Seen a new consultant today need help...

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MrsMoore

Joined
Feb 13, 2014
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Hi everyone, I'm after a bit of advice...
I recently moved from the uk to sydney Australia. I have just had an appointment with a gastro consultant today. She really upset me. She told me that she didn't believe that I had crohns even though I had provided a letter from my uk consultant outlining my diagnosis and treatment and test results. I do understand that I do not have typical crohns symptoms which is why it took 14yrs to diagnose and 3 different consultants until I found one that believed it wasn't all in my head as I had been told previously.
I had just been diagnosed with bile salt malabsorption, I tried to discuss this with her but she told me she hadn't heard of it and it wasn't something they test for in Australia so she was unwilling to help with that.
She was also concerned that I had been on long term cocodamol for pain relief and wanted to take me off this. I told her that cocodamol was my lifeline when I was in pain and would regularly end up in hospital without it.
She recommended I try ibuprofen for pain which my U.K. consultant adviced against in people with Crohns. When I told her that she said if I wasn't willing to try it then all she could help with was breathing techniques.
She wants to do all the tests again from scratch. I'm so worried about it as it took so long to go through this all in the first place. Do you think I should ask to see another consultant?
The reason I went in the first place is because my gp admitted he didn't know much about crohns management and felt I should have a consultant over here. I was very intimidated by her and I am now worried about coping without pain relief. Does anyone else manage their flares with anything different they can recommend. Or should I just put my foot down and ask to see a new consultant? Thanks for your support
 
Wishing you the best.

I'm not familiar with the health care system in Austrailia. Is it possible to ask to be refered to a specialist in crohn's? I understand there are different variations of this disease, and not all should be treated the same. Perhaps you have an unusual variation of crohn's. Sorry I can't be of more help.
 
Our system vary some what state to state. I am in Victoria. Are you seeing a private or public GI?

Your GP can write you a referral to a another GI. I would be being getting a second opinion, mainly because Ibuprofen is not recommend.

What medications are you on?
 
Hi MrsMoore

I'd get another opinion. To have to go through all the testing again doesn't sound right. My daughter is in the process of moving on to an adult GI and all they needed was results of all her testing.

For pain relief Buscopan usually works for my daughter. You can buy it over the counter but please ask your DR.

All the best.
 
Hi all thank you for your responses.
I am in NSW, the doctor I saw today I think was private, I had to pay but can claim part back on medicare. It was a private hospital.
I'm on 2g of pentasa, 30mg of lanzoprazole, b12 injections every 3 months, 5mg folic acid and buscopan and cocodamol when I need it for pain which is pretty much everyday at the moment.
I am struggling a bit working out how the system works here. I got told I have a high cholesterol due to the bile acid malabsorption which I'm worried about and no one seems to want to treat it cos they don't know about (gp and today's consultant) I know it can lead to other problems if left untreated.
Thank you for your help everyone I really do appreciate it. Feeling very alone at the moment!!
 
Also just to add about the cholesterol I'm usually a fit and active 28yr old with a good diet. So I doubt it down to any of those factors. And my uk consultant said one thing to watch with the bile salt is a high cholesterol.
 
Hi MrsMoore,

Where is your Crohn’s located?

Whist I can understand a new consultant wanting to do their own testing that is no reason to be so dismissive of what has been done previously. Based on what you have said and what you have stated the doctor has said then I would be seeking another referral and preferably to a gastroenterologist that has an interest in IBD. I would look to the big teaching hospitals…Prince of Wales, Royal Prince Alfred, Royal North Shore, St Vincents, Westmead, St George Hospital. Look at their websites and to their gastroenterology departments, look for a further breakdown and see if they have IBD units and then the teams that run them, ring for information about the doctors. You should find that the majority of these doctors will have public as well as private patients.

In Australia an appointment that is attended through a hospital clinic is bulk billed via Medicare. Almost always specialists seen in their private rooms will attract a fee that is partially subsidised through Medicare.

One the concerning statements you have made is that you are in pain in everyday. How long have you been on your current medication regimen?

