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Quincy, advise please

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Ulcerative Colitis
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Posted 5/13/2020 6:37 PM (GMT 0)
Need expert advise on rectal meds. I had flexo right before Xmas.

Active inflammation in sigmoid colon, mild/moderate. I was put on 4.8gr Asacol, nightly rowasa Enemas and Oral budesonide for 2 months. All this worked and I was good for 2.5 months. Then per my dr advice tapered rowasa to one every night for a month or so. Then twice a week. Then again per dr decreased Asacol to 3.6gr. In a few days after this noticed just a tiny streak of blood... well, looking back I think made changes too soon... still learning.

I wanted to jump on it quickly, missed maybe 2-3 days upon noticing something wrong, and went back to 4.8 Acacol and rowasa nightly. Anyway I went into a flare.

Dr wanted me just continue this for couple of weeks. But I got worse. Seeing more blood, unwell feelings, loose stools, increased frequency. I called him again and he said to increase Rowasa to 2 a day. He didn’t want to prescribe steroid enema. Said it would be overkill.

I am doing 2 Rowasa a day for 5 days now. Not getting worse but not seeing much of improvement. Would I continue and give it more time? I never used steroids so far except the course of budesonide and really don’t want to start but suffering and very discouraged.
Thanks a lot for reading
Posted 5/14/2020 4:15 AM (GMT 0)
Hi....it took me 3 plus years to get tapering figured out in connection to my symptoms.
Basically one's symptoms determine if it's too quick or not for most of us. I think your doc should have left the oral as was for a time longer... until you were obviously in remission and on maintenance for a while.

How much did you improve before tapering?

What were the symptoms that you noticed when you suspected regression...might it have been before going to 2x weekly?

2x daily enemas is promising since you aren't getting worse. If you're retaining them without any issue, I suggest continuing until all symptoms are seemingly normal.

You still have the option of steroid enemas. Hang tough...my GI's best advice statement was "have patience", which was difficult many times.

q
Posted 5/14/2020 9:18 PM (GMT 0)
Thank you for the reply.
Unfortunately, my symptoms changing and I am not sure I am holding or getting worse. I have D now, which didn’t have before. Yesterday was a bad day. Had cramps all day.
I can retain rowasa at night for the whole night. But the morning one can hold for about an hour.
I am thinking maybe so much mezalamine giving me D. Usually I don’t have that.
Today had no cramps, but same amount of blood and everything.

Don’t know at this point. Waiting to hear from dr.
Thanks again
Liza
Posted 5/15/2020 1:13 AM (GMT 0)
It's possible. But...when you talk with your GI, request a stool sample kit just in case somethong else is going on.

Please let us know the outcome of your call.

q
Posted 5/15/2020 2:11 PM (GMT 0)
not quincy - butt, my advice is to try and be patient - I know it's hard but once your symptoms show up, it takes time to turn things around - just like a big storm, things don't return to normal just because the storm moves on - there are residual effects that can last for days or worse depending on the severity of the storm - things will get better - hang in there smile

I agree on getting testing for any possible bugs -
Posted 5/15/2020 11:47 PM (GMT 0)
Thanks for encouragement! I need it.
Posted 5/16/2020 10:56 PM (GMT 0)
Keep your doctor posted, I'd expect a response within a couple weeks. If not stronger meds like oral steroids.
Posted 5/21/2020 6:52 PM (GMT 0)
Update.

I got to talk to my dr only Tuesday night. I described my symptoms the best I could (
D, cramping, frequency, blood). After doing 2 Rowasa a day for more than a week, I stopped. As I noticed it gives me liquidy evacuation and cramps.
Dr prescribed me hydrocortisone enemas, BUT only because I really insisted. Basically he left it up to me to use them or not, He still thinks I should “stay the course” on mesalamine.
Last 2 days were ok-ish in a way I thought I was holding territory. So yesterday I decided to try again 2xday Rowasa before I resort to steroid.

One hour after administering I had liquid evacuation. From 3pm to 10pm had at least 3 bm of mostly bloody mucus. Horrible! Out of desperation I did steroid enema before bed.
WOW! The difference like day and night. It’s 3pm in Philly now. So will see how the rest of the day goes. But so far 3 bm (my normal), very little blood, no cramping, no D, stools sort of loose, but not too bad. Occasionally some rumbling and unwell feeling in the middle section.

I don’t think I am allergic to Rowasa, as I am using it since January. Is it possible I am intolerant to it in larger dosages? Or accumulated dosage?
Anybody with similar experience, please share...

Sorry it was too long.
Thanks
Liza
Posted 5/22/2020 2:17 AM (GMT 0)
Hi...yay for getting the steroid enemas. It would have been good to request a stool sampling kit... however, if you aren't showing improvment on the steroid after a few weeks you can ask then.

Yes, you definitely could be sensitive to the mesalamine over a certain dosage. Some have had that experience with the oral...but while it's possible you would have improved over a longer period of time on them, best to have switched at this point.

Keep us updated how you're doing.

q
Posted 5/24/2020 4:01 PM (GMT 0)
Thank you, Quincy, for guidance.

I was prescribed hydrocortisone enemas for 2 weeks with no refill.

I have done 4 so far. Definitely see improvement. Less frequency, more formed stools, still some blood and mucus.

Question: what should I do at this point- continue with cortisone enemas or try to introduce Rowasa again? Maybe alternate them?

Also, if I got sensitive to Rowasa does it mean I couldn’t use them later on after some time?

