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 …
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.
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Comments
Kim Jenkins
Maybe he wasn’t the “right door” for you Katrina. I hope you find a fabulous new Dr soon. Xx
Karen
When you move to a new doctor you absolutely can move all your records from the old doc to the new one. Write a letter to your old doctor requesting all records be moved to your new doctor of choice, also make a special request for the chart you need as well. Put a date on it that it needs to be done by and ask them to confirm in writing once it’s done. It’s your life and your health! Wishing you the very best. xo
Katrina
Thanks Karen, I’ll keep trying 🙂
Mary Asker-Carroll
Oh Katrina, I’m so sorry your going through this, my daughter has the same disease, she is at RCH at the moment and they are preparing her to move to a new hospital and drs, it’s very scary for all of us, you are allowed to rant, it’s good for the soul, I hope things turn around and you/drs can come up with something that works, sending love your way, your an inspiration to a lot of people ❤️
Mary Asker-Carroll
Hi Katrina, there was a show on ABC last night -Ask the Doctor about the gut, that might be of interest and Dr Michael Mosley was on Insight a few weeks ago which I found interesting, he also has a book I have just purchased- The Clever Gut Diet which I plan to read in next few weeks, I’m likely what I have read so far, again good luck xo
Nadia
That’s so frustrating! I hope you find an amazing new doctor and that it all works out for you. I have Crohn’s too, was diagnosed at 19 like you and am of similar vintage. It’s so frustrating having to constantly advocate for what you new on top of being exhausted!
I did the “out of 300” test years ago too and didn’t qualify for humira, it’s so frustrating to be reduced to numbers. Good luck!!
Katrina
Hi Nadia, hope you’re feeling ok!! X
Bec Senyard
So sorry to read this Katrina. Sometimes getting it all down can help with the emotions of it all. I pray you are able to find the doctor you need. Clearly the doctor you’re seeing wasn’t the right one after all and you weren’t to know. You’re one of my fave blogs to check in on every now and again. The right doctor will come into your life, I’m sure of it. xx
Katrina
Thanks Bec for your kind words. X
Dianne M
Hi Katrina, I have had Crohns since I was 19 too but had part resection then am now 51 and finally experiencing way more good days than bad. My meds for the past couple of years are Mercaptopurine (as could not tolerate Azathioprine due to alopecia, bad nausea etc) Pentasa (slow release mesalazine) and the usual B12 injections, Folic and Ferrograd(iron). I wish you the best of luck in finding a doctor that can help you, I know how hard this is but hang in there. Take care and thanks for sharing your journey x
Katrina
Thanks Dianne. I am glad to hear you are doing better! That is such a relief. XX
Rebekah Myers Manwaring
https://www.facebook.com/groups/1538777016415756/
Rachel Watt
Sean Powell Tiffany Powell
Sarah
Hi Katrina,
Sorry to hear that you have had this setback. I am not an expert however I think it is important to have a medical team who you are comfortable with so I hope you can get into the Sydney based doctor.
My understanding is that you can request copies of your medical files being transferred to a new doctor. If not would your GP have a copy of the old results as part of the communication with the old specialist?
All the very best and I hope you don’t mind that I commented on something so personal
Sarah
Katrina
Thank you for ready and commenting Sarah! I will keep trying and see what I can come up with. XX
Tanya Rowe
Catherine Livingstone !!!!!!
Bernie Rowe
To be honest, it sounds as if you are better off without this new doctor, you were obviously too hard for him. I also have chronic issues and sometimes you just feel like a hypochondriac. I think the internet should be able to offer up some recommendations, its such a vast wealth of knowledge and information. I wish you all the best on your journey <3
Leeanne Hunt
Sorry to be reading this your files are you files so they should hand them over with a signature
When l decided to get a second opinion from another upper gi specialist l saw him then he rang the other specialist to get my records been with him ever since
All the best Katrina
Maureen Ellis
Hi Katrina,
I cannot believe what you are going through with this Crohns and to think you have had it since you were 19 years old. You are an absolute inspiration! I think you definitely need to find the doctor who has moved to Sydney. You or he must be able to get your old records from eight years ago and it shouldn’t be that hard. You seem to have faith in this doctor and you can’t be winging it any longer. Bite the bullet now and get an appointment with him as soon as possible. In the meantime, I am sure I speak for many others when I say we all enjoy your blog so much and if we need to wait a little longer for it, then we will. Your health and your beautiful family are the most important things.
Katrina
Thank you for your kind words Maureen. That’s so lovely. Yes I will keep going and I am sure it will all work out! Just a another bump in the road. XX
Liz Russell-Mayfield
http://www.mcnsw.org.au/page/old-policies/medical-records-patient
Kristy Clarke
I’m going to read this in the morning… I’m off to bed now. I might just have some info that may interest you… if I forget, please remind me!
Ginette Amato-Nardi
Hi Katrina, my specialist is also in Wagga and I tried lots of different medications, many making me feel worse, and was told that I may need surgery. So I tried a lot of natural products and discovered a product called ‘Heal your Gut Diatomaceous Earth’, you can get it from the health food shop. This is an amazing product and my saviour!
Ness
You don’t want a dr that puts you in the ‘too hard basket’, and you can get your records sent to any doctor. I had to search around for doctors when they thought I had IBS. I knew it wasn’t that and it was something I was eating, but they just keep giving me steroids. I became very forceful and demanded the tests. Turned out I was right. I felt so annoyed.
Hunt that Sydney dr down and get on that medication. It’s their job to help you manage and monitor your disease. Be strong with them. They’re not the ines living with it, so find one who will listen and help you. Good luck, Katrina. I can only imagine how frustrated and desperate you must feel to get on this medication.
Ness xx
Margaret
As a fellow gut sufferer, I get you! I too feel a little frustrated with conventional medical people. I recently left a gastroentrologist’s office poorer and not really wiser . There is weird and wacky and useful information online – such as the FODMAP diet from Monash University. Beware of Michael Mosley’s book which does provide some useful general gut detail, but his real life Crohn’s patient eats hookworms to improve! Online I have sifted through SIBO and leaky gut information (Pimentel) which have really helped me move forward. The hardest thing (which I think you’re feeling) is rudderless. Hang in there. I am going to try either the Specific Carbohydrate Diet or the Auto Immune Protocol to try to heal myself. I very much hope things improve for you.
Maree Burden
Yes….thanks for sharing your journey and educating me, over the years, about what it’s like to live with a chronic disease. I could say that I wouldn’t have a clue what it would be like, but because you’re sharing, I’ve had a glimpse. Xx
Maree Burden
And..happy birthday to you. You’re forty and fabulous!