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Worrying if I've been misdiagnosed with ibs.

Posted , 4 users are following.

Forestflower
Forestflower

I got diagnosed with ibs when I was 12 (even though I didn't have any tests or scans the doctors said it was that once I told them my current symptoms at that time)

For a while eating less fried foods worked a lot.

Then after about a year I had to cut out white bread pasta and potatoes.

Then all of a sudden about 2 years ago I had a really bad ibs attack with a horrid burning sensation in my instetines and had to have an ambulance through fear that something was really wrong. Turnt out I was anxious which was triggering my ibs to flare up.

Anyway, for those past two years I've had on and off burts of bleeding when passing stool.. occasional very bad abdominal pains, what I will describe weakness In bowl muscles and a lot of nausia.

With ibs I know constipation and lose stools are common but it's permanent, never have a day with a normal toilet habit and do occasionally have mucus in my stool.

Anyway, I've always had on and off fears over the last few years that it may be a twist in my intestines or worse cancer of some sort between my instestines and bowl. But I've always had to calm myself and say "it's just my ibs" as as far as I am aware all of my symptoms are ibs.

But I read this morning a woman died 5 days after finding out she had cancer after being miss diagnosed with ibs for years.

Now I'm worrying even more as my mother and father have both had more than one type of cancer although not hereditary.

I want to go to the doctor and get scans and tests to rule out cancer or other serious conditions but I'm at a loss because I have a sort of health anxiety and I feel like they will refuse to do tests and say it's just my anxiety, when really there could be something wrong.

I really don't know what to do any advice will be appreciated

0 likes, 11 replies

11 Replies

  • pippa58442
    pippa58442 Forestflower

    Posted

    Your symptoms sound like IBS; the bleeding may be from haemorroids or fissures.  Some people do get permanent bowel habit change with IBS.  Everyone is different.  I wouldn't read stories about IBS misdiagnosis; I did that and it made my anxiety worse.  Health anxiety is common with IBS.

    Sometimes doctors diagnose IBS without tests if they recognise your symptoms.

    However, to stop your anxiety, go to your doctor and have a stool sample tested for fecal calprotectin which looks for IBD.

    • Forestflower
      Forestflower pippa58442

      Posted

      Thanks! I'm going to suggest blood tests an ultrasound and even though I'm highly embarrassed, a stool sample test too.

      You're right, i suffer very bad from health anxiety. And I'm hoping even though I'm nervous and reluctant for tests ect that the outcome will end up ending or at least calming my fears and assumptions.

      I'm just dreading a diagnosis of Crohn's disease or something similar.

      Intolerances I think I could handle but anything more serious, my anxiety will reach its heights and they'd probably need to give me a sedative to calm me down.

      My anxiety is very high and dramatised and my physical symptoms do not help lol.

      Thanks for replying

    • pippa58442
      pippa58442 Forestflower

      Posted

      I had two stool tests done for fecal calprotectin and h pylori which were negative.  The only trouble I had was producing the sample because of the severe constipation I had at the time.  I ended up putting my bad back out with straining!

      However, the worst for me was the anxiety with all the negative tests and no diagnosis for three and a half months plus too much googling.  Hopefully you find out what is wrong soon.

  • susand1408
    susand1408 Forestflower

    Posted

    Most of the symptoms do sound like ibs but if there is blood in the motions then you need to go to drs. You could have an infection at the time which will need treating.

    If your symptoms aren't under control you can still ask for further tests. However stress will make it worse. There are some things you can do to help.

    A) keep a food and symptom diary. Can make a huge difference to how the Dr treats you and can also see patterns. Also mark your stress levels for the day.

    If you find they are worse at certain times of the month then it maybe affected by hormones. I have the depo contraception injection which helps as your hormones are constant.

    Try probiotics. I find the wheat based liquid ones better. More expensive and only available online but work so much better.

    Complex fibres can make things worse but you need fibre to keep you regular. I use a Centrifugal juicer which really helps.

    Finding ways to reduce stress. I crochet and knitting but you can also try mindfulness, yoga, ti-chi etc.

    Go for a walk outside each day. The exercise helps your bowels and the vitamin D helps everything.

    Get a good night's sleep. Sleep has a huge effect on your bowels.

    Hope this helps

    An

    Sue

    • Forestflower
      Forestflower susand1408

      Posted

      I've had the bleeding on and off in various amounts for years now on and off. Just thinking it's the result of straining ect but became alarmed when I found I was bleeding when my bowl movement wasn't particularly a struggle and the amount of blood had increased. I tried food restriction a few years back, and all that came of it was that greasy foods were a trigger and I've cut them out permanently. It's hard now though as some time things such as bread and milk and pasta will be a trigger for a few months so I will either replace the whites for browns and seeds ect or cut them out for a while but sometimes they don't affect me at all.

      The same as I have a lot of trouble with eating actual meals even if they are small and often like the doctor advised. I'm constantly bloated which means I can't eat much and when I do I become nauseated.

      I generally try to have a probiotic yogurt once a day or twice a day along with my medications but sometimes they even make me flare up.

      I'm going to push for tests ect when I next see my gp

  • christine63923
    christine63923 Forestflower

    Posted

    Have you been blood tested for gluten intolerance? Tested for celiac? My daughter has had digestive issues for 2 years and took the blood test and we found out she is highly intolerant to wheat, gluten, barley. Since cutting out gluten she is 100% better. As well, because this tends to be genetic, I have cut out gluten. I no longer get the headaches, nausea, stomach pains, loose stool I used to have. Of course, when you cut out gluten and many grains you must intake plant finer from fruits and veg. Some folks with ibs find this difficult.
    • Forestflower
      Forestflower christine63923

      Posted

      I haven't been tested for anything at all. But I have a double appointment with my gp in January and am going to push to have blood tests, ultrasounds and stool sample tests done.

      I suffer with health anxiety and immy ibs is also related to stress so the stress of not knowing if it could be something serious makes matters worse. I just HOPE the doctor doesn't refuse the tests ect. Thankyou for your advice

    • christine63923
      christine63923 Forestflower

      Posted

      I know it is so hard to deal with doctors sometimes. I am the one that had to initiate the gluten intolerance test for my daughter because I felt something was wrong. This was after two years of telling my doctor the way my daughter was reacting to food wasn't right and that I wanted to explore allergies. You know your body better than anyone. Just remember you have rights as a patient. The fact is that you are showing many of the signs of gluten intolerance. You have the right to say:"I want a gluten intolerance test". It is a simple blood test that might tell you what is going on in your body.

    • Forestflower
      Forestflower christine63923

      Posted

      Thankyou, if I have a right to ask for it, can they still say no or say it's just my ibs. ? Because previously I had horrid pains in my ovaries all the time and went and asked for an ultrasound and they actually said that it was probably down to my ibs because it can affect all parts of the body or something.

      I'm going to ask for a blood test for cancer also as both my mother and father have had cancer numerous times and my health anxiety is currently playing on that factor also so hopefully they can take a few blood samples and send them off for different tests

    • christine63923
      christine63923 Forestflower

      Posted

      Look up the signs of gluten intolerance. One is miscarriage/fertility issues, unable to conceive when all seems well, unexplained to docs.
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