I have been told my abdomen & pelvic pain is IBS have had various tests Gastroscopy, colonoscopy & laparoscopy, but since October have had

pain 24/7 feels like everything is swelling or being squeezed/twisted have tried Buscopan and cutting out various food groups, also invested in Symprove no joy, makes me question is it IBS any advise welcomed would love to have my normal feeling tummy back.

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  • You say you've tried cutting out food groups, but have you tried a full-fledged low-FODMAP diet which initially cuts out 5 groups in one go? This is very successful for a lot of people and well worth a try.

    Have you had fructose/lactose malabsorption and SIBO tests?

    If you're diarrhoea-predominant, it's also a good idea to have a SeHCAT test for Bile Acid Malabsorption/Disorder whch presents with the same symptoms as IBS-D but is easily treatable.

  • Hi Roz think my earlier reply failed do here we go again, I cut out dairy & wheat but found I was really struggling at lunchtimes, I paid to have the York Intolerance test done which came back Dairy/Yeast & Eggs but am now hearing that this test is not conclusive! Not sure how I go about getting the tests u mention done. I don't have diarrhoea, don't hi as regular as I did, this had all started since I had a miscarriage in May 2012 and a severe bout of diarrhoea in the Dec immediately after eating a prawn cocktail bizarre! Mx

  • No, in my opinion those York tests for intolerances are a farce as the results are almost identical for everybody. If they were that easy to do, I think the NHS would be doing them and so save itself a lot of money.

    You can ask your GP for all the tests I mentioned as they're readily avaliable at most general hospitals.

    You're right about IBS being bizarre, medics obviously think so too as it's the label they pin on all gastric disorders for which they can't find another cause and we get left to deal with it ourselves. It seems that some GPs/gastros try harder than others though.

    The FODMAP diet is well worth trying. Not quite sure what you mean by 'struggling at lunchtimes', but If you mean you're stuck for something to eat at that time without wheat, try crackers/tortillas made with corn and/or rice.

    Roz

  • Hi Roz I was struggling with the non dairy/wheat mainly at lunchtime, ate lots of Jacket Pots, am currently on a non-fibre diet I went with my mum last week to see a Gastro doc he suspects she has IBS and has recommended this diet so I thought I would give it a go he is also going to do a CT scan just to be sure, I asked my Gastro doc for a CT he refused!

  • Yes, high fibre is a real problem for a lot of IBS-ers and as jacket pots are full of it they'd certainly give you a problem.

    I still highly recommend the FODMAP diet as it's so successful for lots of people. It initially cuts out 5 carbohydrate groups and what's left are mostly low-fibre foods - hence one good reason for its success rate.

  • Roz are u still a sufferer do I need a dietician for the FODMAP? In a way I wish I had other symptoms ie diarrhoea as that would be more of a certainty that it is IBS thanks again!

  • No, whatever you do don't wish diarrhoea or constipation on yourself, believe me you're better off without either! I understand your concern about a correct diagnosis, but as you've had cameras up and down plus a laparoscopy, it sounds like IBS (whatever that is).

    Yes I do still have IBS, the best most of us can do is find a management plan. This is usually dietary and/or some sort of medication. Some people find alternative methods, such as hypnotherapy/relaxation techniques etc work although they don't do me any good whatsoever.

    I seem to have Bile Acid Malabsorption (which is still classed as IBS) and which I mentioned earlier in this thread. I control the diarrhoea (D) it causes with cholestyramine. However, as I don't suffer from D all the time and therefore don't always need to take that, I eliminate certain foods from my diet to control the other symptoms - pain/bloating/wind etc. By doing the FODMAP diet, I discovered that my problem lies mainly with the polyols group (the P in FODMAP) plus a few other foods.

    All NHS dietitians are now fully trained in FODMAPs and you should be able to get a referral from your GP. If you can't, it's perfectly possible to D-I-Y, it's not rocket science. I did the diet long before the NHS got behind it and can point you in the right direction for the best info if necessary

    Roz.

  • Hi Roz, been in agony again today, been in touch with Gastro doc he is going to book me in for a CT scan which I asked him to do last time I saw him wants to see me on Monday bit of a waste of time why he just doesn't see me after the scan would make more sense. I so need to be sure nothing is being missed as I was wrongly diagnosed with IBS in 1998 suffered for 3yrs with Endometriosisthought that was bad but did have good days & bad days not 24/7 that's why my husband was stunned when I went in for the laparoscopy that it was all clear he was convinced. I'm still on the low fibre diet so will continue and will defo look at doing the Fodmap. Thx Mx

  • Sorry to hear that the pain is so bad, I hope your scan gives you some answers. Let us all know how you get on.

