Hi, I was on this site about 6 months ago trying to find a solution to my problems so please forgive me for returning but I am no further forward and still searching around for answers. On the internet I found a site called "THE IBS & GUT DISORDER CENTRE - London, Sussex & Oxford". They will do a stool test for about £185 to test for all sorts of parasites etc. that are not tested on the NHS. I am wondering if anybody has ever used this facility? I don't want to be ripped off but am so desperate I need to get to the bottom of what's causing my problems. Any help would be much appreciated. Thank you.

17 Replies

  • Have you had a diagnosis from a hospital consultant ?

  • Hi cricketqueen, It's a long story. I have had diahorrea since last January. I was so desperate I paid to see a Gastroenterologist who wanted to do a colonoscopy. Because I had such an allergic reaction to one some years ago I cannot have that done so had a CT Scan instead. I have diverticular disease but he wouldn't treat me for that so the diahorrea carried on. He wanted to do a bile malabsorption test with a radio active tablet which I also cannot take so he decided to treat me for that anyway, it was just a guess! I explained how allergic I am to just about everything including Aspartame etc. and the very sachets of Colystyramine he prescribed contained Aspartame would you believe. I researched myself and found Colesevelam tablets which I thought I may be able to take but when my GP went to prescribe them for me the NHS won't fund them as they are too expensive. About £120 a month. I would pay for them but I've already spent so much money it will be a last resort as they may not suit me either. The problem is I am a chronic migraine sufferer and have to be so careful what I take.

    So basically after three expensive visits to the Gastroenterologist I got no help whatsoever so my GP is trying to deal with it. I just found the IBS site

  • Sorry, pressed the button before I had finished! Will continue: I just found the IBS site I mentioned and wondered if it was worth pursuing. I must add that the Gastroenterologist did do blood tests and a basic stool sample test and he felt fairly sure I didn't have any obvious signs of anything untoward so he was not unduly worried. He just thought I had IBS. Sorry it's a rather long and complicated story but I have suffered so much and cannot go out much at all so I cannot have a social life. I don't know where to go from here. I feel very alone trying to find a cure for myself.

  • Have you tried the FODMAP diet - it seems to help a lot of people

  • I have cut out just about everything I can from the FODMAP diet and eating very carefully. I have been gluten free for several weeks but that didn't make any difference. It's difficult to know what to do or how to cope with this terrible problem apart from dosing myself up with Immodium which makes me feel terrible. It's certainly a nightmare to cope with for sure. Thanks for your help, much appreciated.

  • Hi, sorry to hear things are bad for you. Do you think any of your physical problems might be caused or worsened by stress? If so have you considered asking your GP to refer you for CBT (Cognitive Behavioural Therapy) ? I found it a help.

  • Hi Zeitgeist, Thanks for your reply. I am under stress through constant migraines ruining my life but I've lived with that for most of my life. If I have a good couple of days I am fine so feel if I could control these stomachs upsets I would feel so much better. I feel sure I had a dodgy salmon meal in January when this all started and I haven't been right since. It's getting the doctors and gastroenterologists motivated to try and help. There are so many non invasive tests that can be done but I don't suppose they will do them due to the cost. We are strapped for cash in our area so I feel I'm left to my own devices. Many thanks for taking the time to get in touch.

  • Hi patricia here I woudent waste yur money to test for paracites they dont work my sister paid it for a coeliac test & it said negative & she has got it go to see your doctor first babe

  • Thank for replying Patcy2468. I'm sorry your sister paid good money for a coeliac test and it wasn't correct. That's what I am worried about, paying for a test in good faith and just wasting my money. I'm seeing my GP on Monday and I will have to try and push a bit more to see what else can be done.

  • Yur wecum babe but your best bet is seeing a doctor gud look but dont do wat I did left it for yrs & put up with the dyria & stomache pains so bad yurs patricia

  • Thanks Patricia, Hope you are not suffering too much yourself. I am going to keep searching for answers until I hopefully manage to get things under some sort of control. Regards Marian

  • Hi marian did you manage to see your doctor I hope you did my sister valerie has that divicurtistis & also coeliac disease but divicurtistis is a form of coeliac disease so ask questions about it babe to yur doctors dont just suffer there is alight at the end of the tunnel take care & be safe

  • Hi Patricia, How kind of you to get in touch again. I've just had a course of antibiotics (Metronidazole) which has helped, at least for the moment. I told the Dr. that if I have been diagnosed with diverticulitis why couldn't I be treated for it to see if it worked and he reluctantly gave in. Our surgery is very resistant to giving out any antibiotics at all but sometimes we really do need them.

    I didn't realise that diverticulitis is a form of coeliac disease so will have to keep that in mind. The gastroenterologist did blood tests whilst I was there but didn't tell me he was testing me for coeliac disease and at the time I was on a gluten free diet which was frustrating so the tests showed up that I was not a coeliac but I still wonder. I am back on wheat again now so maybe I'll go back if things get bad again and ask for another coeliac test. No wonder these doctors get things wrong if they don't ask you questions before they do the tests.

    I hope you and your sister Valerie are improving and not in too much discomfort. These stomach problems are a nightmare if they are not diagnosed or treated properly. Take care and thanks again.

  • Yur wecum babe gut problems are the worse pains you can go through I think I have suffered all my life with intestine problems but I never found I got the help they could of give me so dont let them grind you down babe ask more questions about coeliac becouse a lot of the time people suffer with the horrible gut problems with ibs & just have spasms with horrible pains but coeliac attacks its own tissue that leaves you deficient in so many vital nutrients so marian you take care hun patricia

  • Thanks Patricia for taking the time to contact me, it's always a great support to hear from others who are suffering, it makes us feel we are not so alone. You take care too

  • HI, I'm wondering what you meant by you were allergic when you had a colonoscopy? Because truly that is the surefire way you will get an accurate diagnosis. Everything else is guesswork and hit or miss while in the meantime you suffer. Let me know what you meant if you can. Thanks.

  • Hi bff4ever, Thanks for your message. You asked what I meant by being 'allergic'' when I had a colonscopy some years ago. It was the medication I had to drink to empty my bowel (picolax) which caused a chronic, violent and severe reaction. I know it's supposed to be abbrasive but what I experienced was so bad that it's difficult to describe without being too graphic!! The diahorrea it caused was horrendous and went on from lunchtime until the early hours of the next morning also I couldn't stop vomiting so was more than severely dehyrdated as I couldn't keep any fluids down at all. Because I was so dehyrdated it caused an aura migraine from hell which affected my eyesight and I couldn't see properly so I was in a desperate condition. It was fortunate that my husband was with me as he had to try and manage to clear me up as best he could and look after me. Eventually I partially collapsed and layed prostrate with my rear end in the bath room and my head on the landing (if you can imagine it!) covered in a towel. In the end I managed to keep a migraine pill down long enough to ease the pain which helped a bit. My husband hosed me down (many times) and I managed to get a couple of hours sleep before I had to be back at the the hospital (about an hour's trip) to have the colonsocopy camera procedure carried out. I had to drink two sachets of the Picolax, I was stupid to take the second one but we tend to do as we are told. When I told the nurse the next day what had happened she told me that under the circumstances it would be best if I didn't take that kind of medication again as I was clearly allergic to it. I really don't think I could acutally survive that again to be honest now I am much older (70 now).

    I realise that a colonoscopy is the best way to find get a proper diagnosis and wish I could have it done but I don't think anybody could tolerate that kind of reaction more than once!

    I have investigated other preparations but they all contain the same kind of ingredients.

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