Conflicting diagnosis between Consultant and Doctor. Who should I believe?

Posted , 3 users are following.

Hi Everyone

I do apologise for the longwinded explaination below, but I'm hoping that giving as much info as possible will help give you a better insight into what I've been going through, and hopefully you can give me some advice or share your thoughts and comments.

I have been having digestive issues for a couple of years now, that were initially believed to be IBS. I have central abdominal discomfort mainly around my belly button area, bloating, burping, flatulence, and stomach and bowel churning and gurgling, plus a general sense of feeling unwell, very tired and drained. It seems that diet plays an major role in the severity of my symptoms. Plain, bland, low fat and low sugar foods cause my symptoms to ease, yet rich, spicy, fatty, sweet foods seem to aggravate my condition. My symptoms can also come and go in a matter of hours, one minute feeling unwell experiencing most or all the symptoms I have mentioned, then a few hours later they will totally go away and I feel relatively fine again.

My bowel movements remain pretty constant, although I have always had a problem with producing red blood every now and again, and we're talking a lot longer than I've been having digestive problems. As a result of this I was referred for a colonoscopy with biopsies just under a year ago now. The results of the colonoscopy were good, apparently my colon, rectum and terminal ileum looked very healthy, and the biopsies revealed no sign of inflammation going on, past or present. It was noted that I do have internal hemorrhoids though, which the hospital consultant said was the probable cause of the red blood produced every now and again. My doctor also requested some faecal calprotectin tests to be done over the course of a 6 month period. All of these tests came back positive with results around the 250 to 300 mark. My doctor seems to think that there still is a chance that I could be suffering with Crohns Disease. However my consultant has said that with the pleasing colonoscopy results, the fact that I am not feeling a lot worse than I do when I'm at my worst, and that my symptoms and general health feeling can change in a matter of hours, then he very much doubts that Crohns is the cause, especially since this has been going on for over 4 years now. When I questioned the calprotectin results the consultant said that the test is very non specific and can be affected by numerous other influences, plus he said people who take PPI medication, of which I have been taking Omeprazole for a couple of years now, are more inclined to have raised calprotectin levels anyway, and the fact my calprotectin results have remained constant, seems to fit in line with the dosage of Omeprazole I take daily.

I'm now at a loss as to what to do next, the doctor has accepted the consultants diagnosis, although he does have his doubts, and the consultant is as sure as he can be that I don't have Crohns. This isn't ideal as it leaves me feeling like I'm in state of limbo and feeling generally unwell, and just waiting for symptoms to worsen due to leaving possible Crohns untreated, which may never happen as I could well not have it!!

I would be very, very grateful if any of you reading this could give me your thoughts, comments and advice on this situation, and I thank you for taking the time to read this.

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  • Posted

    Hi I had a similar situation. I had a calprotectin level that was in the thousands. It was off the chart high. I had severe inflammation but by time I had the colonoscopy which was 4mnths later it showed mild inflammation. Biopsies showed no evidence of Crohn's. I saw 2 consultants and both said 95% not Crohn's and went by symptoms and not the calprotectin and because it only lasted a few weeks. They said more likely a severe infection. I repeated the calprotectin 7mnths later and it came bk at 219. Consultant said it could be many things like bacterial infection etc.. and ibs can make it slighter higher. I repeated the test 2 more times and both came bk as borderline and told it was time to stop. The consultant said symptoms of Crohn's don't suddenly disappear in a couple of weeks which was wat happen with me. The doctor said they usually go by the symptoms and not the calprotectin although that does help. I was have symptoms that come and go and I don't think that's usually the case with Crohn's. I would go by wat the consultant said as he's the expert in that field and if you have any severe symptoms have another calprotectin test and go bk to the consultant.

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  • Posted

    Hi I had a similar situation. I had a calprotectin level that was in the thousands. It was off the chart high. I had severe inflammation but by time I had the colonoscopy which was 4mnths later it showed mild inflammation. Biopsies showed no evidence of Crohn's. I saw 2 consultants and both said 95% not Crohn's and went by symptoms and not the calprotectin and because it only lasted a few weeks. They said more likely a severe infection. I repeated the calprotectin 7mnths later and it came bk at 219. Consultant said it could be many things like bacterial infection etc.. and ibs can make it slighter higher. I repeated the test 2 more times and both came bk as borderline and told it was time to stop. The consultant said symptoms of Crohn's don't suddenly disappear in a couple of weeks which was wat happen with me. The doctor said they usually go by the symptoms and not the calprotectin although that does help. I was have symptoms that come and go and I don't think that's usually the case with Crohn's. I would go by wat the consultant said as he's the expert in that field and if you have any severe symptoms have another calprotectin test and go bk to the consultant.

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    • Posted

      Many thanks for the reply Eagle.

      Its nice to know that I'm not the only one who has been in this same kind of situation, it has been a rather confusing time and I do still feel quite lost not knowing who's diagnosis to accept. I totally agree with the fact that if Crohns were the cause of these symptoms that they would come and go within the space of hours, inflammation cannot appear and disappear so quickly, its just not possible. My consultant also said that if Crohns were the cause of my symptoms I would feel a lot worse than I do at points, and as I have not had any treatment for Crohns, then the chances of me needing hospital admission at some point during the last 4 years of experiencing my symptoms would have dramatically increased.

      I will take your advice and listen to the consultant and accept their diagnosis, and should there be a change or worsening in my symptoms, then get further investigations under way.

      Many thanks again for taking the time to reply, much appreciated.

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  • Posted

    ok well firstly can I just say I'm sorry to hear of your suffering.

    but what you have described sounds exactly like what I have been through and sometimes experience to this day. and I have crohns disease. it took months for me to finally be diagnosed but we got there!

    in terms of what to do next I'm not too sure what to suggest. if you've had a full colonoscopy that's probably one of the most thorough things you can have done. the way in which the doctor first flagged something was wrong with me was when I had an xray of my abdomen which showed a lot of inflammation. I then had a colonoscopy and a biopsy which confirmed crohns.

    do you know I'd they took a biopsy? if not then itd be worth seeing if you can get them to take one. then they can do tests on it and see if anything shows up.

    hopefully that helps a bit!

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    • Posted

      Many thanks for the reply and comments, much appreciated.

      I can confirm that biopsies were taken from my last colonoscopy and the results came back as normal, no sign of inflammation. According to the doctor performing that colonoscopy my rectum, colon and terminal ileum looked fine and that the whole length of my large intestines looked very healthy, apart from some internal hemorrhoids. This is one of the reasons why there is confusion and conflicting comments between my doctor and the hospital. I also have to say that I don't seem to experience any of the common symptoms related to Crohn's Disease, I hardly ever get diarrhoea no matter how I physically feel, and only experience a small amount of bleeding now and again but not that often at all, which has been put down to the hemorrhoids. I'm awaiting the results of some recent blood and stool tests, for which my doctor will be contacting me today about, and will hopefully come up with the next course of action.

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