    Best wishes Roz

  • Thanks Roz!

  • My GP diagnosed me with IBS as all other examinations are clear.Mine is pain predominant,No D or C at all.Ive done fod map no better.Im now looking into I V S .I really tick a lot of the sympton boxes for that.I mentioned it to G P ,hes not interedted at all so Im on my own.Have a look at it Meercat ,I V S ,its a valve on the right hand side that can stay open or closed.Apparantly a lot of patients are miss diagnosed with I B S

  • Hiya thanks for the reply not sure that mine is the same pain is not just in the one place throughout my abdomen & pelvis. Good luck hope u get sorted.

  • My symptoms are quite similar to yours.

    What is I V S?

    If you don't mind are you of a similar age as mine?

  • You say you don't have diarrhoea, do you have constipation then, or is your main symptom pain? If it's only pain, I'd suggest you go back to your doc and ask to be referred to a pain clinic, it could be nerve pain maybe? The digestive system has its own nervous system to control peristalsis etc (the movement of food through the gut). The other things I'd suggest are cutting out caffeine and alcohol, and drink plenty of water. Also, have you tried mebeverine (colofac) as this eases spasms, and also amitriptyline (an old antidepressant drug) is really useful in low doses for IBS; it helps with the pain. Good luck!

  • Hiya pain is really the only symptom 24/7 and also lots of noise at times, have tried both mebeverine & amitriptyline no joy! We were hoping to try for a family again wanted to get it resolved or at least an improvement through diet only seems to be getting worse

  • I would definitely try the FODMAP diet. You can check out my post on it here: mylifewithibs.com/my-fodmap...

    I would also recommend trying meveberine as mentioned above, and if you get no joy from this then maybe consider dicycloverine hydrochloride. I've been through most available meds over the last 2 years and the only relief I've had from pain has either been with dicycloverine or lots of codeine, which is not recommended! I used to have severe symptoms every day and I still do during flares, but the FODMAP diet has been the only thing which has reduced my symptoms from daily to 3x weekly. I've not been on the FODMAP diet for a huge amount of time so hoping as time goes on, this will improve and my symptoms will reduce further. Good luck!

  • Thanks for the advice am going to see how this non fibre diet goes & ask my Gastro doc again for a CT scan as not happy trying for a baby in all this pain but time is not on my side either had a miscarriage in 2012 we don't have any children and I'm 43 this year

  • I have tried everything including the medicines you have mentioned.

    Trying the FODMAP diet - downloaded the app. - does not seem to be too helpful either.

    Symptoms seem similar to Meerkat 11971.

    Any suggestions?

  • Hi Roz Denvajade here, picking your brain as you seem well informed. You may or may not have read any of my blogs I have RA and been ona chemo drug weekly for 7 years, about 12 months ago developed a nine month preg stomach(not a good look at 61) doctors were shocked convinced I had liver cancer, after 4 months of continual tests for every caner know to man still no solution to stomach, though found to have the beginnings of bone marrow cancer. I cannot eat vege, except pumpkin and sweet potatoe, I cant eat fruit, meat or gluten or lactose and still have incredible bloating

    some doctors say it must be ibs, saw a new doctor last week who went"oh my god trish you present yourself as having ovarian cancer" and got in a panic but I have had this for a year and even though I don't eat much have put on weight. any ideas please?

  • Do you have pain, diarrhoea, constipation or nausea? I ask, as I have a close friend who suffers from the permanent bloating you describe (she's 57), plus pain (often intense) and nausea. After 18 months, it's now been discovered what the problem is and she's awaiting surgery to correct it. If your symptoms are the same as hers, I'll pass the info on to you.

    Roz

  • Hi RozB I go between constipation and diarrhea, I take medication for nausea, the pain is only bad if I am huge, presently not nearly as big with gf diet, no lactose, and nearly no food. thanks for your reply I appreciate it. Trish

  • Hi Trish,

    The condition my friend has is called intussusception, where part of the bowel telescopes into itself. She too was diagnosed with IBS and it's only after months of plugging away, and an exploratory op, that she now has an answer. Scans, barium enemas etc didn't show it up. She's now awaiting surgery to correct it.

    You may already have been down this path, but probably worth investigating if you haven't. It's a rare condition in adults apparently, but common in children ... and dogs!

    Roz

  • thank you so much for your reply, will look into it and keep you informed. cheers

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