Update, not in remission after all?

I guess I should have waited to see my doc before changing my sig line. I guess I thought if my path report said no active UC seen it meant remission plain and simple.

My doctor said "yes, that's what the biopsy noted, but I saw active disease". She also showed me the pictures . I am pretty bummed because my rectum looks bad with at least 6 visible ulcers. this blows my mind as I have seen no blood since July 21st.

She also wants me to step up my Pentasa to 4 times per day instead of 2 (2 pills per dose). Also stay with the enemas until they are gone and maybe not use them anymore.

I guess this is a little disturbing due to how everyone here feels so convinced they are what helps most, and also since it was my rectum that was still so inflamed. The other parts of my colon were great (3 cm of sigmoid had inflammation).

I may ask her when these are gone to please write an RX for more of them......I was just too flustered to ask at the appt and I always lose all my courage. When I go there I small brave and have a list of questions.....then fade out and only ask a few.

I DID ask about why the prometheus test was necessary though----since she had intended to do a small bowel biopsy. She said this test helps her see "the course of the disease". As it turned out she said she couldn't get into the small bowel. She said "sometimes you can and other times you can't. You have to force your way in it"......is that strange?

She felt really bad that I receieved a bill for $2900 and said that they might work with me to lower it to a more affordable amount. I sure hope so !!!

I am still positive......at least I have clinical remission and am not seeing blood and mucus every day. I am just going to keep doing what I am doing and assume things will keep on clearing up.

Thanks iPoop......that 99/100 comment really helped boost my mood

DBwithUC said...
active ulcers are bad news.

there is a valve between small and large intestine. YOu can't get scope into small. My GI says you can sometime kind of flip the camera tip up and through the valve.

Ok, that is exactly what my doctor said. Sometimes you can and other times it's too tight a junction. I had no idea about the anatomy and I suppose this makes sense.....there would be some sort of sphincter there (to stop contents from flowing freely)?

They were definitely visible ulcers and that is why I was bummed. I have had some pretty intense rectal pain since the scope also. No M or B, but I can feel a slow burn. I am being super careful and recommitting to my diet and "extras".

@quincy,
LOL, I cannot seem to stop with those accidental puns (I keep saying 'hindsight', too).

These were pretty big ulcers. When I zoom in on the inflammation, I can also see lots of smaller red dots, too. I am not sure if she took biopsies of those or not, I will begin making a new "ask" list. She is so nice when I ask questions !

My original GI seemed really impatient with me when I asked questions and seemed sort of disgusted that I wrote everything down. When he couldn't answer my questions, he'd act like they were insignificant or silly. And do sort of an eye-rollish deal....

My new GI said she was very happy to see me writing things down AND asking for copies of my reports. She's a keeper, I think ;-)

She had originally suggested stopping the enemas NOW and just increasing the Pentasa, but I have several weeks left and said I'd prefer to finish them. I asked her if I decided to keep on using them if I could just call her office.....she said yes. I do believe I'll be calling.

I have a month worth of the steroid here already (they were ordered by mistake last time). Based on the looks of my rectum----do you think I should switch to those for a few weeks? I mean, I won't have any idea if things changed....

Thanks. I was hoping you'd have some thoughts

They are actually teeny tiny ulcerations that look kike sandpaper...think a scrape,or road rash, and tissue in that state will easily bleed. Not all of us have that level of inflammation all of the time.
MK is talking about separate ulcers...specific and or included in the inflamed areas or the areas around them have healed.

An ulcer....unless you have an ulcer.....it would be clearer to use inflammation and friable, because Uc usually is not described as an ulcer nor defined as an ulcer.

I'm not making myself clear I suspect, but the description does not fit the actuality of the disease in general.

MK....so the question is....is the are area around the ulcers specific in how they look, or does the area in general have an angry inflamed look and the ulcers specific.
q

We definitely learn as we go. We gain more confusion and eventual understanding as the files are sorted and put into their respective places.

Aha moments.....sometimes suck.

q

There's a reason the UC forum has the most posts and is the most active forum on healingwell, as UC is a difficult and unpredictable condition that keeps us guessing! Lucky us ugh