Update after colonoscopy

So I was first diagnosed with ulcerative colitis back in February 2016. Just had my second major flare around August 20 and after a month of blood/mucus/inflammation, went on Canasa suppositories per a zoom call with a nurse bc my first flare 5 1/2 years ago indicated most activity at or near the rectum and I felt this could be the same.
I also set up a colonoscopy for yesterday. After a full 3 weeks of Canasa, I began to have more normal stools to the point where, for the past 9 days or so I'd gone once or not at all all day and no blood or mucus. The stools were formed but soft but not the diameter of a normal, non-flaring stool.

This brings me to yesterday, when I had my colonoscopy from the gastroenterologist. It had been about 8-9 days that I began having only one or no stools per day from normal 8 or so from the beginning of the flare through 3 full weeks of Canasa (9 weeks or so). Below are the findings of the colonoscopy, but in short I am still exhibiting ulcerative colitis above the reach of the suppository, so he gave me a prescription for Prednisone, which I got last night and started this morning to last 4 weeks, tapering from 30 mg the first week to 5 mg the fourth week. What struck me as confusing was recommending HIGH fiber foods, since I thought that was not recommended, or maybe low fiber is good before a flare occurs to keep it from happening, but once it does high fiber helps because the medication will take down the inflammation despite high fiber? Also, he instructed me to get bloodwork done and “fill out the Zeposia order form," but Idk what that is, did not receive one in my packet and the lab didn't know what that referred to either. So I sent him a message on my patient portal to explain it and am awaiting a reply. Anyway, this is my update. I believe the Canasa did work but didn't reach the affected area above its reach, hence the need for prednisone. Also I asked him if I have to have a strict diet and he seemed to think it wouldn't make much difference, which is what some have suggested to me in here (eg. quick). So I guess there's no sense in sacrificing coffee or things you like to eat at least sometimes since it won't help much. Maybe when I'm free and clear I'll add apple cider vinegar and EVO and eat some resistant starches, etc. over time to possibly stave off a flare but won't always avoid foods I like.

Thanks and as always, I appreciate any suggestions/observations or telling me I'm wrong in my current thoughts, as I am new to this because I never had to think much about it before now as my flare was “moderate” but really bad for me.


Colonoscopy findings verbatim (some redundant but this is what it says):

Normal mucosa was noted in the terminal ileum. Multiple cold forceps biopsies were performed for ulcerative colitis surveillance. This was done to screen for dysplasia in flat mucusa. Normal mucosa was noted in the cecum, ascending colon, transverse colon and proximal decending colon. There were no AVMs, diverticula, polyps, masses, evidence of colitis or other abnormalities seen. Retroflexion of the multiple cold forceps biopsies were performed for ulcerative colitis surveillance. This was done to screen for dysplasia in the flat mucosa.

Continuous congestion, friability and granularity were noted in the descending colon starting at 35 cm from anus continuously to rectum. These findings are compatible with colitis and ulcerative colitis. Mutliple cold forceps biopsies were performed for ulcerative colitis surveillance. This was done to screen for dysplasia in flat mucosa.

Our recommendations are as follows:
- High Fiber Diet.
- Fill out Zeposia order form.

Post Edited (dmger14) : 11/5/2021 2:21:23 PM (GMT-6)

Thanks for the reply. No other meds, and he had me stop the Canasa with about 3 or 4 left out of my 30 day supply. I wouldn’t doubt the drug rep influence on Zeposia and am awaiting his response on what to do/where is the form I need to fill out. Seems to me an enema would reach higher than the Canasa & help do the trick like you suggest but I’m no doctor. So for now it’s only prednisone and I’m back to diahrea and went about 3/4 times today with some mucus and blood (due to biopsies?). So it appears without Canasa, I’ve reverted back to worse symptoms for the first time in about the past 10 days or so. I don’t mind as long as the prednisone and possibly Zeposia put me in remission.

It's not unusual for bowels to have to readjust after a colonoscopy. You should return to normal in a few days.

You might want to read up on Zeposia before you start it. It's a very new treatment for UC and you have never even tried a more normal treatment regimen of oral and rectal (enemas) mesalamine. I have found that when it comes to this disease we, as patients, our are own best advocates. Some docs are influenced by pharmaceutical reps. Some don't have much experience with IBD. Some never even mention enemas until asked about them. I'm not saying not to trust docs. It's just that they have to focus on hundreds/thousands of patients. We only have one -- ourselves. Don't be afraid to ask questions and voice your preferences. Do your own research to become knowledgeable about treatment options, risks, benefits.

