A blip while in remission?

Hi all,

I finally got into remission in Mid july with the use of rectal meds (canasa 2x) and increasing my asacol hd dose from 2400 to 3200.

Then a couple of weeks ago I tapered down to 1 canasa a day and was slowly working to get back down to 2400 asacol hd a day - I don't why, call me stupid :(

For a few days my "belly sense" has been saying that something is not quite right, although I had only been having 1 or 2 solid BM's a day.  This mornig however, I had one soft BM and then a second one shortly after with bright red blood on the wipe and a few drops in the bowl. 

Are remissions that fragile? Have people on this board noticed that these sort of momentary lapses in remission happen often? 

Thanks all.   

Thanks quincy,

I agree that I was silly to try and go lower than 3200mg.

I started the enemas when I was still on pred. Once I came off I started seeing loose stool in the mornings (more so than usual), and so I tried a couple of days with Canasa INSTEAD of the enemas, and it worked well for me. It could have been that particular generic that I was using did not agree with me.

Not silly...just learning. I tapered off meds a few times with my doc's encouragement to see....nah. didn't work.

You should really be on the enemas rather than the supps. They're not a good treatment option, and with you having pancolitis, the rectum/sigmoid should be fully covered.

Go back to the enemas nightly for at least 2 weeks....if all is good, then do every second night. If all isn't quite good, do another week or more..then start to taper.

You have more to risk and you need to use the most effective med. Suppositories might serve you if you're tapering and you can use them on the between the enema nights, for supporting to use them extra during the day if you need or to use them if you're travelling for short periods of time and don't want to use the enemas..etc.

You've done it, now you need to step up and get with what should hold you better....

q

It takes a while, and even now (22+ years later), I'm recognising some symptoms earlier than before...so the fun (learning) never ends..lol.

Keep us posted, hope you feel better soon.

q

Interesting perspective. it doesn't mask symptoms...that's a statement that many preferred non-med users state.

Medications long-term can cause some permanent issues, but regarding UC symptoms...5ASA is still the best all-round med one can use with positive side effects such as protection in cell changes that can lead to cancer.

I'll take all my "unremarkable" biopsy results over a slow simmering inflammation that many who don't want to be on meds seem to have.

Of course, there's always surgery.

Now..some cannot take 5ASA.

I don't think doctors consider prednisone induced "remission" while still on prednisone.

UC is a chronic disease...it will always flare.

q

I am not anti-med but I don't see any of the drugs as doing anything but managing the symptoms. I believe UC is caused by an imbalance of the gut flora due to any number of reasons. As such, the only true remission is to rebalance the flora, however tentatively. Meds are useful in combination with other approaches that deal with the root cause of the disease. I don't know many people that have managed a long-term "remisson" with drugs alone.

dAn...it's great you're doing better and are using the enemas.

I don't think you needed the supps...the enemas nightly with upping the orals should get you feeling better soon. Which mesalamine enemas are you using..the 4g dosage?
q

Xtra:
Eh, I'd prefer to manage my UC with meds that are working extremely well for me, and allow researchers to figure out the cause of UC in the meantime. If you don't want to call what I have going remission, that's fine with me. I really don't care what it's called. I just care that I feel great and don't worry about the fact that I have UC. Besides, by the clinical definition, my UC is in remission.

I do believe that there is a gut flora component to UC, but I also believe that UC is actually not one disease, but a group of diseases with many separate causes, that all happen to have very similar symptoms. That's why some people have no luck with meds, why some can manage with diet and supplements, and why some manage with fecal transplant, etc.

Since what I'm doing works, and works well, at least for the time being, I think I'd be foolish to quit my meds.

dAetomeN:
Since you had pancolitis, maybe you're just going to have to stay on a higher dose of meds for a while to make sure your inflammation is totally quiet before you begin to taper. Also, if you want to lower your oral dose of mesalamine, maybe think about Apriso. I'm on it, and it's a much lower daily dose of mesalamine than Lialda or Asacol, at the maximum dose. My GI said that Salix claims that since it dissolves more readily, a lower dose is effective for maintaining remission. Or something like that. Who knows...I'm just happy it works for me.

<<I do believe that there is a gut flora component to UC, but I also believe that UC is actually not one disease, but a group of diseases with many separate causes, that all happen to have very similar symptoms.>>

I believe that too but since all the causes lead to the same result -- an unbalanced flora -- the solution for all of them is to rebalance the flora. But, of course, the ways to rebalance it will vary as much as the causes for the imbalance.

<<Since what I'm doing works, and works well, at least for the time being, I think I'd be foolish to quit my meds.>>

Well, that's my point! I think you are only masking the symptoms with medications and are causing more problems long-term. That's why the medications eventually stop working and the disease continues to progress for all but the very lucky few.

I'm not saying to quit your medications but I think it's extremely foolish to rely on them so heavily. My goal has always been to wean myself off the medications as much as possible and maintain remission without them. And, like I said, I'm getting closer to that goal every day.