Dusty. xxx
 
Hi dusty cat,
Thanks for your advice it is greatly appreciated!
I've just looked and found one at St Vincent's with an interest in ibd so I will call my gp tomorrow to sort it out. I don't trust many people when it comes to my health after previous experiences.
My crohns is in my iluem and my stomach I've been on pentasa for 2 months now, I started it after 4 months of steriids which really helped and got rid of most of my symptoms. Since being on the pentasa it has gone back to almost as bad as before I started the steriods.
I'm struggling to work at the moment and my sleeping pattern is all over the place due to being up in the night in the bathroom so that doesn't help my ability to cope with it all. I'm very tearful about it at the moment. If it wasn't for my amazing boyfriend out here (the reason I moved) id be back on a plane back to the uk!
 
This group is wonderful. I don't know how it took me so long to find it but I'm so grateful to everyone's support. Xxx
 
I'm not surprised by some of the problems you have with this doctor, not that that makes them any easier for you to deal with. Co codamol I think contains codeine, which is addictive so some doctors will not be comfortable providing it for a chronic condition. It really seems to come down to the individual doctor's preference rather than the pain levels of the patient (at least that's how it seems from my experiences and hearing about others').

I have always found that doctors like to start from scratch and do their own tests. That even happened when I was transferred by ambulance from one hospital to a more specialised hospital with a blocked intestine - I got to the second hospital and was told they were going to repeat the tests just done at the first, and the reason they gave was that they just wanted their own. Every new consultant seems to feel the same way.

I would not keep seeing this doctor, because she clearly just wasn't the right doctor for you, she didn't share your concerns. I think you may well be able to find a doctor with a different approach to painkillers. But you may find that most doctors do want to test you again. Though this wouldn't be a bad thing if you felt confident the doctor would try to help you regardless of test results, and at some point you will need tests done to see if things have changed anyway.
 
Hi, yes as said in some previous posts, its normal that a new doctor wants to make her own evaluation of your case and redo all testings. With all your reports on hands, it shall give her insights on where to start depending on your disease location. If no signs of disease activity are visible on tests (i.e you are in remission), a GI should at least refill your current medication (pentasa), trusting the previous UK GI.

consider asking your previous GI to call your new GI to discuss your file. Doctors can do that .

However, if she already said she doesnt believe you have crohn's, thats a bad start in building a trust and confident positive relationship with her imo. I'd suggest you meet another GI as you will need one for long term years management, someone you feel comfortable with.

on top of it, proposing the ibuprophen was a really bad advice...
 
Last edited:
MrsMoore said:
My crohns is in my iluem and my stomach I've been on pentasa for 2 months now, I started it after 4 months of steriids which really helped and got rid of most of my symptoms. Since being on the pentasa it has gone back to almost as bad as before I started the steriods.
I'm struggling to work at the moment and my sleeping pattern is all over the place due to being up in the night in the bathroom so that doesn't help my ability to cope with it all. I'm very tearful about it at the moment. If it wasn't for my amazing boyfriend out here (the reason I moved) id be back on a plane back to the uk!
Click to expand...

Welcome Maxine!

This sounds concerning to me, as if you got better after the steroids but then flared when only on pentasa it's sounds like you need to go on stronger meds to control your symptoms as pentasa isn't doing enough
 
When you ring, Maxine, make sure you explain to them that you need to be seen ASAP as you are flaring and in considerable discomfort. :ghug:

Unfortunately when it comes to Crohn’s Pentasa used as a maintenance monotherapy isn’t very effective at all. It does work for some but they are very few and far between. :(

You will likely find that since you are flaring the doctor will want to do scopes, imaging, etc. This is often normal procedure for an established consultant and even more so for a new one. So prepare for that. :hug:

Good luck and keep us posted with how you are getting on.

Dusty. xxx
 
Thank you everyone. It really helps to speak to people that know what I'm going through. I think I'm going to ask to see another consultant that has an interest in ibd. I don't mind having to have the tests again as long as I trust the consultant. I'll keep you updated. Pentasa is the first lot of meds I've had after the steriods as I haven't been diagnosed for long so maybe they need to increase dose or try something else.
 
I everyone, I spoke with my gp yesterday, he's very nice. He admits he's not great with crohns but is keen to get me in touch with someone to manage it for me so he has referred me to a consultant at St Vincent's hospital who has an interest in ibd. I'll be seeing her in a couple of weeks. Fingers crossed it goes a bit better! Thank you for all your help xxx
 

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