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Ulcerative Colitis
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Posted 7/3/2018 11:45 AM (GMT 0)
So I received my letter from the GI today explaining the scope results

My results are still consistent with colitis. Hurrah... it’s not cancer or Crohns!

I’ve been prescribed suffalk granules as well as my suppositories.

No granulomata seen and TI was clear of anything. Basically called it in keeping patchy (pan) colitis. Which appears to be settled mainly, but slightly active distally.

They will see me in clinic soon 👌🏻👍🏻

Happy with this news!

I think once I start the oral meds it may just take me down another level. The suppositories havin been doing as they should. Just need to cover the top end now. Think I’ll ask about enemas as well. Could maybe do those at night, supps and oral in the day. Then hopefully take it from there.
Posted 7/3/2018 12:28 PM (GMT 0)
Glad you got some answers and are happy. Slightly-active-distally, means left-side, mild inflammation which is just the sort of thing that enemas treat. So, yes, do insist on a prescription for a 4.0 gram, nightly salofalk/pentasa/rowasa/mesalamine retention-enemas. Sounds like you have a good plan moving forward.
Posted 7/3/2018 3:19 PM (GMT 0)
She didn't sat UC either....but seeing the doc will clarify things further. You really aren't on enough dosage of mesalamine. Absolutely insist on the enemas.

What dosage is the salofalk granules daily?

q
Posted 7/3/2018 3:19 PM (GMT 0)
I’m happy to hear you got good news !!
Posted 7/3/2018 5:02 PM (GMT 0)
1.5mg I think.

Not sure on the full doses until I pick them up. If it isn’t UC and it isn’t Crohns. What else could it be? It has to be one of them. I think she must mean I’m still most likely to have UC because as it stands as I don’t present with the usual obvious Crohnie stuff?

She said I have features that are in keeping with ulcerative pancolitis.

Post Edited (kloz31) : 7/3/2018 11:10:23 AM (GMT-6)

Posted 7/3/2018 5:15 PM (GMT 0)
Salofalk Granules are taken as either 1.5-grams or 3.0-grams per day. More info on them:
www.mydr.com.au/medicines/cmis/salofalk-granules

In the end, Crohn's and UC are treated with very similar medications, so it doesn't make a whole lot of difference except when you're talking about colectomy surgeries. There's UC, there's Crohn's and a few shades of ambiguity/uncertainty in between: Crohn's-Colitis and Indeterminite-Colitis to name the more common ones.

Unless you had any clear-cut Crohn's features: cobblestoning, granulomas, deep tissue inflammation (UC is shallow), aphthous ulcers, or Ileum involvement then I wouldn't use the "C" word.
Posted 7/3/2018 5:24 PM (GMT 0)
Thanks for that info!

Yeah I guess I could be in the some where in between zone. But for now she’s happy to commit to a UC diagnoses.
I know in theory it may get treated the same. But when I got told I thought at least as an end game I may have a chance of getting rid should I ever need to... which I absolutely would! Give me the bag and more quality time with my kids any day thank you!

So when Crohns got thrown around. It dampened my spirits. Now I’m just going to try and move forward as positively as possible and take all the meds. What will be will be anyway. But for now... colon removal is still a choice for the future!
Posted 7/3/2018 6:36 PM (GMT 0)
Do you have a copy of the actual biopsies pathology? Not the abridged version?

You used the term colitis...it doesn't obviously mean UC.

q
Posted 7/3/2018 6:48 PM (GMT 0)
I think that’s just the short version they’re using. She also used ulcerative colitis in the the letter as well. How do I get my biopsie results? I just got a letter that my GP will also get. Maybe when I have my actual follow up with her I can grab a copy?
Posted 7/3/2018 6:52 PM (GMT 0)
I'd contact your gasteroenteroligist office (call/email) and ask for a copy of your colonoscopy report and also a copy of your biopsy reports. They might be able to email, snail-mail, or allow you to pickup a copy of those reports at their office (whatever works for you). You can copy/paste the info here (minus any personally-identifiables) and we can help you translate what it means.

Most likely it is a UC, with some patchy appearance maybe even from the prep-itself. Knowing more is always better, it's your diagnosis and understanding it is paramount!
Posted 7/3/2018 8:24 PM (GMT 0)
ok i’ll try and do that, i of course want to fully understand my diagnosis. They don’t seem that forthcoming in sharing. I don’t think they’re with holding them, but acting more like “ do you need them” … i will call tomorrow.
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