Do you taper canasa enemas?

Hi Katie -
What orals are you on?

There are some folks here who can answer better than I. But my take on it is that the ASA-based rectal meds are so safe that there is no medical hurry to get off them. (If folks hurry to get off them, I think it's usually more because of convenience or cost.)
The taper idea is that some people find that what keeps them out of a flare is to continue them indefinitely say, twice a week or whatever - and to find that helpful balance, the way to do it is to taper and see what happens.

I hope this helps?

Thanks you guys !

I am so sorry for my late response on this. I checked to have them go to my email so I could see and respond , but they didn't.

I am taking 2x500 mg oral melamine twice a day and a 4.8 gram rectal enema at night (a total of 28 nights ) with 10 nights left. After doing more research I now realize that unlike steroids, the mesalamine isn't physically addictive---so can be stopped on a dime.

I won't be doing that though. I am VERY nervous about symptoms coming back. I am going to complete the enemas. Then I have another month refill on my orals after the one I'm on now. I plan on tapering those by dropping one pill per week.....

Old Mike posted a U of M study on how mesalamine works. It was FASCINTATING. I have always suspected my UC has an underlying dysbiosis as a cause. I had a bout of what I thought was food poisoning a month before I was diagnosed in 2008 by way of colonoscopy.

It was UP at the time and he said "mild". I used a month of rectal meds and it went into remission for 8 years......I ate whatever I wanted during that time.

I assumed I'd been misdiagnosed and went on with my life never thinking about it again until it came back. After researching a ton I now realize how serious this disease can be. My aunt has Crohn's and until a few months ago---I had no idea the depth of her misery. She just got out of the hospital yesterday (again).

UC was again verified by a second colonoscopy 4 months ago with a little bit more activity, higher up than rectum, but still "mild" he said. So, I just have to accept what they say. It really upsets me that we can't get to the WHY though --life would be so much more understandable for us.

I cut all sugar, processed foods, most breads, all seeds and nuts (for now) I don't drink, no illicit drugs (other than a puff of MJ as it's legal here) and with these meds I am currently doing FAB !

Formed stools 3 times per day (the first a zebra with the enema in it)---4 DAYS NO BLOOD, NO MUCUS (not even those weird tiny mucus balls). I am over the moon and praying hard......

Thanks you guys. This is such a great forum. I lurk and read a lot and feel like I know many of you

EDIT: adding that I have been taking digestive enzymes with each meal, probiotics, kefir, glutamine, zinc, collagen, fish oil, vitamin D, calcium, B-12, folate, and Kelp......I think all of these things have been helpful as an amalgam.

Post Edited (Katie222) : 4/5/2017 9:26:46 AM (GMT-6)

No, no, no don't stop the mesalamine enemas on a dime. And stay on the 2000mg oral. When you flare again... it can be increased. There are too many benefits to being on it rather than not and then starting it again.

Taper to every second night for about 3 weeks or longer depending on symptoms and how bad your flare was and how bad the inflammation, etc. Then every 3 nights, and consider a maintenance of twice a week.

Point to take to heart.....one can taper quickly, slowly, drop meds, etc. The butt rules the game, so take out the what you want to do and pay very close attention to the symptoms. You will never force meds to work and its easy to reach the conclusion that they don't work if use them improperly. Let them do the job.

Experience, unfortunately the subjective teacher.

q

A typical flare dose is 4,800 milligrams a day of oral mesalamine. Your is waay too low. Ask your doctor about it.

Not everyone can taper the enemas, and yes you should taper them down. Enemas can be used infinitely.

And one small correction, steroids aren't addictive like opiods are. Steroid-dependency is a misnomer, it really means your dosage of steroids cannot be lowered without you flaring again. That has nothing at all to do with a physical addiction. Rsther it means your other medications aren't sufficient without the pred.

Katie...what is the location extend of yiur UC? Maybe you can incease it to 2500mg, and climb up as per GI instruction when flaring.

q

Katie222 said...
Hi soynomore, well the bottle says 500mg per pill and says to take two of them twice per day----it's called Pentasa, does that make a difference? my GI wants to see me before he prescribes anything more after these current meds.

sorry, didn't realize that's how pentasa was dosed - i was always an asacol man -

My feelings are that since I was in remission for 8 years after the first bout, that my experience may be the same this time, too......am I crazy naive?

maybe but in terms of UC, no - as far as the next flare being the same as the last ? imo, some things will be the same, but other aspects may be much different - it's too hard to say either way - just let go of any expectations you have, and treat things as they happen - and be vigilant as far as being conscious of the things that are going on without getting too crazy focused - a tough line not to cross at times -

Katie222 said...
I was kind of hoping that I could be off all meds for good. Do you think I'm dreaming

I'll share what my GI told me about mesalamine when I was first diagnosed -- He said I'd be on it for life and he wanted to warn me that if I ever decided I was stable and wanted to stop taking it, to do so with the risk of knowing that once mesalamine is stopped, there is no guarantee that it will work the next time if you ever need to re-start it. (Say you stop it and two years later flare again and re-start mesalamine then? It might not work at all to control the disease). I assume he knows what he's talking about and there are studies on this?

Yeah, after my initial diagnosis and treatment my GI said if it comes back I'd most likely be on lifetime meds. I shooed the idea, of course. But I am really on the fence because there was so much time between flares (8 years) and I used no meds in the interim and din't change my diet at all.....I hate it when I feel 50/50 on something like this. But yesterday I was 100/0 for quitting ASAP.

Yeah, I am really glad my GI chose these meds, too. From what I understand many won't prescribe the rectal mesalamine enemas. Today is day 5 symptom free with formed stools. The only med being mesalamine (oral & rectal both).

I should say I am also eating mindfully, using pro&prebiotics , digestive enzymes, collagen, zinc, glutamine, fish oil, vit d, calcium, lots of bananas and other soft foods......and steering clear of the toxic regulars in my life ;-)

I wish you continues success, Quincy !

RaleighUC01 said...
I agree the cost is kind of crazy.. like $90 a box after insurance... hoping that a generic can come out soon that can cut that price way down. It would make my selection that much eaiser.

Raleigh, the mesalamine enemas I have are generic. They are by Perrigo and say "Rectal Suspension Enema" they are 60ml (4grams) each and come in a box of 28. With insurance they cost $5.00 co-pay is all....I wonder if you could get these?

Thanks, songlady
I am going to see my doc before new meds are prescribed and when I do, I am going to ask him to see my biopsy reports and also ask for a conclusive diagnosis (more than just the vague UC/UP one). I really want to know specifics about where in my colon the diseased areas are.

Side note, I bought the saccharomyces boulardii and used it when I first got my flare. Now using a 10 strain bifida/acidophilis mix. Do you prefer the SB?