How to find the best Gastroenterologist?

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Hi all, this is my first post and I'm after advice on a possible Crohn's diagnosis and in particular I'd like to know how you've found the best gastroenterologists, or if they're all similar? I'm UK based.

?As with many on here I've been through quite a journey over the last 5 years and have opted for a second opinion in the last year. My Gastroenterologist started with IBS but, after a last minute re-test showing significantly raised Faecal Calproetectin, started to waiver. Another Calprotectin test, Colonoscopy, MRI and capsule endoscopy has led to Doctor not 100% certain. I've had light inflammation and a couple of ulcers around the terminal ileum but not the clear cobblestoning etc which would clearly indicate Crohn's.

The Doctor's exact words were "I don't think it's Crohn's but I can't say it's definitely not Crohn's. If you asked 20 Gastroenterologists 10 would say I have Crohn's and 10 that I don't". Although interstingly I asked after the bad fatigue I experience which clearly doesn't tally with the Crohn's load seen in the small intestine but at my last appointment I've learnt these aren't always directly proportionate to eachother.

Recently steroids (Oral budesonide) taken as a trial have improved energy levels and massively diminshed fatigue back almost to how I felt years ago. Coming off brought all my symptoms back - intestinal and fatigue, and I'm now on a further six weeks to trial the same.

?If I get worse when I come off again - he'll ask for a second opinion. I'm not sure whether to leave him to find the second opinion or insist on introducing my own preference. Tricky to know but opinions would all be appreciated.

Thanks

?Matt

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7 Replies

  • Posted

    I have Ulcerative colitus and have had for several years.  My brother has the same but suffers far more than I do.  With this illness and Crohns no two people are the same, the causes are not the same and the medication etc is not the same.  It is a very hard illness to deal with in all aspects.  I wish you well and hope you get some answers very soon.
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    • Posted

      It's interesting you mention your brother as I have a twin brother but with no signs of IBD. As you say - it's clearly unique for each and everyone. In a strange way, you always have someone in your family who you can relate to and vice versa.

      Best wishes

      Matt

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    • Posted

      Yes it is very interesting. My brother was diagnosed when he was quite young, in his 20's, he is now in his mid 50's,  I was diagnosed in my middle 50's, I am now in my mid 60's and both my Mum and Dad were diagnosed in their late 70's, sadly they are no longer with us but would have been in their mid 90's.  Also looking back at my Nan's health and problems, because little, if anything was known of these illnesses, I believe she had the same.  Her symptons were exactly the same as all ours but it was just put down to a weak stomach. !!!  I hope money keeps going into this horrible disease and hopefully find a cure, the causes or something that will treat everyone.  Hope you keep well.

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  • Posted

    First of all let me say that I am sorry to hear about the way you feel and also about the time it is taking to form a diagnosis..  I have had crohns for 52yrs and I still cannot understand why it takes so long to come to a conclusion on whether or not it is crohns. Although to be fair yiu would be suprised. how many illness involving the gastric tract that give the same symptoms.    52yrs ago they had less knowledge of this illness and there where even less treatments available. And yet it did not take long for my diagnosis. They first of all thought that it was my appendix and rushed me to ahve it removed. It was during this procdure that they found that I was also suffering from crohns, which at that time I have to say I had never heard of.

    ​I think that IBS is just somthing that they come up with when they are not sure what it is.  I sincerly hope that they soon sort you out so that you. can start having the right treatment.

     

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    • Posted

      It sounds like things must have moved on in recent years, but in some ways perhaps not at all. I'd imagine you've seen advances in the understanding and management of Crohns but the diagnosis for some isn't clear cut as you say. I've learnt it's all about probabilities and risk vs reward. I'm just thankful inflammation markers were seen in re-tests although I'd be Sat here feeling lousy and wondering if I needed a 3rd opinion.

      I hope over those 52 years you've found and build a good support network, professionals, friends and families. Matt

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  • Posted

    Hi Matt

    Sounds to me like your consultant is doing all the right things.....well all the typical things to investigate and diagnose your condition. Whether it is Crohn's is also typically vague. Although the steroid treatment is a standard first step in the treatment it's definitely not one you should stay on as the long term side effects are brutal on your body.

    Your description of how you are on reduction of steroids does sound typical to Crohn's. I have had Crohn's for nearly 30 years and the steroids have exactly the same effect on me. However, I had my diagnosis many years ago so at least I know what it is....... But it took over 5 years and emergency surgery to get it!!

    So in answer to your question about Gastroentorologists I would say your current one seems to be doing it right but sometimes fresh eyes and mind can see things differently.

    Not much help I know

    But I wish you well and hope you get what you need soon.

    Hannah

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    • Posted

      Hi Hannah,

      It's always really helpful to hear others journeys and how indecision and delays to diagnosis is normal! I now have more confidence that my Dr isn't particular slow or indecisive.

      Thanks for taking the time out to share your experiences and I sincerely hope the day to day management is working for you, as much as it can, at least.

      Matt

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