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Mystery bowel problems/bowel cancer fears

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Sam1986
Sam1986

Hi. Bear with me here as this is a long story! I’m a 31 year old male who has been going through hell for the past four months or so. At the end of August I woke up one day with a horrible upset stomach; at first I didn’t think much of it but it continued, and then I was getting other symptoms like constant erratic bowel movements, constant loud gurgling stomach/bowel noises and terrible crippling abdominal pain. Over the next 2-3 weeks or so, the problems were persisting and the pain unbearable just under my belly button so I must have visited around 10 different doctors at my surgery, all of whom I didn’t think were really taking my problems too seriously and they all said “It is possibly IBS” without doing any testing whatsoever. I then ended up at A&E with the pain as it got so bad and they just sent me home without doing anything! I then finally got some blood work done at the doctors and everything seemed normal - no anemia, no inflammation shown in CRP test, liver and kidneys working well, and no obvious explanation for my symptoms. I then had an ultrasound of the abdomen which came back clear and a stool test and urine test which showed no infections. Eventually at my insistence, I was referred to a gastroenterologist who I saw at the end of September who sent me for more extensive blood tests and I was told to hand in a stool sample to test for fecal calprotectin, and go for an abdominal and pelvic CT scan. Anyway after a fair wait, I found out all these came back clear. Nothing abnormal was seen and seeing as my fecal calprotectin was normal I was told it was extremely unlikely I had inflammatory bowel disease. Yet all the time my symptoms were changing/worsening  and I developed terrible back pain that moves into my legs and sides while the abdominal pain has lessened slightly. I have been extremely frightened that what I am dealing with is bowel cancer although 20 doctors now or more have told me IBS, but I don’t feel there has been enough tests and I don’t feel reassured. I have lost a fair bit of weight and have tried the low fodmap diet to no avail. It doesn’t matter if I eat or don’t eat, or what I eat, the pain is unbearable and I am in constant suffering with whatever this is. I also have a feeling like I need to go for a number 2 constantly. I have become isolated and my family life is suffering greatly. I have now been sent for a virtual Colonoscopy (CT Colonography) after practically begging for some more investigation but it looks like I will be waiting a fair while for an appointment. The constant pain and discomfort is making my life unbearable and I don’t know what to do.  Everything has come back clear including a CEA cancer test so what should should I think and how do I deal with this constant pain? I know a few people with IBS and they have flare ups and it goes, with this it is constant! Having been told I don’t have inflammatory bowel disease my mind keeps telling me I must have cancer, and I can’t get that thought out of my head. Has anyone got any advice or been through something similar? Many thanks for reading!

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40 Replies

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  • Sam1986
    Sam1986

    Posted

    No one in the medical field seems to take my problems very seriously is my problem, in fact many doctors say “it’s just ibs” without anything to back that up and without appreciation of the discomfort I am going through! In fact the last time I ended up in A&E with severe pain I was told I was wasting their time and to go home. I now have a long wait for a CT Colonography and then a further agonising wait for the results, all while still being in severe discomfort. What should I do when nobody will help me?

    • cheryl52225
      cheryl52225 Sam1986

      Posted

      Sam do you feel sick when you have the gurgling noises in your stomach do you take any anti sickness tablets for it only my boyfriend gets bad nausea we’re he has to grit his teeth to stop himself vomiting 
    • Sam1986
      Sam1986 cheryl52225

      Posted

      Luckily I only have the sickness every now and again, but it gets pretty bad at times. It doesn’t seem related to the gurgling noises which seem to be completely random. I suffer from a terrible dull ache in my back which seems related to a feeling that I need to go for a number two even when I don’t and the dull ache sometimes radiates into my sides and legs, this gets unbearable.
  • cheryl52225
    cheryl52225 Sam1986

    Posted

    Go to your doctor and ask him to refer you urgent for a colonoscopy as your having blood in your stool tell him you do even if you don’t tell the doctor you  think you have cancer or crohns how can any doctor tell you you haven’t got ibd you need a colonoscopy and they take biopsies so how they can tell you that you haven’t got ibd is beyond me my boyfriend has had colonoscopy blood tests all normal apart from the calprotecin what was 475 they said he might have crohns but think he’s got ibs and constipation so don’t let them fob you off tell them it’s making you suicidal and if you do have cancer you will hold them responsible have you got anyone to go with you to see your gp 

    • Rubes123
      Rubes123 cheryl52225

      Posted

      They where very quick with my colonoscopy. The doctor was very shocked when I told him my symptoms.
    • cheryl52225
      cheryl52225 Rubes123

      Posted

      My boyfriends gp told us they are reluctant to send patients for a colonoscopy unless they have a suspicion of cancer as my boyfriend was losing weight and having altered bowel habits plus six visits to A&E in the space of three months this is why my boyfriend had a colonoscopy classsed as urgent he had to wait two weeks for the colonoscopy but it was normal glad it’s normal but frustrating when you haven’t had a diagnosis gastroenterologist keeps mentioning ibs but this doesn’t explain the high calprotecin of 475 

    • Rubes123
      Rubes123 cheryl52225

      Posted

      IBS is just a easy diagnosis to give anyone with bowel problem's. A friend of mine had a cyst on her ovaries got told it was IBS She looked pregnant because of bloating.

      Has your partner not had MRI scan?

      Its very frustrating, because you need answers. Be easier to accept being told its IBS if you felt they investigated properly.

      I been told its IBS, I get bloating, empty 15 times a day normally, pains (even after drinking water sometimes) I have ulcers inside bowel, get mucus.

  • cheryl52225
    cheryl52225 Sam1986

    Posted

    It sounds like crohns to me if your on Facebook join the crohns and colitis uk forum lots of people on there who have similar symptoms to you and my boyfriend my boyfriend feels sick most days he feels like he needs the toilet all the time 
    • Sam1986
      Sam1986 cheryl52225

      Posted

      Well yes it could be chrons but wouldn’t you need to be showing a raised fecal calprotectin for it to be that? My calprotectin is normal supposedly. I’ll check the group out :-)
    • cheryl52225
      cheryl52225 Sam1986

      Posted

      No I was speaking to somebody on Facebook on the crohns and colitis I’m forum there’s people on there who have had normal test results only thing that found the crohns was capsule endoscopy 
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