For those who have tapered down mesalamine enemas

There is some anxiety here which may be obscuring an objective view. But there does also seem to be some underlying need for maintenance medication medication that may be higher than every other night.

Keep in mid that a good percentage of IBD patients have IBS-like symptoms even after all inflammation has been treated. If this is you, the occasional uptick in loose stool may not have much to do with the taper. Adding more anti-inflammatory back in will not really help symptoms that are not linked to inflammation.

Some symptoms are plausibly due to low sub-clinical levels of inflammation, kept at bay by the rectal anti-inflammatories. This will respond to increasing anti-inflammatory.

You also seem to have the wrong model of the purpose of the taper. There is no addiction-like dependence on the rectal meds. There is no need to taper (as with steroids) so you body has a chance to wake up. There is no physiological adaption to the meds so that more are needed over time. For mesalamines, the sole purpose of the taper is to find the correct maintenance level.

For some the maintenance level is zero, and they maintain with oral mesalamine or with anti-inflammatory foods and supplements. For others it may be every other night. For some maybe every 3rd night. If you think inflammation is returning after a few weeks on every other night, go daily for a short while, and then go down to something that is every other night with the occasional off-night filled in. If you find that for you the maintenance level is not zero nights, then adapt to the level you seem to require.

Because of the IBS-like symptoms, it is hard to tell what is too much reduction versus unrelated (not due to inflammation) symptoms. Try to notice if you have every 3-4 week run of bad days even when at nightly administration. Maybe try some antispasmodic, or low-dose Imodium, for the IBS-like symptoms and see if you can otherwise maintain on every other night, or evenon twice weekly.

But mainly realize the correct model of the taper and why it exists - because it is not the same reasons as steroids; and also realize that not all symptoms are linked to inflammation, so expecting an anti-inflammatory to adress them is a misfit.

good luck

I'd second it being anxiety and normal stool variation. Taking metamucil will make your stool more consistent in firmness.

Early in my UC journey, my doctor suggested I taper off of my enemas. He suggested doing every-other-night, then every two nights, twice weekly, weekly, and then ceasing. Me being totally new to this illness, followed these instructions without really thinking much about it. Much like a failed prednisone taper, my symptoms cascaded as I went to twice weekly with a return of blood and urgency. I called and he said return to nightly, and within a day or two my bowel symptoms were back to normal. I staid at nightly enemas as a maintenance treatment thereafter for a series of years. Doctor said not everyone can taper off of them, do what works for me.

So when talking about a failed enema taper, we're talking the same things as a failed prednisone taper would produce: a jump in urgency, return of blood, and increased number of daily bms. I would try not to read stool firmness as one of those points, as there is just too much variation to make any sense out of it.

Thanks. I think I’m on max oral mesalamine. The problem is that I don’t know if my symptoms come back. As iPoop has explained what to look for and rationally I know this I think the fear I have is clouding my fact based judgement. Definitely messes with your head!

I think from this I will take away that I will go off enemas on 2 nights out of 7 and see how I do.

Like off Wednesday and Sunday.

It's fine to try different tapering methods, but you won't see the value if you're scared to taper beyond that. I would suggest 2 nights on one night off rather than the other. From there you can revert back to the every second night.

q

Good luck, let us know how it goes

Hi everyone,

Just a little update. I freaked myself out on that taper and had my monthly period so went back to nightly enemas. I was stable and so again I am tapering every other night on the salofalk enemas.

I have the same fears of tapering down to a maintenance dose as before but I need to distinguish between my anxieties and actual fact based symptoms of inflammation.

So, I am on day 6 of on one night and off one night.

I will keep you posted. My goal is to hopefully maintain how I am feeling with enemas twice a week but that will be long down the road. Right now I will try to see how every other night works for me for at least 1-2 months.

And as of now and the past long while I have had 1-2 (usually 1) BM each morning. Solid to soft usually. I have some gas in the mornings but I think I can’t chalk that up to food and sometimes the enema.

My fears are keeping me from really seeing if my body will stay ok without the nightly.

I will keep you posted.

Thanks for any comments and ideas and support.

I used to be able to taper mine down to once a week or even less, but the past several years, I have to do them nightly or I flare. I can miss maybe one enema a week and be fine, but if I start missing too often, I very quickly get symptoms again.

Hi there
I have struggled with this too. Since diagnosis (pancolitis, but with ulceration in the rectum only). I've been on 2.4g oral (asacol), and pentasa enemas nightly. Since being medicated, I've also had clear cal pro test results every few months, meaning I should technically be inflammation free (maybe not clinical remission, but close to, I assume).
Despite this, I've continued to have loose stools, stomach discomfort and mucus on and off over the last year. My "tapers" from enemas have also seen an increase in symptoms, so I fluctuate between trying to get off them, and just resigning myself to having them as a part of my regime. I'm currently down to every second night, which seems to keep things at bay.
I've tried dietary changes (low fodmap has been a game changer), and its been established that the IBD has caused me to have IBS as well- the symptoms of which basically mimic the symptoms I had when diagnosed with colitis.
I had a scope last week that showed no visible inflammation at all, despite my symptoms. I have a lot of health anxiety, which it sounds like you suffer from as well. I truely think that diet and being overly attentive to every thing I feel has actually caused me symptoms, not the other way around.
I don't really have answers, except to say that the mind-gut link is massive, and shouldn't be underestimated. Perhaps make those dietary changes you are looking in to, but focus on stress minimisation through meditation, or even counselling. UC is a ****** (excuse the French), and it's a stressful diagnosis even when you aren't prone to anxiety.
Good luck.

Update:

I think I am going on week 3 of tapering enemas to every other night. On the off night I have been doing a salofalk suppository just to stay covered and for my mental state.

I had a recent blip with tragedy for a friend and that caused some nerves and an upset tummy for a couple days.

I’m having a tough time deciding on if I have an uptick in symptoms but I think it’s anxiety.

I’m going 1 time a day in the morning soon after waking. It’s enema consistently meaning softer side but formed. Having enema stripes on the stool.

I’m trying to make sure that’s what it is and not mucous (anxiety talking??). How would I know if it’s mucous ?

I feel gas pains at times but again (inflammation or anxiety).

No increase in urgency, no blood, no increase in frequency except that one day when I had 3 bms after the tragic news we received. And for 2 days after the stool slowly got back to proper consistency.

I am about to get my period (5-6 days away) and that always seems to throw me for a loop. Cramps and gas and softer stool. I will try not to freak out this time and see if this every other night is a good maintenance level for me.

I have a scope in mid July so I think every other night would be good to see what the colon looks like on this level of enemas, right?

Any input would be greatly appreciated.

Thanks John.

Do you have insight on mucous? I’m trying to reassure myself it’s enema and not mucous in the stool.

Ok thanks. I can’t tell. The enema is usually on the stool in lines and such so it’s difficult. I thought it seemed a bit sticky looking(the stool maybe) but not sure.

I know you have said in the past to look for flare symptoms and I guess I’m just looking for something to be worried about. Thanks again.

Crossing my fingers all stays good.

And I guess when you pass gas or in the toilet alone too?