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Ulcerative Colitis
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Posted 5/19/2016 8:10 AM (GMT 0)
Hello everyone!

I had my appointment with my GI yesterday - I didn't see the one I saw in hospital, but the head of Gastro, who I have seen before and get on Ok with.. He is happy that the three loading doses of Infliximab have been Ok, and has also started me on Methotrexate 15mg/week, plus folic acid (no little'uns for me just yet!). I'm happy with this - I don't drink anyway so won't miss that, I just hope my hair doesn't fall out too much more (the pred has taken it's toll on it this time!)..

The change is - he isn't happy to confirm my diagnosis as UC, due to the patchy nature of inflammation, and the fistula (both the one I had surgery on and the one seen internally on the MRI), my new official diagnosis is Crohn's.. Not sure how I feel about that - I was getting used to the UC life, I know it's not a massive change, meds will stay the same and treatment plans going forward, it's just a different word, I know that, but it's hard to accept! Are they really sure this time?!

My other worry - do I have to leave here now? Please let me stay!! tongue
Posted 5/19/2016 12:03 PM (GMT 0)
Stick around, there are quite a few folks here with CD! Hope the new meds work well for you.
Posted 5/19/2016 12:34 PM (GMT 0)
Of course you can stay!
Posted 5/19/2016 3:07 PM (GMT 0)
well... Ok fine, since you asked nicely... And we like you...

(Your hair falls out cuz if flaring not meds, tKes about 3 months after the inflammation for hair to fall out)
Are your iron and vitamin d levels ok?
Posted 5/20/2016 6:34 AM (GMT 0)
Hi all! Aw thanks for letting me stay!

Dikid - my iron was low, then Ok (after iron infusions!), they were testing at my last infusion but not heard anything.. No clue about Vitamin D levels, but my hair is thinning a treat! I'm seeing my GP in a couple of weeks, maybe I'll ask for my levels to be tested then..
Posted 5/20/2016 7:29 PM (GMT 0)
Hi Aimz,
Definitely stay! Lots of Crohn's people are still on this board. While the disease is different, the treatments are extremely similiar.
B
Posted 5/20/2016 10:30 PM (GMT 0)
Patchy as in how? Were you using enemas maybe and your rectum was clear but the rest wasn't? Did they take biopsies to confirm? Did they find granuloma?
Posted 5/23/2016 7:41 AM (GMT 0)
Hi Andrina,

I believe patchy as in stretches of diseased colon, then nothing, then disease, deeper than just the mucosal layer, and I also have a(nother) fistula, which has lead to their change in diagnosis.. They took biopsies when I was in hospital, and I'd like to think it pointed in the same direction..!
Posted 5/23/2016 11:42 AM (GMT 0)
Patchy inflammation (skip lesions), fistula, and deep tissue damage are a fairly solid Crohn's indications especially together. So, I'd feel confident in your new diagnosis.

Uc and Crohn's are like sister diseases with us sharing very similar trials and tribulations, medications, and the research often cites both. So, I bet many do read and contribute to both forums (why not? If you can learn and help others). Just don't forget about us here or we'll be really sad *sniffle* :-)

Cheers,
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