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Remission (Maybe?)

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Ulcerative Colitis
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Posted 12/14/2012 1:03 AM (GMT 0)
So after my whirlwind introduction to UC in October, a course of pred (also a whirlwind) and all the mesalamine you could want, I might have a remission here.

1-2 or sometimes 0 bathroom trips per day, no blood, no urgency (unless I sit at my desk trying to finish just one. more. thing. and wait too long!), no mucous...but sometimes things are just less than formed. Not total D, but not like it should be. This potentially could be because I'm under CRAZY stress at work with 60 hour weeks and really late nights - just an unhappy, upset tummy because of all the stress.

I'm also having some heartburn randomly and not so much related to eating. Probably also stress. But I've been a week off the prednisone and everything seems stable.

I'm going to finish off this box of mesalamine enemas (I have 3 weeks left) and stay on the Asacol at this dosage, but maybe we've kicked this flare. I'm slowly adding back food that scared me before - I had a tiny bit of salad last weekend and was ok - but will try and stick with the paleo diet - although I"m not sure if I can give up my California Pizza Kitchen pizza! That's one of the few things that I can always eat and feel fine. I'm slightly nervous to try beef again - I haven't had any since right before I was diagnosed with UC. Chicken and fish seem to be ok.

I do wish I could reduce the Asacol dose - that stuff is $385 / month and I hate it. Oh well. Price for not being in a flare, I guess. My husband's exact quote was "We can make some cuts if it makes you not sick." I think he's coming around!

We also re-hired our housekeepers to come weekly, and things are already much better between us after just 2 weeks. He's just not an organized cleaning-type person, so why fight about it? Now if we can just be better about cooking at home...yeah right. I would live on sushi if I could. I have a really awesome sushi place right next to my house with a sushi chef that knows about my UC (we're there pretty darn near every Friday) and knows not to kill me. He even buys the fish himself at the market in the morning, and he just tells me what is freshest or tells me to get the cooked stuff if something I like isn't really in season. He says he loves picky eaters or people with food allergies, because if you impress them they always come back!

Anyway, what do you think guys? Have I kicked this flare?
Posted 12/14/2012 2:33 AM (GMT 0)
It sounds like you are definitely doing great! I wouldn't call it gone gone gone until you are really back to normal. But a lot of us establish a new "normal" after diagnosis and it might take a while to figure that out.

I would advise you to talk with your DR about reducing the oral dosage slowly, down to a maintenance level, and keeping up with your enemas. Not nightly, but maybe twice weekly for a few months to keep any inflammation away.
Posted 12/14/2012 2:47 AM (GMT 0)
"California Pizza Kitchen pizza! That's one of the few things that I can always eat and feel fine."


just curious lemony - what exactly does that mean ?
Posted 12/14/2012 2:54 AM (GMT 0)
Great news. Are you still doing the enemas once per day? You may want to cut back on that and actually take them for a longer period. When it comes time to start reducing Asacol maybe it would be more beneficial to do the 400 mg pills so that you can taper down more slowly than tapering down the 800 mg pills. In any event, don't get cocky and make sure you are always doing some kind of maintanence treatment, forever, for the rest of your life, no matter how many years you feel good. The goal is to never have another flare becuase future flares usually get harder and harder to treat.
Posted 12/14/2012 2:58 AM (GMT 0)
so Gary - what do you consider "some kind of maintanence treatment, forever, for the rest of your life" ?
Posted 12/14/2012 3:15 AM (GMT 0)
That could be anything from meds to diet changes to natural treatments, whatever you notice works best on you. You should continue in some fashion with whatever it was that put you into remission in the first place. Some should just stay on meds forever (hopefully easier ones like Asacol). In her case I would suggest some amount of Asacol forever and also an enema every once in a while forever, even just once per month. It's good to stick with safe things that you already know work. I have seen far too many people come here in a worse flare than they ever had before because they got cocky and quit meds, I guess believing they were cured or under the mistaken impression that if they ever flared again they know what works. Often those future flares do not respond as well and then you have to go for harder and harder core meds and options. I think it's terrific when someone gets in remission but people just have to remember that UC is usually forever. The second you let your guard down it will be back worse than it was before so it is imperitive that even if you have been in remission for 10 or 20 years you had better be doing something to stay there or you will wind up being very sorry.
Posted 12/14/2012 3:22 AM (GMT 0)
ok - thanks
Posted 12/14/2012 5:02 AM (GMT 0)
I've planned on being on the Asacol basically forever.

Soystud - I love California Pizza kitchen, and the pear & gorgonzola pizza that I'm addicted to there is something I can eat no matter how messed up my guts are feeling and it doesn't make me feel worse. That and sushi are my "I feel like crap, what can I eat" go to foods :)

garylouisville - yes, I'm still doing them every night. My GI wanted me to stay on them once a day for a minimum of a week after stopping the prednisone, and I'm supposed to call him tomorrow or Monday for further instructions.

For the Asacol, I have the 400mg pills but just take 6 per day, so that would be easy to cut back on. I won't do anything without my GI's instructions though! He's been great through this whole thing, and even though that pred taper was FAST I hung with him and we got me off relatively quickly, and I didn't have any joint pain or muscle aches or any of the crazy withdrawal symptoms that I was reading about everywhere. I still want to eat everything in sight though! I think that is feeling better and not being scared of food.

I think my flare was relatively minor compared to some of the things I've read here - and even if this forum maybe scared me a little more than I needed to be in the beginning (me: "OMG I am going to get cancer and even if I don't I will have to have my colon out and have an ostomy back and ahhhh," that kind of thing...), it's put the fear of UC into me enough to where I seriously doubt I'm going to get cocky and stop maintaining it.

I can take a few pills every day and throw in an enema twice a week if that's what it takes.
Posted 12/14/2012 5:06 AM (GMT 0)
Oh and here is a really gross thing that I didn't realize until I did the prednisone and got my UC to stop being crazy - that mesalamine enema? It should not come out a dark purple almost black color in the morning!!

The entire time, I thought that because whenever I spilled any it would turn purple, that it was oxidizing and turning purple and that was it. Now it just comes out white in the morning...I'm pretty sure that was blood turning it that color I was seeing.

I'm retroactively completely freaked out. Sorry for the TMI.
Posted 12/14/2012 5:33 AM (GMT 0)
2400mg oral asacol is a good maintenance dosage, especially if you have sigmoid involvement. You can up it if you ever needed to....but it's a safe place to stay. I've done it for just about 24 years...i'll continue forever.
I would say use the 400mg pills if you needed to up. See if you can get the generic, which will be less expensive. But stay at 2400 for various reasons.

I would say another week or two can get you past the nightly enemas. i don't think you're quite ready, but doing awesomely.

then do every second night for a few weeks then to every three nights if all is "normal"...and then to twice a week.

STAY THERE.

To me, your goal should be to never be on prednisone ever again...

The purple/blackish would be a mix of the med, blood and/or not formed stool. It wouldn't oxidise in your body.

q
Posted 12/14/2012 6:30 PM (GMT 0)
Congrats---that is great news that you are doing better. Totally agree though about staying on the Asacol to some extent and enemas 2x/week. Great news--hope it continues!
B
Posted 12/15/2012 1:53 AM (GMT 0)
Agree with staying on Asacol no lower than 2400 mg. a day. Good job recovering!
Posted 12/15/2012 3:38 AM (GMT 0)
That's what I do maintain, balsalazide 3 once a day and two enemas a week, I hope I never have to take more or it gets bad but from what I read here you never know, unpredictable!
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