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Ulcerative Colitis
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Posted 12/20/2012 8:28 PM (GMT 0)
Ok...as I mentioned in a previous thread, my original diagnosis back in June was Ulcerative Proctitis. A current flare up led to getting a flex sig last Friday that showed... "moderate inflammation was found in the rectum beginning at the dentate and extending in a confluent manner to at least the splenic flexure". So, I don't know if this changes the diagnosis, but the inflammation has spread a good deal. Today I got the Biopsy results from that same exam and am hoping someone can help me make heads or tails of what they mean. "The biopsies exhibit expansion of the lamina propria by plasma cells, lymphocytes, neutrophils and eosiniophils, crypt architectureal distortion, basal plasmacytosis and acute cryptitis/crypt abscesses. No granulomas are observed. In the appropriate clinical setting, the findings are consistent with chronic inflammatory bowel disease."

In another section it says: "Pronounced active chronic colitis. No dysplasia identified. Biopsy results show active colitis."
Posted 12/20/2012 10:07 PM (GMT 0)
Well what it means is that you are not limited to proctitis now.
Posted 12/20/2012 10:15 PM (GMT 0)
Thanks, I was thinking it might mean that. Been trying to get ahold of the doc for clarification and to answer some other questions, but of course nobody got back to me today!
Posted 12/20/2012 10:18 PM (GMT 0)
this is full left-side UC, and I think it is better "moderate" than severe, but the abscesses sound bad. the distortion of crypt architecture is expected.

I think good news that there is no pre-cancer signs.

if you were only using rectal meds before, you will have to add oral.
Posted 12/20/2012 10:52 PM (GMT 0)
UCwhat?

"No dysplasia identified."
Be very thankful for that. :-)
Posted 12/21/2012 1:45 AM (GMT 0)
@ItsAlwaysSomething~~ Thanks for that bit of good news in the midst of all this!

@DBwithUC~~ OK....no pre-cancer signs is good news too! I was diagnosed only 6 months ago and it has spread a lot since then, but I hope that's not a sign of worse things to come. And yes, I was only on Canasa before and GI said I will stop that completely and switch to Oral 5ASA since the inflammation goes so far up now. Right now I am only on Predsnisone 40mg/day, today is my 6th day on it and I really haven't seen much improvement. I DO feel better and go to the bathroom less, but it is still mostly D with a good bit of blood and some pain. The worst is late night/early morning and shortly after waking.
Posted 12/22/2012 8:32 AM (GMT 0)
so you were only put on rectal meds at diagnosis?
That right there is why I always suggest to get on oral 5ASA meds as well.
And....suppositories aren't a viable treatment for ulcerative proctitis in my perspective.

Were you diagnosed oritinally via c-scope or sig-scope?


Just to say that you need a full c-scope...it says at least to the splenic flexure..it doesn't say it ends there.

I think you should get on the oral 5ASA asap and a much better rectal treatment than supps....meaning retention enemas at least when you're tapering at a lower dosage.

q
Posted 12/22/2012 4:09 PM (GMT 0)
@quincy~~ Yes, after my DX I was put on Canasa only, and it worked fast and well. Not so much as a blip until this flare I'm in now. My original diagnosis was full C-scope, for this flare he only did a flex sig. I DO understand that the inflammation could go further, but he didn't suggest getting a full scope. And honestly, scopes seem to aggravate my symptoms even more, so I would prefer not do one for a while, as I'm still not in very good shape in that department! The doc plans on starting Oral 5ASA once I start tapering the Pred, but has no plan for enema...he says for me they aren't necessary and wouldn't be of much help to me at all? I'm no longer on the Canasa either.
Posted 12/22/2012 7:59 PM (GMT 0)
Well, you best do your homework and tons of research so that you can be a participant in your treatment.

Do you have a copy of your original c-scope biopsy results? because I'm very curious as to what that states. Hopefully he took biopsies throughout your entire colon and cecum.

Well, I would assume you're on your way to pancolitis rather than limited left-sided since the "at least to the splenic flexure" means past it.

Why did you wait so long to see your doctor if you had symptoms to this point?


q

Posted 12/22/2012 8:33 PM (GMT 0)
@quincy~ I have been doing my homework in the interest of being my own best advocate. I'm not sure my doc is open to suggestions outside of his treatment plan though, and for this reason I have asked my PCP for a suggestion on who to see if I should choose to seek a second opinion. I do know that many biopsies were taken during my C-scope and flex sig, though I'm not sure I ever received the biopsy results from the scope. I'll have to look through my records and ask for them from the doc if I can't find them here. As for why I waited so long, maybe something got lost in translation, but I did not wait long to see my doc at all. When I very first started having symptoms last spring, I got in to see him as quickly as I could once I realized something might be wrong. And when this most recent flare started, I called him just a few days after I suspected it was more than just tummy troubles from being sick. It did take a couple days of phone tag and finding room to work me into the schedule, but the flex sig happened quite quickly, I think.
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