In remission but still feel like I'm walking on eggshells...

Hello all:

I've been in remission since April but I feel like I'm walking on eggshells just waiting to flare again.  I was doing well before just seizing everyday that I felt good.  But now that is getting harder to do, I don't like constantly not knowing when things are going to get bad.

I realize that I should not be feeling this way but I do so I thought I'd see what you guys do to deal with it.

I don't feel exactly like I did before UC so I think that everytime a BM isn't perfect or if a have a little twinge of pain that things are going bad.

Yikes, this really isn't like me at all to be quite so worried about nothing.  I'm always the first to say 'don't worry about things that haven't happened.' 

Does anyone else feel this way and what do you do about it?

Thanks!! :)

Hi Amy,
I totally understand how you feel. I am nervous every time I walk into the bathroom (which I'm sure is not helpful) I do tend to worry in the first place so this is not a good fit w/ UC. I'm interested in hearing others suggestions on how they deal w/ it. BTW, are you still skipping every 3rd night w/ the Rowasa or have you tapered further? I am so afraid of getting off of these enemas.
B

hateuc...yes, I'm still skipping every 3rd night, I'm actually thinking of not tapering further until after the vacation in October.  I tapered too quickly before and started to flare again so that's why I'm being so cautious.

Does anyone else think this is a good tapering idea?  To wait til after October if things are still going well?

I appreciate anyone's thoughts.  Thanks.

My daughter (21) and myself (47) both have UC. We are both in remission and on remicade. When ever I get gas, or the runs, or when she gets pains..we both say oh no.a flare up..it's always in the back of our minds. The only answer to this is try to stay in the moment..or the present time. I know it sounds like a flaky answer..but the truth is you don't know if or when you're going to have another flare up. So, why worry about it? It's not easy to stay in the present moment..you need to practice it...remind yourself. Until the next time you feel a pain...don't automatically assume it UC, ...try and be calm. I know some people take anti aniexty meds to help with these worries...as a last resort. Good luck .

I am exactly the same way. I think everything is a sign of a flare.

I wouldn't taper until after my visitors come to town. I am way too nervous that things won't work out... They usually don't for me so I have learned to err on the side of caution. I am sure you have nothign to worry about, you could be in remission for years!

Levi, what you said is part of it...when you are flaring you have no where to go but up...when you are in remission it can only get worse...exactly!!

Kim, I know, I know, why worry about it?  And I'm usually this way but here lately (and I really think it's b/c of the events coming up) I've been worried about it.

Heidi, how long have you been on the enemas?  The first time I did them every night for 6 weeks then tapered too fast and totally screwed up.  Second time I did them for 8 weeks everynight before starting a taper...that I'm on now.

Sweetie, I'm hoping I'll get more comfortable and confident as times goes on!  I'm hoping I have a nice long remission, it just seems too good to be true!!

Notsosickly, yeah, I'm thinking I'll stick to my current enema schedule until after vacation in October.  They won't hurt anything and why not stick to what's working, right?

Anyone else have any coping mechanisms?

The only advice I can give (from experience) is do anything you can not to worry. Stress, as many UCers know is a contributing factor to flares.
I know this from personal experience as I used to have a job that was incredibly stressful, lots of travel and long hours. My flares started more and more frequently during the time I worked at that company.
My UC became so bad, and the meds stopped working, so I eventually did the surgery thing.
I honestly believe that stress had ALOT to do with how rapidly my UC became worse and ultimately out of control.
Deep breaths...deep breaths.

Calm,
Yeah I agree with everyone, keep using then enemas. I would continue them longer (even after your events) if I were you.

Which leads me to my question....

Quincy or anyone,
Do you think its okay to stay on enemas as a maintenance drug (maybe every 3rd night). I'm currently on nightly enemas but I plan on tapering eventually. My GI said to do 2 more months (nightly) because I told her I didn't feel comfortable taperng yet. I told her that Apriso hasn't done anything for me. She said that enemas are fine to use for maintenace too. She also suggested taking 2 to 3 Apriso pills (what do you think about that?). Haven't had blood for 1 month now and I don't want to take any chances. :)

Thanks,
Missey

Yes, I also have the "walking on eggshells" feeling, to a lesser extent as time goes on. I've decided to embrace it as a good thing. I look at it as keeping on my guard, keeping up the things I believe help keep me in good health and not lapsing into behaviours I feel (rightly or wrongly) contribute to a flare.

Of course it's not good to stress over every little blip too much, but saying to you "don't stress over it" likely won't help! ;) I think as time goes on and you see that a blip or some isolated "scary sign" does not turn into a flare, then you gradually become calmer each time a blip comes along.

Serenity Now - yeah, I'm hoping as time goes on I"ll be more ok with these little blips, I mean people with no IBD have bad stomach days, right?  I try to remember that.

Songlady - I love that way of looking at things!  What a good way to put it!!  Thanks.

Also started therapy. Learning all about how I'm 51 and better grow up. Some of us get sick as we get older. Deal with it and move on!

But I seriously understand your trepidation about flaring again.