Should I see a private GI specialist? What are your experiences? (UK)

This is my first post on a forum so sorry that it's long!...

I noticed symptoms around 2 years ago, they worsened around half a year ago and have got progressively worse over the months until now. I suffer with constipation (I go several times a day but only a small amount at a time), I never feel empty, have the constant urge to go to the bathroom, a constant dull pain in lower abdomen on the right side sometimes going down towards my pelvis, this pain occasionally becomes crampy/stabby, nausea, loss of appetite, fatigue, joint pain. Around my time of the month (or every 2 weeks sometimes because my periods have been all over the place since they came back a couple of years ago), I get more constipated, bloated and my stools go from being small and pellet-like to being soft, dark and more foul smelling for a couple of days before; once my period starts, I get more diarrhoea-like stools as well as pain and cramping in my pelvis and vagina.

My GP has been really good to me - I've have had various tests (blood tests to check for inflammation, anaemia, celiac, etc which, other than low iron, all came back fine) and have tried several medications over the months (senna, Laxido, Fybogel, mebeverin, amitriptyline, milk of magnesia, lactulose, glycerol suppositories, mini enemas and higher doses of laxatives for faecal impaction). After none of these helped me, my GP referred me to a GI specialist.

I had that appointment a couple of weeks ago and he pretty much put it down to being "just IBS" (why do people say that like IBS is nothing??) and told me to try Constella for a month. I'm waiting to hear about a referral to a dietician and he said he'll follow up with me in a few months.

My problem is that it's been interfering with my life (job, university, seeing friends, my confidence, etc) for months now, and my symptoms are constant so I get NO relief which is making me feel really down. I'm also aware that many illnesses can mask themselves as IBS and I worry that there may be something physically wrong inside of me that we're not looking at (via scans and other tests). Possibly my anus or colon somewhere.

I've looked into going to see a specialist privately to see if there are any other options or routes to go down. A consultation and possible rectal examination will cost me around £400-450 but I'm willing to pay for this if I get more help or answers.

EDIT: I have a follow up appointment with the specialist I saw previously in the middle of September and have started trying out Constella.

MY MAIN QUESTIONS ARE:

Has anyone in the UK been in a similar situation feeling that you're getting nowhere with the NHS and have decided to invest in going private?

What was your experience? Was it worth it?

15 Replies

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  • Hi kimmy3 im in the UK and have had an horrendous experience with the NHS.

    2.5 years ago i got food poisoning and now i have the most debilitating IBS, its often beyond anything i can cope with, ive had "professionals" walk out of the room while talking to them and gastroenterologist even do the same, i waited 5 months to see one and he couldn't even give me 5 mins. told me " we cant cure you, there is nothing we can do"

    One day i had pains so bad i was in a ball on the floor clutching at my stomach. it was constipation, but crippling. this went on for many hours, ( and its not the first time either ) but my mother was present and she phones me an ambulance. i got sent to hospital in the back of the ambulance and they helped me go to the toilet. and then kept me over night.

    While in the hospital bed with the world spinning a nurse came to ask me if she could get me anything to eat, i said no thanks and explained my condition and she said, " yes i heard about you, theirs IBS and then there's your IBS," but long story short she told me that she also suffered for 10 years and only recently returned to work. She said how it was a Professor Whorewell from Manchester university who helped her, and she wrote his information down for me. ( i never got the nurses name as she was very busy)

    After i was discharged again i went straight to my local GP and said i want to see this guy, The appointment took a while to come through but i highly recommend trying to see him... or go private as you say, But this guy will see you on the NHS. however some of his treatments the NHS wont fund. such as CBT hypnotherapy.

    My appointment with his was an hour long and he was the first "professional" ive spoke to who actually knew what i was going through.

    Anyway thought i would share that recommendation and my experience with the NHS :)

    Goodluck in your journey !!

  • Good advice.

  • Have you got the Drs details in Manchestereliance

    X

  • Very good advice and it's such a shame that it takes someone who has or has had IBS to understand and listen!!

    Well done for sharing your story and I hope that things are on the up for you.

  • Thank you so much for your response! I'm sorry that you had an awful experience with the GP's that you saw, but that's great that you got referred to see him!

    Do you mind me asking what he did when he met you? I have found a really well-known specialist in this area but am not sure what to expect from a consultation with someone who will take it more seriously!

