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Advice for hospital appointment please :)

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Ulcerative Colitis
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Posted 7/15/2009 5:43 PM (GMT 0)
Ok so I'm going to see my consultant on Mon...the Azathioprine doesn't seem to be having any effect and so I'm intrigued as to what the next option is. As you may have read on previous posts my IBD nurse has mentioned Methotrexate as the next option but that is not something I'm happy to take.

I just feel as if I'm getting nowhere with this, and the problem is my consultant does not have the best bedside manner, and whilst he is fantastic with his knowledge of Colitis he seems to try to drum into me that Proctitis does NOT make a person feel ill, it is merely an 'inconvenience' - I know that to be complete rubbish. I just don't feel he takes me seriously enough. I sometimes see the IBD nurse who is fantastic and completely understands how I feel...is it worth asking to see her rather than the consultant?! I just don't want this to cause a bad relationship between me and him.

And also my occupational health nurse at work has offered to write in a letter to the consultant to tell him how much it is affecting me at work and for how long - time off sick, reduced hours etc, with the hope that it'll enforce to him that its affecting me as much as I've been saying. Do you think this is worth doing?

 

Posted 7/15/2009 5:49 PM (GMT 0)
By all means get some documentation from your employer. This is kind of ridiculous that this doctor doesn't believe you can be so bad off. I had my colon and rectum removed due to chronic rectal disease. It can be that bad. I also would not have taken methotroxate; you have to draw the line somewhere.

Sue
Posted 7/16/2009 1:17 AM (GMT 0)
     Oddly, my GI doctor said that even though my ulcerations are located only in the rectum, they can make one feel utterly miserable.  He sure hit that one on the head!  I've been suffering with UP for almost eleven years and guess I can consider myself lucky that it hasn't traveled further into my colon, I feel just awful!  My prednisone was decreased to 35 mgm today.  He actually started me at 20 mgm (hates me being on the stuff), but 20 never did do anything for my condition.  That was around June 11th.  My condition worsened and he had to increase it to 40 last week.  I also take 100 mgm of 6MP, which already has lowered my white count to 3.1.  I take a cort enema nightly and Canasa in the morning.  I noticed the bleeding has decreased but still have urgency and some pain.  I also take a probiotic and fish oil plus blood pressure meds.

     If any doctor told me I wasn't suffering with this, I would exit his office as fast as I could.

Posted 7/16/2009 1:23 AM (GMT 0)
Have you tried Remicade yet? It didn't look like it. I've been on it for two years now and while it did heal my colon, the UC is stubborn in my rectum and it's looking like surgery for me. So, in answer to your what next, I'd say give Remicade a try if you're open to it, otherwise look into j-pouch surgery.
Meesh
Posted 7/16/2009 1:54 AM (GMT 0)
fyi...

The minimum time to respond to the drug (Azathioprine) is about three months and can be as long as 12 months. These drugs are effective in maintaining remission in 60 - 80% of patients.

Posted 7/16/2009 2:28 AM (GMT 0)
Well as a patient that has had both UP and left sided Uc, I can honestly say that what your doctor says is totally WRONG! I was in agony when it was UP. Left sided hurts as well but at least it is somewhat tolerable. At one time when I had UP, I bled so severely that it made me anemic and I almost had to get transfusions (I was able to scrape by with iron supplements since I didn't have insurance at that time).

But yes, by all means have some documentation as to what you really are going thru. Even though it may mean nothing to him, it may make him a bit more less.....ignorant??
Posted 7/16/2009 4:12 PM (GMT 0)

Thankyou for your replies - I'm glad its not just me thinking my GI is being completely ridiculous! He's just kind of left me feeling like I shouldn't feel ill with this and that I'm making a big deal out of nothing!

dherme - thanks, I did realise Azathioprine usually takes at least 3 months to kick in but the IBD nurse did tell me that my white blood cell count should have begun to drop by now and its remained the same. However regardless of this I don't know how much longer I can handle its side effects.

Meesh - I haven't looked into Remicade, they've not even mentioned it yet, I'm going to ask about that and surgery on Mon. He did mention it to me when I was in hospital at the beginning of the year, he said it was a last resort, rarely done and that they only do it when the disease is really getting in the way of your life etc..(which he doesn't seem to realise mine is) and so I don't think he'll agree to it and will probably tell me that I'm blowing it out of proportion or something...argh! But we'll see...!

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