Not diagnosed

Okay I'm new here so I apologise for anything wrong.

I have not yet been diagnosed with ibs but I have all the symptom's of someone suffering - mine seems to be brought on by stress and white bread, coffee,pasta ( these are the things I have noticed so far ) when I went to the doctor about seeing if I do have ibs the doctor very 'kindly' said oh yeah it does sound like ibs.

But I wanted to find out if anyone else gets what I get and how they manage ect.

Sometimes, it's so bad that I feel like I'm going to pass out while on the toilet, I become very light headed, feel boiling hot but have goose bumps.

Other times I cry in pain from the cramps and the struggling to go.

I get waves of stomach cramps which come and go until I can get safely to a bathroom when I get these cramps I get chills and hot flushes and have shouted in pain.

I can use the bathroom anything between 3-10 times a day with being in there for 10/20 or even 30 minutes at a time which is very exhausting.

I have struggled over the past three years with working when it's playing up as I do have to use the bathroom so often and for a long period of time, which has resulted in some comments from colleagues.

When it plays up it normally lasts anything between 1 day - to weeks on end which makes it difficult to lead a normal life as I constantly have to plan if a bathroom is going to be around.

These are just a few things I find difficult, does anyone else get any of these? And how do you cope?

12 Replies

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  • fwr.org/giardia.pdf download this and read it . its not IBS .im sick of these NHS GPS diagnosing IBS when its Giardiasis causing the problems ."

  • Your symptoms sound exactly the same as mine and like you I have been diagnosed in the same "yeah, sounds like IBS" reaction.

    Especially the regularity & time spent in the loo (when I'm bad) & cramps.

    I am going back to the GP surgery on the 20th, to see a different doctor to see if I can get this one to take it seriously. The advice I have been given is make a nuisance of your self, beg, cry & if that doesn't work (& you can afford it) try going private.

  • ibs I've had this for years now try buscapan that will help with the cramps white bread does aggregate it certainly and coffee try to drink peppermint and green tea this will be calming for your stomach. I would suggest also to drink bottle water instead of tap water where ever possible. Hope this helps to settle this. Good luck.

  • I'm undiagnosed atm but I too have symptoms that match ibs, going to the toilet up to 10times a day, I get very little to no warning wen I hav to go, recent blood tests showed low iron so with all this going on my doctor has referred me for a colonoscopy, still waiting for my appointment, i really feel for u, go and ask ur doctor to run some blood tests

  • Typical symptoms of IBS. Try initially going gluten and dairy free for 4 weeks. Drink lots of water but leave out caffeine (tea coffee etc) replace these with ginger or fruit teas, peppermint and the like.

    Doing that should allow your digestive system to calm down. If that makes a difference go onto the Fodmaps diet to see if any other foods react against you.

    Get the Monash University app it is very easy to follow with a traffic light system. Start with only those foods marked green for 4-6 weeks then add back in foods by type marked Amber. This should help you know what your digestive system can tolerate

    As it is so hard to get any answers from NHS and to get on Godmaps you will wait forever to see a dietician it is much easier and quicker to do it yourself as above.

    However your GP should refer you to a gastrologist to rule out anything else by various tests.

    You can get various meds to help you through the pain etc but they are not long term solutions and from my own experience mostly don't work although some people find they are helpful

    Good luck

  • You need to get a proper diagnosis as there are several bowel conditions. These can only be diagnosed by having a colonoscopy so you should go back to your doctor and request hospital tests

  • IBS seems to be treated very casually by GPs's and your symptoms (and doctors response) sound very typical. I suggest you keep going back and pester them until you get some answers. IBS may not be life threatening but it is a very real condition and can be life changing for the sufferer and GP's should recognise this. It is usually caused by stress but the stress of coping with the condition causes a vicious circle. At the least your GP could offer you anti spasmodics for your colon which is the main contributor to the pains when on the toilet. The waste is pushed out by peristalsis (contractions) and if you are female they can be as bad as labour pains! The feeling sick and ill whilst on the toilet will be because when your bowels open you get a big drop in blood pressure suddenly and this makes you feel like this (I once even passed out in such a way on the loo,)

    I've suffered IBS for all my life...even recognising now I'm older that I had it as a child, but you can learn to cope with it. If the doctor is still unconcerned, do what I do and research ways to help yourself. Peppermint oil capsules work wonders if you can take them - get the enteric ones, they relax the bowels action naturally. Others like to add ginger to their diet or turmeric for soothing their digestion or aloe Vera. It is not all quack stuff, just natural. Also drink plenty of non caffeinated drinks.

    Ask to be referred for a colonoscopy if you are still suffering....it's your body and you shouldn't need to be in pain. Best of all try to relax. Best wishes, hope this helps.

  • I suffer from colitis and l feel for you, I find wheat and corn are my main triggers. Have you tried giving up wheat and eating wheat free bread and wheat free pasta, you need to find out what your triggers are, keep a food diary to see what triggers yours attack. I used to get stomach cramps and bloating. Hope this helps.

  • Yes i have got all these symptoms but was diagnosed with IBS about 15 yrs ago everytime i get stressed or anxious it starts up as i get older my tolerance over foods i have eaten all my life i think it affects my IBS. It has stopped my social life completely i am probably much older than the people on this site but i find it is a very lonely existence.

  • I was diagnosed with IBS for 5 years and it turned out in the end to be Crohn's disease. I would suggest that you get a colonoscopy and endoscopy to see what is going on. I hope this helps.

    I think that there are too many people diagnosed incorrectly. Better having the proper tests done first then take appropriate medication.

  • I can relate to a lot of what you say and after several years I finally think I'm getting on top of the problem. While the 'typical' symptoms of IBS include pain and urgency/change in frequency going to the toilet, I also experience the sweats and hot/cold flushes like you.

    While the symptoms do sound a lot like IBS, in the UK the clinical guidelines are that doctors should also do a handful of blood tests to rule out other causes, but a colonoscopy isn't really necessary.

    Once IBS has been diagnosed there are a number of treatments that might help. First of all, there are a range of drugs that can help calm the gut and get it functioning normally again. The drugs you take will vary by your symptoms and it can often be a case of trial and error finding the cocktail that works for you.

    Then there are dietary changes. These will also be specific to an individual as we all have different triggers. I've written an article on my blog about the various dietary triggers and treatments for IBS if you want to take a look - patientj.wordpress.com/good... - but broadly I would say that if food like bread and pasta are causing problems, eliminate these from your diet and try the gluten-free alternatives for a while. It sounds like you're constipated, so more soluble fibre (plus making sure you're drinking plenty of water) might help as well.

    There is also the psychological dimension. I had always acknowledged that stress would make my symptoms worse, but I'd always assumed there'd been some other biological cause for my symptoms. However, I have spent the best part of a year in therapy and actually think the IBS is the result of some generalised anxiety that I'd never realised before and making steps to address the causes has really helped to improve my symptoms. Of course, there are medications that can help people cope with anxiety and depression (although it's worth noting that these also have the risk of exacerbating your IBS symptoms). But you may find some form of counselling/therapy could help you as well. It might help you identify the cause of your IBS if it is psychological, but if not, it may still help you manage some of the other anxieties and stress you experience, which will hopefully reduce your IBS symptoms as well.

  • Cut out ant form of plastic packaged soft bread, white or brown. In typical supermarket breads, the bread is cooked in a way that doesn't kill off the yeast. Sourdough bread relieved me of bloating and discomfort - and Polish bread too seems to be always of the sourdough type.

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