Rowasa enema

I hate to admit that I am flaring. Almost 3 weeks ago I noticed a little more blood and few more symptoms. Decided to call my GI but due to cancellation was lucky to get an appointment with him.
He said to increase Asacol to 3200gr (from 2400gr) and added Rowasa enema every other day.
It seemed a little better in the beginning but then I thought I am getting a little worse. So I started doing enemas every night. Last 3 days I see that I am definitely worse. More blood, more frequency. I have done 6 already but from what I see don’t think it all working. Would think I at least should not get worse.
Should I give it more time? Is it common to get worse before you get better? How long in your experience it takes to see if it’s working?
I never used enemas before... appreciate your insights!

For me once a flare kicks off, especially as you waited a few weeks to kick up the medication, it could take me 2-3 months before I am back in remission. I never fully know how I eventually get back in remission but one day I am! Next time don't wait. I get it, you want to be in denial, but I do find if I wait it takes even longer to get better. I think it is like an avalanche, at first it is a tiny bit of snow, so you ignore it thinking you can stop it at any time, then all of a sudden it is barreling down on you and it takes everything you have to beat it back. That is my experience(20 years), but I know everyone is different.

Thanks for the reply.
I don’t really know if I am allergic. How to tell?

How long were you on the enemas, what was the schedule before increasing to nightly?
Enemas dont stop a flare in its tracks, its a gradual healing. Give it a few weeks nightly to see if there is improvement ...from there stay nightly for a month or two.
If you are increasingly worse over a week or two, you are probably sensitive to either the mesalamine or preservative.

My flares are extremely mild now....it takes me a week to see some improvement and I stay on the enemas nightly at least a month or more. Then I start the taper process.

q

Thank you John and Quincy!
Last night I didn’t do an enema to see if I am allergic. Today I think I am not really better nor worse. My feeling is I am not allergic to them.
Quincy, I have done total 6 enemas so far. I understand that it is not nearly enough... will take your advice and continue every night, starting tonight.
One thing I noticed I am a little crampy even when I need to pass gas. Is it something to do with enemas?
Thanks for your suggestions

An update:
I have been doing Rowasa enemas nightly for 2 weeks now. Maybe had to skip a night to get more of them. I am not progressively worse but not really better. It seemed for few days like an improvement... oh well, no, it’s the same amount of blood...

How should I interpret it? Is it working? Should I give it more time? It’s so frustrating..
Thanks for your knowledge!

Thank you, Quincy!

Before it all started I was having 3-4 BM with no visible blood. All in the morning. Then I went to Ukraine for 2 weeks (I am originally from there), so I had to eat a little different, as close as I could to what I normally eat, but still... there I noticed some rumbling in the stomach and occasionally few tinges of blood in the stool.
When I got back home I started eating my normal and in a week seemed to be back on track. Although I would still see some tinges of blood it was not that alarming, because I’ve seen it come and go before.
Then I went for SIBO breath test (I asked my dr to send me because my first BM usually looks constipated and subsequent get softer and softer) but it turned out misunderstanding... and I was given test for h pylori, which I didn’t need. Anyway after I drank the prep... when I got home my BM was covered with blood.
Sorry it’s long, but this is how it all started. The whole story.

Right now my first BM is maybe tiny bit of stool but mostly thick bloody mucus. The second usually also just thick bloody mucus. Then I have my usual 3 or 4 BMs that are really stool with some blood or even no blood.
On a good day that would be it. On a bad day I might feel crampy. Usually in the afternoon might feel pressure as to need to pass gas but instead would spit some bloody mucus.

That’s how it goes for now. Sorry for too many details.

I'd be asking my doctor if I saw no improvements after 2 weeks.

If you finish the month of Uceris and are still not seeing significant improvement I'd ask your doc about switching from Rowasa to hydrocortisone enemas (which are usually done for only 2-4 weeks).

Lka58. Your symptoms and flaring sound very similar to my own. I've been in a very similar flare since October 2019 and am just now seeing some improvement (July 2020). It's been a long road and I'm not out of the woods yet but I'll share what it took to get me to my current state and also what didn't work for me.

What I think (eventually) worked:
Took a tapered course of oral prednisone (4 to 6 weeks total, start at 40mg/day and taper down each week) and in parallel did alternating days of mesalamine enemas and suppositories. Prednisone gives nearly immediate relief (within a week or 2) and gives the rectal meds some time to gain traction. I think the enemas work but I don't think they do as good a job at the very end of the rectum as suppositories. Supps are great for the rectum but don't get as far up the sigmoid colon as the enemas. But supps are way easier than enemas for me so alternating these every other evening is just way more sustainable long term and gives the benefits of both. This method, over the course of about 6 to 8 weeks, has gotten me down to 3-4 formed BM's in the mornings with some mucus but no or just trace blood and then no to maybe 1 more BM the rest of the day. Urgency is also greatly reduced. I'm basically close to a functioning adult again. I also take oral Apriso as part of maintenance meds (3 X 0.375mg) daily. When I feel tightness in my gut (left side), I have been taking Alka-Seltzer Gold once or twice a day which has brought me relief. Don't ask me why, it just does. I plan on continuing the rectal meds to glean some additional improvement. When healthy and not flaring, I'm a 1-2 BM/day guy and I'd like to get back to that (but that's my "holy grail" goal).

What I don't think worked:
- Budesonide - Even the extended release stuff. I took this for ~6 weeks and saw no improvement. I just don't think enough of it survives the trip down the digestive tract to be effective where it's needed for me...at the rectum and sigmoid colon.
-Prednisone alone - It calms the flare wonderfully but it's a coin flip for me as to whether or not the symptoms return after the tapered course is finished. That's why I suggested to my GI to do the rectal meds in parallel to the pred and he agreed.
- Oral Apriso alone won't get me out of a flare. I'm staring to wonder if it does anything at all since my issues appear to be mainly in the rectum and sigmoid colon. Side effects are nil to low however and I'm too chicken to drop this med at this point. Probably beneficial to the rest of my digestive tract as a maintenance med.

Hope this helps. As I like to say...you can't spell "F * * k" without "UC"!

Good luck to you and to us all!

Post Edited (Marcus1969) : 7/19/2020 5:18:03 PM (GMT-6)