Frustrated. Bleeding. Oozing. But still alive.

Hi all,

This week has been particularly hellish for me but I've been in a "flare" for a few months now, although I have a few good days here and there.  Increased bleeding and mucous and gas....I've expelled more gas this week than the Hindenburg.

Extremely frustrated that Rowasa (which I've been on for a month now) not only doesn't seem to be helping, but to be making things worse!!  Of course, the Asacol I've been on since December hasn't done a darn thing either, apparently.

Ugh.  I've changed my diet (gone gluten and dairy free for a while) and THAT seems to make it worse, too.

Got a call into my GI and will hear back tomorrow, hopefully.

Sorry, this is my first post here and all I've done is vent.  Guess I'm looking for some encouragement for this sucky disease.

Hope you all are doing well.

-pluton

Hi there and thanks,

My UC is limited to the descending colon. And yes-- it seems to me that the Rowasa is making things worse. Honestly I haven't been good about using it EVERY night but when I use it consistently, it does appear to stoke the fire. I'm trying to be careful about establishing a cause-effect here but I do think there is a correlation.

Cheers.

Interesting. I will ask my GI about that when I speak with her. Thanks for the tip.

I don't think the Asacol has made things worse. Like I said, I have my ups (some days completely normal bowel behavior) and other days absolute hell (10-12 visits to the bathroom, total blood and mucous...hell in my mind at least, I know a lot of folks here have had a lot worse). I am on 12 Asacol per day (2400mg I think?). Can folks safely take more?

I just ordered VSL 3 and starting that tonight. I found out after I ordered it directly from the manufacturer that my insurance (BC/BS) does in fact help out with VSL...but only the 20 packet DS version. I will get my GI to write a Rx for it next time I see her.

Cheers!

12 asacol would be 4800mg.

Explain what you mean by not every night using the enemas...how many nights in a row do you miss?

you should make a serious commitment to using the enemas nightly for a continuous 3 weeks in a row.
You have improved, and at this point, I wouldn't be convinced you're allergic or sensitive to the enemas.

You could ask your GI to possibly change your enema to another generic...are you on the brand name Rowasa? or the sulfite free one.
or a steroid enema.

Is your UC completely throughout your descending colon or just past the sigmoid?


Your title should read "Frustrated, Oozing, Bleeding...Butt still alive!"..somehow it fits..

welcome to the forum,
q

Thanks Quincy...hahaha.

Yes, sorry. I am taking 12/400mg Asacol daily. Six in the morning and 6 at night.

You've called me on it....I've been less than consistently committed to the enemas. Advice taken.

My colitis is limited to the sigmoid region, not the entire descending portion as far as I know.

What did you eat instead of gluten and diary? Cause those actually could have made you worse.

Update: Doctor called back. Wants me to go in for a sigmoidoscopy next week as well as an abdominal CT scan and bloodwork for metabolism. Kinda concerned about this stuff. Is this SOP or does it indicate she thinks it might be something else?