  • Robwilde l know exactly how you feel! Mine does not take anything seriously about my hurting, bloating. I tell him and he says thats just part of it. Meaning IBS l guess. Well l do not believe your stomach hurts everynight and the bloat is not an everyday thing. At least that is how l feel about it. So l did called my primary care doctor for advice on a doctor. He told me who he recommends and l made a appointment that day. My appointment is this month and l am glad. This is me and my own opinion in what l am going to do. :)

  • Hi Kimmy3, I really do understand how you feel as my symptoms are similar to yours. My ibs started shortly after insertion of pacemaker 6 yrs ago, I feel it is the medication I have to take since that time that is causing my ibs-c problems but no one will listen to me & the dietician who I only saw once as she works mornings only (my worst time) didn't tell me anything I didn't already know as I am daily searching for a cure or help at least. I am due to see another gastroentologist soon, the last one no help at all, only ibs-c he said & stop taking Immodium, some times take immodium just to be able to leave the house, which I know should not do with C but when you are going to toilet (sometimes 16 times a day) it is the only way I can safely leave the house to keep appointments etc. but immodium does make c worse, vicious circle. Like you never feel empty, started taking Immodium initially, prescribed by GP, as I thought it was D. Sorry nothing to help as yet but will post again after specialist appointment. Ibs is ruining so many lives & I still feel it is not being taken seriously by medical profession. Keep trying, Good luck.

  • Sorry that you've not been well recently; IBS can be so debilitating and it's such a shame that we're often just left to fend for ourselves. It would be great if you could post once you've seen a specialist. Thanks for you reply and take care!

  • Google Monash University - FODMAP. Download their app too. They have YouTube clips as well, explaining, their research into IBS.

    I have IBS-D at the moment but according to my gastroenterologist I also have non-specific colitis (shown on colonoscopy) and I walk a tightrope as I have to beware of constipation. He also confirmed that IBS is linked to EDS which affects connective tissue. Basically you have to research and persevere. Find a buddy and work together - IBS affects so many people. Forums like this are great!

    My gastro consultant is great but IBS is not his speciality. His advice......bulk up the stool with fibre(I use psyllium husk in water morning and evening), drink plenty of water and follow the FODMAP diet. Pears are not good for diarrhoea but great for constipation .....one a day - with its skin!

    I am seeing a FODMAP trained dietitian at St Marks Hospital (London) next week. It is best to have supervision. You can find FODMAP trained dietitians on the Kings College London website. Kings College London are researching IBS and training dietitians. There is hope that IBS can be controlled.

    Marilyn Glenville has a great book about living with IBS -check your local library. Also, my friend, who has chronic constipation, saw a physio after a referral from her GP. That helped. She puts her feet on a low child step (like you use for a toddler) to get into a kind-of squat position. Movicol from GP for bad times!

    Good luck. Hope some of this helps.

  • Hi there, as you haven't got anywhere with the NHS I would certainly consider private. I wouldn't normally say this but when you are at your 'wits end' you will do anything.

    Re constipation, I also get this and take a rounded dessertspoonful of Golden Linseed, this is the same as Flaxseed, in about a 3rd of a mug of water, soak for an hour then drink. Some people grind the seeds down as they digest more easily. I use organic seeds as I feel better using organic but it works for me.

    Very best of luck

  • I will try the Golden Linseed and see what happens. Thanks for your advice!

  • Best of luck and I hope it works for you.

  • Hi Kimmy, you poor thing. I suffered chronic constipation for years too. Do you drink enough water? I find I don't suffer so much if I manage to drink 2L of water a day. Another thing I noticed was that you suffer nausea and loss of appetite - this is probably linked to the constipation so things get 'backed up' - but you mention fatigue and joint pain too. The fatigue snd joint pain may indicate a gluten intolerance. My symptoms got worse gradually over many years then got severe over a five year period. I snapped too (after many tests getting me nowhere) and it was only when I ended up in A&E that a nurse suggested it was food related. It got me thinking and I realised that it did seem to be food related. I actually opted for food intolerance testing (measuring IGg immune responses) and it turns out that I have a 'higher than average' number of food intolerances - to eggs, milk, wheat, gluten, millet, yeast, crustaceans and coffee. I felt amazing as soon as I cut them out - the bloating, nausea, constipation/diarrhoea, joint pain/ stiffness, fatigue, itchiness from time to time, and even palpitations began to subside and I felt human sgain after a couple of weeks. It may be something to consider since the NHS would only refer you to a diertician to do FODMAP elimination diet but if you have multiple triggers it can be hard to spot the culprits. I used YorkTest for my test, it's considered 'alternative medicene' by the NHS but thought I'd tell you about it as something else to consider if uou're willing to pay for a food and drink scan. Hope you find some relief. xx

  • Thank you so much for you reply- really informative. That's really good to hear that you're symptoms have got better since finding that out! It seems as though my symptoms are bad regardless of what I eat/don't eat, but it might be worth investigating as it may give me a way to relieve my symptoms! I'll look into prices and find somewhere local to me. Thanks again :)

  • Good luck. Do research on intolerance tests before you decide who to use. Ideally you want one that tests by blood sample. FYI YorkTest do everything online and by post and are probably the most reputable company for intolerance testing. Their price also includes a consultation with a dietician.

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