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Is enemas enough of a maintenance?

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Ulcerative Colitis
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Posted 3/17/2017 3:17 PM (GMT 0)
Ok, this may be too broad to generalize , but I'm just wondering for if I do eventually get out of this flare (xD) ...

Once you have been well for a little while, would enemas be enough of a maintenance? Or would you generally have to have oral as well?

I've had it for a few years where I'm only on oral (no enemas), so I'm just wondering if it can work just as well with only having enemas. And whether it depends on how far the disease extends or not.
Posted 3/17/2017 3:59 PM (GMT 0)
you're absolutely right, there's no way for anyone to predict the future, especially when it comes to predicting the course of UC in someone else -

hopefully enemas will be enough for you tho - that would be awesome -
Posted 3/17/2017 4:38 PM (GMT 0)
there is always some prediction uncertainty ... but

if the disease is UP and has been stable in that area without creeping upwards for a few years, then for some time enemas would very likely be enough.

the oral meds are in this case an insurance against spreading. you might do just as well (insurance wise) with a diet high in anti-inflammatory foods, and excluding any foods that seem to unsettle you or your gut microbes. also take some probiotics.

as long as you tolerate mesalamines, I would take 1g daily along with the probiotics ... but this would be more caution on my part than proven need.
Posted 3/17/2017 5:04 PM (GMT 0)
What oral have you been using? And what dosage?
I wouldn't risk it......I've been at this too long and firm in my perspective of oral and rectal.

q
Posted 3/17/2017 5:09 PM (GMT 0)
Ok...i see you're trying the sulfasalazine syrup.....what are all the ones you've tried?

q
Posted 3/17/2017 6:06 PM (GMT 0)

quincy said...
Ok...i see you're trying the sulfasalazine syrup.....what are all the ones you've tried?

q

I'm certainly not ready to be tapering anything yet, I just wondered more generally ... but in my specific situation I have just started a low maintenance dose of the sulfasalazine syrup to see if that helps somewhat (my flare is not under control yet)...before that I wasn't on any oral due to tablet taking issues I am experiencing atm, so just rectal and IV. As for what I've tried in the past when I was happily knocking down the pills, the great miracle for me was Pentasa, which worked exceptionally well, unfortunately though I ended up not adhering to taking it due to a mixture of arrogance (thinking I didn't need it ... OOPS) and the tablet phobia stuff. The thing is, I am quite excited about this sulfasalazine because even on the low dose I'm on (not sure I feel comfortable upping it yet, either) it might just provide that extra bit of relief I need, as the enemas alone are not solving the inflammation problem, nor is Remicade. Although Remicade's a much stronger drug and all that, maybe I just don't respond very well to it so maybe this new oral stuff might help. idk...

But the real thing I was wondering was just, would there be a chance, say I get into remission for a while, after a few weeks, a month or something maybe if I tapered off the oral and just stayed on enemas, since, bizarrely as it is, I don't really enjoy taking the oral very much. But so long as I don't become more anxious than I currently am, I can knock down the syrup at least smile
Posted 3/17/2017 10:04 PM (GMT 0)
Gonna be different for everyone, no one person seems to respond exactly the same. An RN at the hospital where my wife works told her yesterday that she had UC and was hospitalized for 2 weeks cause it got so bad. It went away finally and for the last 4 years she has been normal and takes nothing for it, no maintenance meds or anything. Will it flare back up for her eventually, no one knows? Maybe it will come back next month or maybe it will stay gone for another 20 years. I've read hundreds and hundreds of peoples stories and seems some people have it return pretty frequently and then you read others who have been symptom free for 10, 15, or more years. I only hope more research in the future finds a better cure for this disease or isolates the trigger in the genes.
Posted 3/17/2017 11:08 PM (GMT 0)
All you can do is try. Appropriate advice would be don't risk it.

q
Posted 3/17/2017 11:23 PM (GMT 0)

Phattwoohie said...
Gonna be different for everyone, no one person seems to respond exactly the same. An RN at the hospital where my wife works told her yesterday that she had UC and was hospitalized for 2 weeks cause it got so bad. It went away finally and for the last 4 years she has been normal and takes nothing for it, no maintenance meds or anything. Will it flare back up for her eventually, no one knows? Maybe it will come back next month or maybe it will stay gone for another 20 years. I've read hundreds and hundreds of peoples stories and seems some people have it return pretty frequently and then you read others who have been symptom free for 10, 15, or more years. I only hope more research in the future finds a better cure for this disease or isolates the trigger in the genes.

Interesting ... so true, in that so much of it is currently unpredictable and unknown ... I'm sure that the discoveries over the coming decades and beyond will be phenomenal.
Posted 3/18/2017 10:18 AM (GMT 0)
I think it's fairly rare to be only on a rectal-route medication for maintenance unless the patient has ulcerative proctitis (may use only canasa suppositories for maintenance). Those with more extensive UC usually have some flavor of oral med.
Posted 3/18/2017 11:58 AM (GMT 0)

DBwithUC said...
there is always some prediction uncertainty ... but

if the disease is UP and has been stable in that area without creeping upwards for a few years, then for some time enemas would very likely be enough.

the oral meds are in this case an insurance against spreading. you might do just as well (insurance wise) with a diet high in anti-inflammatory foods, and excluding any foods that seem to unsettle you or your gut microbes. also take some probiotics.

as long as you tolerate mesalamines, I would take 1g daily along with the probiotics ... but this would be more caution on my part than proven need.

Ditto above. It's so hard to say with UC. I'm of the belief our body can heal itself through diet and nutrition....I've done it but it's hard to sustain a diet of that magnitude so I still have to use meds as a maintenance (for now anyway until I can stay in remission long enough to feel safe to go off again). But that's me....I'm a risk taker and HATE the big Pharm!
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