Worried about Pentasa intolerance

Welcome to the forum.

It's all part of flaring....medication or not.
are you on oral mesalamine?
What dosage of steroid?

The enemas will take weeks to months of nightly use....and it doesn't get rid of the problem...it's a treatment regimen that should be tapered to a maintenance dosage.

You could try half the enema per night for a bit to help with retention.

I suggest you do it while laying down rather than on the toilet....

Keep us updated on how it goes.

q

Welcome to the forum.

As far as the odds go, 5% of us are unable to tolerate the mesalamine medications due to either an allergy/intolerance to the mesalamine or to the sulfite-preservative within the enemas. So, it is technically possible but not likely. The thing you can do is skip the enemas for 48-hours and see if your symptoms get dramatically better. As allergy/intolerance is described as a dramatic worsening of UC symptoms (like going from 1 formed and non-urgent bm a day, to suddenly 8 very urgent and loose bms), and discontinuation produces a dramatic improvement. As these are 90% topical medications, they clear out of our bodies within 24-48 hours and you'd know pretty quickly whether or not that is the actual problem. Worth a quick test if you are worried about it. You can reintroduce afterwards and see if there's any difference.

Yes, one drop of blood can look like A LOT of blood when there's water or enema fluid remaining to dilute it.

Enemas can be difficult to retain when you are badly inflamed in the rectum. You can always ask for steroid foams or steroid suppositries, use those for a few weeks to greatly heal that area. Afterward, go back to you mesalamine enemas.

Lots of things to try and discuss with your doctor. Unfortunately, trial-and-error is needed to see what exactly is going on. There's no easy-button.

Thanks.
I'm currently on 35mg of Prednisone and reducing by 5mg every 7 days. I'm also taking calcium supplements for the Prednisone. The GI said that my UC is too severe for the oral mezavant to do anything and I shouldn't make myself take extra pills for nothing. Also on Inflectra at 5mg/kg, we're waiting for test results to see the dosage and if we need to adjust it. Also waiting for results to see if I can take aza.

Last night I was able to get half of the enema in and held it (comfortably at first) for 3 hours. I guess this amount of liquid was a lot for me as I couldn't fall asleep even if I was tired and the presence of it became more apparent as the time passed. Or maybe it's anxiety??

I guess my symptoms didn't really get any worse. So far one BM when I expel the enema after 3 hours, once when I wake up in the morning, and usually once in the evening. The thing that bugs me and worries me the most is the fact during those BMs my body is pushing stuff out like crazy as if the enema was a laxative. My body pushes out these wet farts until some solids come out, then pauses a bit and repeats it two more times along with cramping. When the intense pushing (with gasping and everything) ends, I still get this urgency kind of feeling that makes my muscles all shaky, and that takes 20 minutes to go away. Also, I'm getting clots too now.

I mean compared to pre-enema use, I go an extra time 3 hours after the enema (acceptable I guess) and again in the evening (not as cool). And involuntarily pass some runny mucus while I pee. It's inconvenient and uncomfortable, but if it will get rid of the symptoms in the long run, I guess I'll keep on using it (sucks that I have to spend more time on the toilet, and in pain, though).

For now I'm still not comfortable with administering the enema without making a mess, but I seem to be doing fine over the toilet.

I think I'll keep on using the enemas as long as I don't see any bad changes. If I does get worse I'll stop for two days to see why.

Maybe I'm just panicking a little seeing that my symptoms seemed worse after using... It would be great to hear what it was like for others when they first started using the enemas!

3 hours is good, it should get easier as you heal. It does sound like you have a bit of health anxiety, and we all do to varying degrees. Sounds like anxiety is a factor, for sure.

To maximize your odds of success: After administering the enema, retire for the night and fall asleep on your left side. A normal, healthy colon can absorb the enema fluid in 20 minutes or less. If you're badly inflamed it might take 40, 60, or more minutes to absorb that liquid and you should stay on your left side during that duration. You can fall asleep on your left side, and you can rest against a body-pillow, or several normal sized pillows to keep yourself in that position.

Sleeping on your back, stomach, or right side will cause the fluid to pool in various areas, like the rectum, which are worse at absorbing fluid. if that fluid sits there in a pool all night, and you toss and turn while you sleep then it might feel uncomfortable, wake you up, and give you urgency to go evacuate it.

Really....no biggie to turn throughout the night, except for discomfort that can quickly pass....unless you have extreme gas.

Once in the sigmoid and somewhat past (reason for left side position), it will have coated the area enough for the med to do its work for the time it's retained....

Not bad for a butt med newbie🤔

q

I'm pretty sure it's still too early to tell if the enema is helping or not. Last night my gut wasn't too happy, which I felt while administering the enema and was confirmed when I passed it after an hour and 20 minutes. But overall I didn't feel any worse than I was yesterday (actually had a ton of heartburn yesterday).

Well, it's a good thing I'm a side sleeper! Though when the flare is really bad, my gut gets super sensitive and sleeping on my left, especially, triggers the need to poop immediately!

I've started focusing on my breathing when it hurts too much/panicking/stressing during my BMs or to help the post-BM still-got-the-urge-to-go feeling to pass and it's working so far!