Hello, as I write this, I’m sitting in a hospital bed, getting IV steroids. Fortunately, even though I’ve had this lovely disease for almost 14yrs, it’s been pretty manageable until recently. I was 8-mo’s pregnant with my daughter when I was diagnosed.
My Colitis Experience and Questions:
Need help with the following:
After many colonoscopies and sigmoidoscopies (2 within the last 5 months) the disease that was once contained to mostly the rectum, has moved up to around 40cm.
1) is that substantial?
I saw a colorectal surgeon 3 weeks ago and he said I have continuous scarring, used the word stricture, said I should have “surveillance” colonoscopies and/or sigmoidoscopies regularly to catch potential cancer.
however, after speaking to my GI today,he didn’t have the same sense of urgency or “doom”. He said we should continue to do steroids (never had to do IV steroids before)
2) Will the inflammation go down? I know “scarring” is scarring, by nature won’t give, so I’m wondering if I’ll ever have normal bm’s again? I have had pencil thin. (if not smaller) for many months. Thank God they’re not hard, or I’d be in worse pain. Already sooooo painful.
3) it seems like the Colorectal surgeon and my GI are not in sync, who should I follow? I really like both, they’ve been really informative and helpful, but obviously have different thoughts.
4) lastly, does anyone else experience rectal pressure? Like your butt is actually going to fall to the ground after having 3000 bm’s in one day. I swear, it’s worse than childbirth! It stops after several hours and many hot Sitz baths, but I have to be horizontal until the pain and pressure subsides.
My ultimate goal is to stop pooping 3000 x a day. To not have accidents at work. To be able to eat at work, without fear of cramping and having an accident. Overall, to get well enough enough to start Zumba again! I miss it, but have not worked out in 2 mo’s due to the aforementioned issues.
Need the wisdom and experience from all of you who are kind enough to respond/share.
asacol, colozal, levsin, lomitril, immodium, also colocort enemas nightly. Just started IV steroids, potentially going to start 6mp
written by UC Mama
submitted in the Colitis Venting Area