Another update (Crohn’s Disease)

Hey there! Scroll by guys if this post isn’t for you 🙂 … but I wanted to share a little update on my Crohn’s journey and I feel a little bit stuck, so sometimes it’s just good to write about it…

I’ve been patiently waiting for my doctor to get back to me about a new drug I was going to trial. I mentioned it here if you aren’t sure what I am talking about. In summary though, I haven’t been great, found a new doctor and he was going to try and get me on a new drug called ustekinumab (it’s a biologic with only a few people in Australia on it so far). This was my last resort before I headed down the track of a colostomy.

Anyway, it’s all turned a little sour. I am a feeling a bit lost and sad. The new doctor told me about 4 weeks ago to sit tight and he’ll put an application in for me to have the new drug and he’ll get back to me. I have been waiting and waiting…. Yesterday he rang and after a long conversation he basically told me I should go back to my old doctor. He had a bunch of reasons why. The thing is, I don’t want to go back. Not because my last doctor was bad at her job, because she’s not, she’s very good at it. But I felt like I needed something new and I made that decision to search for a new doctor with whom I could build a new rapport. I’m 40 years old (well in 3 sleeps I will be!) and have had this disease since I was 19, so I am not an easy case, plus I know I can be difficult to get along with sometimes. But I also know this disease, and I am the one living with it. I really wanted a fresh set of eyes and someone who is prepared to take me on.

Basically, the new doctor says he can’t get me the new biologic because I must be approved based on a particular and specific history chart which my old doctor has. Something to do with a history chart that was filled out to create a score out of 300 about 8 years ago. I don’t really know what that means, but it was something done when my disease wasn’t great and I needed humira. But I don’t want to go back there. I don’t want to be treated there. I wanted new eyes, a new face and I wanted a new care plan.

So after some tears I feel like I have to start again. I can’t possibly NOT be given the drug based simply on where this actual history chart is? Surely a new doctor can get that information?? And I refuse to believe otherwise. Because what happens if my old doctor stopped practicing? Surely any new doctor can gather all my old files and charts?

I feel like the new doctor just thought I was too hard and he’d been scrounging for an excuse to palm me off. Maybe?

Anyway, I am starting again. Sigh. I will have to go back to my GP and get a referral to another doctor. And start again. I saw a great doctor 10 years ago who now lives in Sydney and he was recommended to me again recently so I need to find out whether he can take me on. In the meantime I will have to try and keep well because again I don’t seem to have any proper care. I actually feel like I have been winging it myself for about 12 months now.

OMG is all I can say. Onward and upwards I guess! I am sure there is a doctor out there that will take me on. I am positive of that. This is just another bump.

Thanks for listening today. A ramble feels good sometimes.

♥ KC.

62 comments

  • Casey Powers

    Must be so bloody frustrating!! Surely they can get your files and history sent over for the new doc to peruse?! It’s not hard in this day and age. People change gp’s and get all their history redirected! Sounds like he’s put you in the top hard basket! Back to the google machine, see who other people can recommend and their experiences. Hope you get some answers soon xx

    • Katrina Chambers

      Thanks Casey. I’m sure it’ll all work out. Just another thing to deal with!!

  • Chris R

    Hey K i have sent you a message on Twitter, good luck sweets, hope you get some answers and satisfaction very soon. x

    • Cheryl Mossman

      I just love your posts Katrina – you make life so real. We all face huge challenges in our lives and it helps to share. Please don’t give up! Keep seeking new professional advice and find the right doctor for you. You deserve the best care possible and so does your beautiful family.

      • Katrina (author)

        Thanks Cheryl, that’s lovely of you. XX

  • Jen Clark

    I find sometimes that doctors and especially specialists can either put you in the too hard basket or palm you off cause you don’t follow the symptoms that they think you should. Good luck, sounds like the Sydney doc might be the one.

  • Karen Price

    I’m not sure if the exact process, but you should be able to have your history transferred to a new Dr, even if you have to go through the freedom of information route and yes I think the same Casey Powers, I think they’ve put you in the too hard basket……keep at it, it’s your health and body and you deserve to get the best treatment you can yet and deserve

  • Sharlene Briggs

    Do what you feel is right for you Katrina. I have been recovering from having my gall bladder removed last week and have realized how much I take my health for granted. I cannot comprehend how you have dealt with this for so long. I hope you are able to find the “new eyes” you are looking for and wish you the very best.