Thanks
Liza
Posted 5/24/2020 4:49 PM (GMT 0)
Hard to say if you will remain sensitive to them or if it was an anomaly. Could be that doubling the enemas pushed you past that point. It's also good trying the steroid between to hopefully calm that reaction as a bonus to calming inflammation.

You do have options, however. If it's the dosage and not mesalamine in general, then you can try Pentasa enemas that come in 1g, 2g, and 4g. There is more volume...100ml compared to 60ml of the Rowasa. But if you can retain the Rowasa, it shouldn't be a problem.

You could make an appointment to talk with your doctor after tomorrow about the steroid enemas, since they're working for you, and ask for another rx for them to be called in. You could try alternating taper of the steroid with the Rowasa. Or...ask for an rx of Pentasa in 2g instead of the Rowasa. Trying one over another allows you to experiment what is best for you.

Options are always good....also they're a discussion/negotiating tool with your doctor.

Keep us updated on how it's going.

q
Posted 5/30/2020 5:49 PM (GMT 0)
Hi... I have done hydrocortisone enemas for a week. Wanted to see how I would do with Rowasa. So I rotated steroid and Rowasa for a night. Had no bad reaction!

All in all I think I improved. Formed stools... pretty much all symptoms gone... except blood and mucus. Still see thick sometimes maroon, sometimes reddish/brownish mucus.
I know I am not patient and healing probably takes more time. I guess just need reassurance.

Should I continue rotating hydrocortisone and Rowasa? Or going back to hydrocortisone only would help with blood and mucus better?

Thanks
Liza
Posted 5/31/2020 5:17 PM (GMT 0)
Improved yes...this can take a while for treatment, and patience is what you will need.

Do you have refills for the steroid enemas? If so, I suggest you stay on them for another week and then alternate using both the steroid and Rowasa for a week or so and see how that goes. You can continue tapering till you're on the Rowasa nightly.
Of course, this is a slower option to help healing at the same time as trying to lessen the assumed reaction to the mesalamine.

It seems your doc will work with you during an experimental medication process.

q
Posted 6/1/2020 5:37 PM (GMT 0)
Thank you, Quincy.
Hanging in there. Will do hydrocortisone enemas as you suggest
Posted 6/2/2020 4:31 AM (GMT 0)
Remember that this type of med regimen can be tweaked if necessary...and having options helps mentally.

Let me know how it's going for you.

q
Posted 7/18/2020 5:23 PM (GMT 0)
Hi! I am back with update and more questions.

So I did hydrocortisone enemas for 2 weeks, then rotated hydrocortisone with Rowasa for 2 more weeks. Then almost 3 weeks Rowasa only nightly. Plus I am taking 4.8 gr Asacol.

I haven’t seen blood or mucus for over a month. Usual frequency (3-4 bm in the morning), stools formed or soft formed. I was thinking to continue this regimen for some more time before reducing something. So I have not changed anything but last 2 days I see some worsening. Stools sort of looser and few strands of reddish mucus. Not really bad but definitely worse. Feels like I am on the border.

Should I just wait or go back to hydrocortisone enemas? If so, rotate them with Rowasa? Or just straight hydrocortisone?

Thanks a lot
Liza
Posted 7/18/2020 5:40 PM (GMT 0)
A while to go yet...but definitely improving.
The strands of bloody mucus...on tp, on stool?
Do you have any bloody mucus if you don't have a bm such as pushing while urinating?

You can try the steroid enemas nightly again, or add them in the day after majority of bms.

Have you changed food intake that could cause looser stool? The bloody mucus...could be hemorrhoid?

Experimenting is good if you have the Ok from the doc regarding access to refills.

q
Posted 7/18/2020 8:47 PM (GMT 0)
Thanks for your reply.
I don’t think it’s the food or hemi. Unfortunately it feels like something starting up.
It all started yesterday. Yesterday and today I ate very lightly but today same as yesterday I had an extra bm at around 4pm. So I would say the frequency is a little up. The last bm was not d, but loose and few small pIcees and brownish mucus.
So tonight I think I do hydrocortisone enema. I have 1 week supply at home and I think 2 more refills.

I am so upset it didn’t hold.
Also forgot to mention, I had bloodwork done 3 weeks ago. All markers, including calpro normal. If it means anything.

How long can one stay on steroid enemas?
Posted 7/19/2020 6:38 PM (GMT 0)
I know of some who had been on steroid enema for many many months and others up to a year.
Could be more Cders than UCers. There are different brands, foam or liquid and dosages, as well as suppositories to add to the mix.

Im wondering if its too high a dosage of mesalamine. You could ask the doc to switch you to Pentasa...try the 2g.

And asacol, what dosage is each pill?

I hear your frustration, but it might be good to try and experiment with dosage of mesalamine.
Definitely do the steroid for at least 2 weeks.

q
Posted 7/19/2020 7:13 PM (GMT 0)
Thank you, Quincy.

Asacol is 800mg a pill. I take 2x3 times a day. Total of 4.8 gr. Dr. actually told me to reduce to 3.2 gr. But I was afraid it was too soon.
Now after your post I am puzzled that maybe it’s too much...

You mean 2 gr. Pentasa... this oral or rectal?
Does it make sense to reduce oral Asacol now?
Liza
Posted 7/21/2020 1:55 PM (GMT 0)
Pentasa rectal comes in enemas...1g, 2g, 4g; suppositories... 1g.

When were you put on the asacol and was it started at 4800mg? You could step back one pill of 800mg and see if some symptoms improve...
What is the schedule of dosage daily?

I would do the steroid enemas for a bit and go from there.

q
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