Advice pre-consultant visit

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advice pre-consultant visit

Ok, as some of you will have read, I've been causing the doctors trouble!!
We know I have Crohns, we know pentasa and steroids now don't work for me anymore.
The consultant suggests the current state of ridiculous pain, nausea, vomiting, weight loss (17kg in 6 weeks), bleeding and mucus is due to IBS not Crohns because my MRI and bloods came back normal.
I have dutifully taken the IBS meds he prescribed. No change. I am sleeping better due to amitriptalinie (?sp) but thats about it.
I'm going to ask for a colonoscopy as I've only had flexisig before now.
I'm going to request to try Crohns meds too. But which ones? He can't give me biologicals because the NICE guidelines won't allow . . . any suggestions on what might work? At this point, I'm prepared to try anything!!
 
They will most likely turn to prednisone. It's cheap, it works. Yes, it can be dangerous but it beats being curled up on the floor like a cocktail shrimp. For years it was the only thing that worked for me.

Why is the doc saying it is IBS if they have already determined Crohns? What you describe is classic Crohns. That would drive me batty! I would demand (not request nicely) more extensive testing. And I would corner the doc to explain why he now believes it is IBS (which is bull) vs CD!

Good luck!
Michele
 
Yes, diagnosis of Crohns 5 years ago. But because my bloods are normal now and the MRI was fine, he 'suspects' this is related but not Crohns specific. Gah!
My disease has become steroid resistant, so no more 'roids for moi!!
I'm absolutely desperate. Surely, at 25 years old, I shouldn't be reduced to feeling like this and taking (so far) 10 weeks off work this year!
 
I would agree with all of the above!
If Pentasa isn't working then Aza or 6MP would most likely be your next shot- but these can take up to 3 months to reach a theraputic dose, so pred's usually thrown into the mixing pot to help out for a while until the new meds kick in.
As for your bloods being normal- mine are too and I'm about to have my colon ripped out due to the severity of this flare. Bloods aren't always good indicators of what's going on inside!
Time for some new meds and a new gastro I think. Wishing you all the best tomorrow x
 
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Ahhh, the NICE guidelines, interesting how the acronym is 'nice' huh? The guidelines certainly aren't!!
Ok, to get biologics I need a) raised CRP, b) to be in flare x% of the time (not sure of the stat there) c) to have tried 5asa compound, steroids, immunosuppressants and failed with all of the above.
Unfortunately, I am not a human flowchart and don't fit :(
Crazy, but this is the restrictions they have!!

On a seperate note . . . anyone know if theres a specialist Crohns expert anywhere in the UK? Sure I'd prefer the north, but I'm fast running out of options up here!!
 
Not too sure about a Crohn's expert, but when I was having problems a few months ago, my GP was thinking of sending me to St Marks in London.(He said it was the best hospital in the UK for gastro.) I never followed it up though- just fighting the NICE guidelines was enough!
 
Looks like azathioprine is your next stop. The nice guidance does say you have to have tried standard immunosuppressants (aza,6mp, methotrxate) and are intolerant or them or they don't work. Also active disease but raised crp is not stipulated as there is a sub group of people who never have raised inflammatory markers despite active disease. Looks like welsh bird and I are in that club.
I really cannot understand how any gastro would say weight loss, vomiting, bleeding are IBS- you need to pin him down and ask him why you are losing weight and why you are losing blood- if he cannot give you an answer and treat you appropriately then ask for a second opinion.
 
LMFAO@ Joan- your old GP comment just made me spit my coffee all over my clean floor!! My laugh of the day, can now go to bed smiling! Xx
 
Oh, Joan, what a wonderful line! Gotcha beat on the spilling part, Andrea. I had just taken a huge bite of my sandwich! Now I need to clean off my computer screen!

Monkey, if Joan says that is the best, listen to her! She has been through hell & lived to tell the tale buddy.
Good luck,
Michele
 
So, we saw the doc. My weight is stable, hurrah! 17kg below what it needs to be, but stable.
Went armed with my list of questions and my mum.
My doc assures me that CRP's are a really strong indicator (hmm, we all know different). We asked why I hadn't been booked for a colonoscopy, he said he'd prefer to wait til i'm stronger as it might cause me more pain. So, it might make me worse for a few days but might give us an answer . . . . I jumped down his throat and requested it asap.
Interestingly, he tells us today that the MRI was to look at only my small intestine and they did no imaging of my large.

So, in summary, right sided pain, we've done a flexisig to test the left and top and an MRI to check the small but we're avoiding doing any tests to look at the bit that actually hurts . . . .

I've a colonoscopy booked on monday! Woop! :)

Thanks for your ideas and assistance! I shall definately be trying your Doc Astra if this doesn't work!! ;)
 
"So, in summary, right sided pain, we've done a flexisig to test the left and top and an MRI to check the small but we're avoiding doing any tests to look at the bit that actually hurts . . . . "

Good god! Glad you stuck to your guns, pard! I hate to say this as it sounds cruel but enjoy your colonoscopy! I think I would if I were in your place.

Good luck,
Michele
 
I had my scope yesterday. I'm sure you will all be shocked and suprised . . . .
it shows, wait for it, INFLAMMATION!! where?? oh, in the area of the pain! Apparently inkeeping with Crohns, thankyou very much, I wasn't making it up!

Got to wait for biopsies to see if i'm suitable for biologics now.

I think thats a 2 fingered salute in the general direction of the medical profession!!

xxx
 


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