Salofalk enemas and switching to Pentasa granules

Hi CW...I understand your point and am not disputing it. This is a topical med...not systemic, so it doesn't compare to my logic 🤔
How I explain it is...the 4g wouldn't be in a concentrated dose of limited location but a diluted dose. But my thinking works weird sometimes. If you used a 2g enema but added a 1g suppository, the concentration of medication in the rectum would be increased. There are foam enemas that have a one pump and 2 pump administration...it's to increase the travel of it to location, not the dosage, as how I understand it.
I would consider it a waste considering the cost of each enema. Plus, you're already on oral mesalamine that would treat all those higher areas. The enemas are not needed to travel to a much higher area of the colon when doubling (although it would go only as high as stool in there would allow). My goal would be to keep the enema in the most stubborn area needing to be treated (amount). Plus you need to make sure your RX allows you to use them that often...or the pharmacy will not refill them if it stated only 1x daily (at least that's how it works here)
The twice daily would have the 2g working twice, meaning the area would be covered consistently throughout the day rather than a wider space of time between.

Remember, this is all my logic re the enemas and could be totally incorrect.
As a hairdresser...20 volume plus 30 volume peroxide do not equal 50, it equals 25 volume. Hence my logic re liquid.
q

Thanks 😊 good you didn't have to use more than the normal mls salofalk.

Hard to say re retention. Pentasa is in 100ml bottles, and it also has a 4g.

q

Feeling a bit glum atm still going with lots of urgency and quite a lot of times per day, and "stools" are liquid. I've been on granules for nearly three weeks and enemas for just over one week, only started doubling the enemas yesterday. How long do you think these treatments would usually take to work? Atm I'm thinking I'll wait another couple of weeks if things don't deteriorate, and if I'm not seeing improvements I'll ask about adding in stronger meds. It's not nice having that unpredictability but it is of course typical of having UC isn't it I actually had the bloodwork done for filgotinib but I have quite a phobia of taking tablets ... maybe there's some way I could try it and do it, idk... I shouldn't be too downcast because I know I'm not out of options yet, like although steroids are really bad for your body I haven't taken them for a while so who knows maybe they would induce remission in conjunction with the mesalazines. So yeah I shouldn't feel hopeless or anything like that, just ... gonna wait and see how things go. But yeah how long typically would these treatments take to work, do you think?

EDIT: Azathioprine is available as an oral solution I think, maybe I could ask about getting that and add that in. That's a good idea right? Sorry, I'm kinda using this post to think aloud atm and I haven't slept much at all in the past couple of days so my head's a little all over the place rn XD

Post Edited (~ chicken wings ~) : 2/6/2023 9:39:13 AM (GMT-8)

quincy said...
I suggest you call and ask for a foam steroid enema initially to use during the day and the mesalamine at night. I understand the impatience. That's why I remain on maintenance and increase at first confirmed symptoms of flaring. Are you having cramping, etc...dicyclomine can help with that.
How many times a day are you having bms?

Since you have NO invaders as per stool testing, adding Imodium could be an option...I've not used it, but others do.
You could use fibre supplements to help bulk stool a bit. It can also help even peristalsis because flaring usually has the gut having some hissy fits.

How high is your inflammation?

Of course, adding the AZA is an option as well... it takes time for it to kick in as well.

Hang tough, and vent as much as you need.
q

Aw thank you <3 I really appreciate your response and help very much. Yeah I wasn't really proactive enough dealing with this until recently, but I feel really motivated right now to get on top of it which is good, and I think lessons have been learned from this. In particular I think what's more inconvenient, a few enemas and medicines, or being seriously ill in the worst scenario? The answer is obvious and something for me to remember.

I have been on prednisolone foam before a few years ago, I was on it for quite a long time actually (months, probably longer than is advisable XD), that does sound like it would be a good idea.

As for how many times, I haven't been counting which I probably should, it was definitely above 10, it may have dropped down a tiny bit actually but I'm not sure, maybe I'll start keeping a diary so I can keep track objectively over the weeks rather than just guessing with my memory

I haven't been eating enough fibre, thats a good idea and makes sense my gut has definitely been having some hissy fits for sure XD my inflammation has been pancolitis unfortunately, so right the way round, I assume it's similar rn and I'm pretty sure that's what my last colonoscopy said

I think asking about azathioprine is a no-brainer, I've never been on it before but as I read online it can come as an oral solution and I don't like tablets it just seems obvious to me to try something to add in to the mesalazines seeing as I am flaring, I can always try to come off it once I get into a remission right? I will also pick up the filgotinib tablets and have a go at taking them because like I said I actually had the bloodwork done for this, I have basically a phobia of taking tablets that means even stuff like this that I'd really like to try I can get very anxious about and find myself not taking it, however, I will have a go with it and see how I get on because maybe there's a way I could take it. If not there's still the steroid foams, azathioprine, stuff like that that I have yet to add in and maybe over the weeks the mesalazine will actually come through and start improving symptoms noticeably which would be amazing. I am asking about getting my appointment with doctor moved to be sooner as it was booked for a few months away, so that will be really great if I can talk to him about all this. Sorry for long post, I'm sleep deprived so I'm just typing away lol, but this forum does help so much and discussing things with people like you is really fantastic, I'm really grateful for these amazing resources and thank you for your help

EDIT: I know I haven't tried these forms of mesalazine for a super long time so far, I haven't given up on it or anything, I just want to think about being responsible and not letting it be a situation where the inflammation is out of control for a long time, I'm aware over the weeks there is a chance the mesalazines on its own could potentially improve everything, I just want to be ready for the possibility in case it doesn't. And I can probably always try tapering off some things once I get into a remission I'd imagine, but I don't think I ever want to come off mesalazine oral and rectal now. anyways ya I'm sleep deprived so typing tons XD

Post Edited (~ chicken wings ~) : 2/6/2023 11:09:03 AM (GMT-8)

If tablets are difficult then would biologics be an option? They're usually administered by infusion or self-injection. Azathioprine takes around 3 months to work and may need several dose adjustments to optimise the results. Filgotinib is at least pretty fast-acting.