me on 75mcg levo. I would love to help myself through diet etc but it’s so complicated and time consuming, I’m exhausted! Are you in America?

[Gabriela71]

I'm sorry to hear that you are still struggling a lot.

Yes, I leave in United states.

You know, just crossed my mind that I know a very good functional medical doctor, that's virtual and very affordable.

He charges a fraction of the cost I paid with the other doctor.

He and his wife that had Hashimoto's run the program. It Is email driven, you get information gradually once you get into the program, so you won't get overwhelmed. They walk you through the program step by step.

It comes with recipes, shopping lists, and tons of education that is easy to understand. You can follow their meal plan, or your own as long as you stay in the what to eat list.

I highly recommend them, especially if you want help with diet.

I think that the program is still about $300.

It comes with a Facebook private group as well. It comes with a consultation with dr. Cocker at the beginning of the program. They recommend suplements, but they don't sell them. Their emphasis is on the healing power of food.

They send you a book, and a cell damage test, part of the program.

The only thing is that if you have a question, it takes 2 or three days for a response. But you can post the same question in the Facebook group, and you may get an answer quicker.

His name is Bryon Cocker.

He has a few YouTube videos, if you want to listen to him, before making a decision.

The program is called 3:16 jump start.

I hope this helps!

[Flecmac in reply to Gabriela71]

Thank you. ☺️

[Lola123456789]

I’ve been diagnosed with IBSC constipation type. I have stage 3 kidney disease. My nephrologist was furious I was taking Mag07 which is magnesium oxide. Nothing has helped, Linzess, Trulance & Motegrity have not worked. I’m open for any tips. I exercise daily

[Hidden in reply to Lola123456789]

Hi there I’ve had ibs c all my adult life tried every laxative and diet known to man to no effect . Read somewhere olive oil is good lubricates the intestines . More fibre especially insoluble is very bad too much fibre causes more problems it scratches the intestine and irritates it . More fibre and more water equals larger stools more difficult to move through intestines .

[Hidden]

Hi there doctors always say it’s ibs when they can’t be bothered with tests !

[Hidden]

Ooh that sounds a lot posher !!

[Hidden]

Eat more fibre is my favourite thing doctors say ! Makes everything more clogged up ! Fine if you need a cork !