14 Year Colitis Vet with a Bad Flare and In the Hospital with Questions

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.

Colitis Medications:

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

4 thoughts on “14 Year Colitis Vet with a Bad Flare and In the Hospital with Questions”

  1. Dear UC Mama–you will do Zumba again! After my surgery, I ran a half marathon, wrote book, and trVeled! Don’t think about the negative, it will only get you down. I would get a second opinion, but your symptoms sound exactly like mine! I was on steroids for soo g, I got diabetes :( but that has thankfully gone away.

    My rectum also feels line that sometimes (drag!), and I slow way down, get rest and acupuncture when that happens. Sometimeswhen I run long distance it happens.

    They took out my Sigmoid colon, terminal ileum (6 inches), secum — around 2 feet all together. That was 5.5 years ago. Scarring due to strictures cannot be cured. You can eat squishy food but that’s no fun… Surgery is usually a last resort, but in my case it worked! Inflammation causes flares, which cause scarring, so I would (Ahem ;) read my book;), and embark on an anti- inflammation diet and lifestyle. If you go home and get really cranky and throw up, the obstruction is back and get to the hospital. You don’t want to risk a perforation! and hang in there!

    1. Thanks, I’m optimistic when I’m not pooping all the time. I actually went shopping today and didn’t have to run to the restroom 5x. So I think the steroids are helping for now.

    2. Hi .. what is the name of your book?
      I’m still wondering about how complicating inflammation is? I have to study that one .. it’s seems more prevelant in the older adults … It sounds harmless but it is serious ..

      I am really paying attention now to my UC .. hoping to keep it from getting worse ..

  2. Hey again—I was just checking…Glad to hear it. The Prednisone definitely will calm things down.Hang in there—do you think you might get a second opinion? Keep posting! Glad you even went shopping ;) good therapy!

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