HealingWell
Search Close Search
☰

Scope today --good new bad news

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/30/2019 3:52 PM (GMT 0)
My scope today was a lot better than last year but still is showing "moderate" inflammation in sigmoid and rectum. I was disappointed at the term "moderate". I knew I wasn't in remission yet, but I thought it would show only mild inflammation. Still it's much better than last year so I believe remi is working. I go for my 2nd increased dosage infusion in ~2 weeks.

Ascending & right side of transverse were normal, left side of transverse and decending had some scarring and pseudo polyps but no visible active disease. Remi just needs to take care of the sigmoid and rectum and I will be happy. Wish I could have waited until the end of the year to get scoped after a couple more infusions so I would know for sure if Remi was going to get me in remission, but at the time I scheduled this I was still having significant symptoms and doc wanted to scope in case he needed to change meds. For now we are continuing remi since the few symptoms I am still having (occasional blood and an extra BM) aren't impacting my life.

Report does mention hemorrhoids so I am thinking that's what all that blood was from a few weeks ago. I forgot to ask about that today.

I'll get biopsy results in about 2 weeks and have a follow-up with my doc in 3 weeks.

(before anyone asks ... mesalamine enemas don't do anything for me. I had been using hydrocortisone enemas but was doing so well that I stopped them last week. Based on these results I guess I will start using them again)
Posted 9/30/2019 4:37 PM (GMT 0)
I was going to ask if you were using rectals. hearing moderate is always a downer, but it sounds like you've seen a lot of improvement, and that your symptoms are manageable for the moment. Maybe after your next dose of remicade things will get even better. Can you, or are you open to, adding another drug like 6mp to the mix? Are you on the max dose of oral mesalamine? Have you tried uceris foam? Might be a good option if you want something less intense than a steroid enema but mesalamine enemas don't work for you.
Posted 9/30/2019 6:04 PM (GMT 0)
I'd wait on the biopsies before drawing any conclusions. After my last scope doc said "there's definitely something going on in here, doesn't look right" and then the biopsies come back as in remission. Yeah we look weird, as long time UC patients, but biopsies clarify things.
Posted 9/30/2019 8:22 PM (GMT 0)
NSSG -- I was on 6MP for about a month when I started remi, but it started making me feel sick so I discontinued it. A few years ago I had tried azathioprine but it caused high LFTs after 2 months. I had started feeling ill on that after about a month but tried to tough it out. This time I didn't wait for the LFTs to go crazy. Haven't ever tried the Uceris foam. Will ask my doc about it.

iPoop -- you gave me some hope that it's not really as bad as "moderate". I can usually tell from the pics, but these pics were very dark for some reason and I can't see much.

Each weeks since the increased remi has been a slow steady improvement in symptoms. Am now down to 3-4x/day (my normal is 2-3x), always formed, a little blood a couple times a week. If not for the worry about the damage from lingering inflammation I would be ok staying like this. But I am very hopeful that by the end of the year (2 more infusions) I will be completely symptom free.
✚ New Topic ✚ Reply