  • Wendy Brewer

    That’s a bad experience to have from the new dr, I would feel like he thought it was too hard. I would go to a second new dr and there is a form you can fill in to have all your old files transferred, You can clarify exactly any certain ones you want as well. I just went through this as I have a chronic issue and also needed new eyes and not just a new script for the same thing that wasn’t working, best thing I did, my new dr has been so,patient trying get things for me and we have finally found a drug that gives me some relief to a degree at last . I wish you all the best in what ever path you try. Illness’ like this are bloody hard and no one can really ‘get it’ unless they have lived it themselves. Good luck Katrina, chin up. Xx

    • Katrina Chambers

      Glad you found a good route. That’s great news!! I’ll keep chipping away. It’ll work out I’m sure. X

  • Vivienne Russell

    I’m so sorry that you are going through this. Surely they can get your files from your old doctor? Actually, you can get your files, they are yours!
    Is there a support group in social medialand that you could get referrals?
    Sounds like this doctor just put you in the too hard basket
    Hope you feel better soon, well better than you do at the moment xxxx

    • Katrina Chambers

      Yes I will chatting with people I know and see what comes of it. X

    • Kylie Blazko

      With FOI you can pull your medical files…simple to do but if cost attached and often if over a certain amount of pages it’ll be a digital copy.
      I did it after I lost my Dad.
      Good luck

  • Amber

    I’ve been following your design posts on Facebook for years & never realised you suffer from this horrid disease – I’m 32 & have had UC (Crohn’s ugly sister) since I was 12. It’s a tough existence living with these things, & you don’t get it unless you’ve experienced it.

    For sure, in this day of “the cloud” & modern medicine, I feel like it would be super easy to get your complete file from one office to another. Keep fighting, as I’m sure from living with this thing for half your life, you’re very good at fighting. x

  • Kerryn Woods

    Oh, gosh, that must be very frustrating and upsetting. I hope your GP can help you find a more helpful doctor who can quickly sort things out for you. ❤️

  • Jo Matheson

    Oh Katrina Chambers, that is so frustrating. So hard to find a great doctor. I hope you can get it sorted soon. I never understand the system.

    • Katrina Chambers

      I’m sure there is a “system” to all of this and it’s not an easy one, but there has to be way. X

    • Jo Matheson

      Katrina Chambers I know of a great Doctor but he is in Brisbane

  • Deborah O'Brien

    So sorry, you must be so disappointed….
    But as you say onwards and upwards, it may be a blessing as your new Dr may be just around the corner. Take care xxx

  • Emma Carroll

    Oh that’s awful. Feeling powerlessness is dreadful. Stay focused, allow yourself a little cry or a rant when you need it, and remember you have a power of people behind you! xx

    • Katrina Chambers

      Thanks Em. I’m a bit better today and I know it will sort itself out xx

  • Eloisa 'Ely' Glen

    The files are yours. You can request a copy of your complete file. You might have to pay a fee. I never knew this and when we went ‘doctor shopping’ when we were having fertility issues we would have to start from scratch every bloody time. Then a friend told me that I had a right to take my files with me to whichever doctor I wanted to see. They will try and bluff you so be demanding and keep on at then until you get them. Good luck x

  • Alicia Boland

    I went to 2 GIs (2 put me in the too hard basket as well) before I found the right one for me I also have a Prof GI in Sydney as well between them they’ve been great. I’m also not an easy case been thru most meds/biologics etc too and am waiting for some results after a sigmoidoscopy to see if new med is working ? I also went thru the will they wont they process to get access to med, it was a lot of work by Drs to get thru the PBS to access a med not used widely( or at all I don’t think yet) for UC.I also am not easy to deal with and won’t take decisions lightly it’s my body and I have to live like this day in day out it’s not easy good luck x but you are your best advocate you know your body the best. We have seen the surgeon a few years back but at the time he said no go but depending on next results we may need to revisit him. Who is the dr in Sydney if you don’t mind me asking ? X

    • Katrina Chambers

      It’s a juggle and it’s so demanding. It’ll work out though I’m sure. I’ll message you doctor. X

    • Alicia Boland

      Im sure it will xx thou I know that disappointing feeling well

  • Melinda Drummond

    You know what Katrina Chambers…that just sucks balls. How unbelievably disappointing. Keep well and yes, just one more bump (albeit one you don’t need!) but I’m sure someone awesome will come through for you. Fingers crossed x

  • Nicole Gray

    Hugs for you my friend. You are resourceful and you are powerful because you are knowledgeable. You will find the right doctor xxx

  • Kerry

    Ohhh! Katrina this is quite a setback for you and I feel so sad for you.

    Is there a Crohn’s Support Organisation which might be able to help you out? A colostomy is a big leap – wishing you well and hoping that things will work out for you?

    Go gently… *^_^*

  • Donna

    You almost need a medical degree to navigate the GP world. You need to do what you think is best for you but sometimes the path of least resistance I.e go to old dr to get referral for new drug maybe the easiest way forward. It’s the step back to go forward routine. But you are a strong brave talented woman who’ll find a way forward. And my wish for you on the first star tonight is that way forward becomes easy for you.

    • Katrina (author)

      Hi Donna, you may be right. I will have to think some more about this. Thanks so much for your lovely words. XX

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