Unfortunately, this is a disease that we have to live with the rest of our lives so it's really up to each of us to find a path that works best and that allows us to live our best quality of life. And with this disease it can be different for all of us.

Firstly, your doctor undertreated you and didn't cover the area where it could spread.
Solely based in THAT...I would refuse prednisone and the Zeposia. You need to request oral mesalamine and mesalamine 4g enemas.
If in the future...and meaning fair trial future...steroid topicals could be added.

Let us know how it goes.

q

Yes you can stop it no issues. Docs rx 60mg for 5 days and then stop for some inflammation issues.

Do you still have the supps...if so, how many?
q

Stopping pred after just a few days won't cause any harm. And being on pred and mesalamine at the same time is not unusual either. Often a pred taper is used to give time for mesalamine to kick in and take over by the time the taper is over. I have never had pred for UC except when I am in a bad flare where nothing else works to get me out of it. I have used short duration pred tapers for other issues -- knee pain and most recently a bad pinched nerve in my shoulder. Both if those were less than 10 days on pred.

Yes it's safe to stop pred if you only took it for a few days.

A GI who prescribes zeposia as the next step up after suppositories..... sorry I would not trust that. It has literally just been licensed which means that data on the safety profile and effectiveness is limited to clinical trials. Both of those are likely to change with time as "real world" experience builds up. Usually such drugs are used as a "last resort" in patients who have failed to respond to other drugs and are weighing up surgery.

Agree with the others on here who suggest trying oral mesalazines and enemas first.

Your doc appears to be skipping about 5 steps on the medical ladder.
Can you get a second opinion?

Your choice to stay on the pred. But I wouldnt take the zeposia...request the mesalamine oral and the enemas.

q

From your quote of the c-scope report it sounds like you now have left-sided UC = inflammation from descending colon through sigmoid & rectum, anal canal to anus. The best oral mesalamine to treat that is Colazal. (Generic is balsalazide disodium.) Those both come in capsule form. The big question will be whether your insurance covers brandname, or only generic med. It sounds like your gastroenterologist lacks familiarity with UC meds & dosing, a bad sign. No one should be RXing Zeposia for you at this point. (It's a totally new drug, originally intended to treat non-gastrointestinal illness! The lit that has so far been issued about it says it can cause many serious side effects, so it's definitely wrong for you!!!!!) 30 mg. daily Prednisone should relieve your symptoms, but one needs to have a tapering plan for getting off it and on to mesalamine oral & retention enemas. These latter meds are much safer for extended use than steroids. RE diet: in case of multiple bms daily, a low-fiber diet is less irritating. If/when you get down to 2 or fewer bms daily with no bleeding or mucus, you can gradually transition to a more normal diet, but beware of caffeine, carbonated drinks, heavy salt, sugar, & spices, and fried foods. If you're in the U.S. you can look for further UC info on the Website of the CCFA (Crohn's & Colitis Foundation) and the Mayo Clinic Online. *** Good luck and take care; we all have to learn how best to manage our gut problem. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Most people have found that going off all meds is risky and will eventually lead to a flare. Just sayin’!

Mesalamines are safe to take daily and lucky you if they will control your disease! If you get into remission with oral mesalamine, I personally would stay on it long term. Flares are not fun and most peoples’ histories suggest they only get worse as they reoccur over time. You may find you can easily taper to a maintenance schedule or rectals of every 3rd night or stop them completely.

UC does NOT affect anal canal. Should there be inflammation there...it would be CD.
The wording is definitely iffy.
Clarification would be necessary.
q

Rectal inflammation/flaring/spasming/gas bubbling feelings pretty much feel like it involves the anus given close proximity.
Many of us experience hemorrhoids during flaring as well...lots of activity and agonising at times.

I suggest you request a copy of the pathology results.

Any info regarding the mesalamine oral and enemas?

q

All depends on the location of inflammation, and we define constipation differently than the normal folk or medical classificication of who don't have UC.

Your doc under treated you...absolutely. Sucks you've had no contact, and it figures. Simple treatment with full coverage seems to be an annoyance for many GI docs. It that dr your actual GI? I suggest you continue leaving messages and request an appointment via phone to discuss meds.

q