Question for those in remission?!!

[kadi]

When you got better, did you have a period of half-health?

That's what this feels like, I'm not really sick, but am so out of shape, overweight, & the balance is so delicate (can't get too tired, eat the wrong thing, get stressed, etc or I flare) that I never really feel totally well, even though most days my IC symptoms are fairly mild.

What got you back to feeling healthy again?

[jaime15]

Kadi,
Your symptoms (or lack thereof) can be considered a remission. Many patients who have alot of symptoms with their IC can begin to have less and consider it as close as can be to a remission.
Example: If you potty 40 to 50 times a day.......and go down to 20.....in this time you've got your symptoms under control. It's not what a normal person pee's, but great for most of us! :)

The closest I've had to a remission was after I had my son. My symptoms were still there but next to none and very tolerable. So much so that I didn't take elmiron or any meds during that time. It last for 4 months. Now I can go every few weeks or so. And I walked for exercise.

About your weight being a factor. Of course you are going to feel sluggish when you FEEL unhealthy. You're battling extra body fat you didn't have before. (I'm right there with you!) It's understandable to want to work out lightly or not at all for fear of making a flare come on. So take it slow.......but do find something that works for you and your lifestyle.

Maybe more patients will lend a story or two for you....hugs..... :grouphug:

[ICNDonna]

I don't usually think of myself as being in remission --- what I do is to just be thankful when I feel good --- and I have learned not to worry about what my bladder will feel like tomorrow. Right now I'm in a flare, but I know it's stress related and that it will go away with the stress.

When I feel good, I do low impact exercise, which is mostly walking. I do need to get back to regular walking, but it's really hard when the weather is rotten. Right now I have a severe case of wanting spring to come!

Warm hugs,
Donna

[vm]

I don't really think of myself in remission either b/c I do still flare sometimes or may get a little twingey feeling now and then. My frequency is still higher than normal, but doesn't interfere with my activities.

But I know that when I first started feeling better it was really off and on and I often just had a bit of discomfort so that it wasn't totally gone - but felt a heck of a lot better? I really got to a place where I didn't particularly want to feel any discomfort, but could live with it if I had to. I was scared to trust that I would feel good - generally afraid of when the bottom would fall out. Even that got better before my symptoms improved to where I had lots of days with no symptoms at all.

After going on Lexapro 2 years ago (?) it really helped take away even the twingey feeling. Then taking the antibiotic after sex REALLY cut down my flares - I think a lot of times I really had infection brewing and didn't know it. Anyway, those were my final pieces.

[mom_in_ma]

Kadi,
I don't ever use the 'R' word because I'm afraid I'll jinx myself!!! Besides, I do have occational little flares when I go overboard on the diet or have too much stress. I just know how to handle them now. (For me it's h2o, antihistamines and xanax!)

That said, yes, I would say that I experienced a period of half-health. Mostly I felt good, but had slight symptoms and just didn't feel healthy. But for me, things just got better and better over time. Now, I feel good most of the time. I just have to be aware of my body...

[cybersis]

Funny I came in to post about this very subject. My pain has subsided at lot, but I still don't sleep through the night and still pee every hour to every hour and fifteen minutes. I get twinges if I eat the wrong thing so am pretty strict with my diet. But on the whole feel a lot better. My "flare" started last May and has lasted up till about one month ago. Now I just take one day at a time, one meal at a time. I am back to exercising, walking the treadmill or riding the recumberant bike. I also lift light weights, nothing like what I use to do, but still feel better then I have done in months. I am on no medication as the Elmiron gave me terrible stomach problems and my GP is still searching for a Uro. I too wondered if I was heading for a remission or was in one right now. I think I will just say a little prayer and hope that this phase lasts a long time. Not pain free but able to resume a semi normal life.

[PenguinK]

I came on to post the same thing!
I was told on Thursday that I am apparently in my own type of "Remission". I haven't had to use a prescription pain pill in two weeks! I am thrilled! :woohoo:
The whole doctor's office was throwing a little party when they heard. They've seen me at my worst and are very happy to see me walking on my own and smiling. :)

The doctor decided that my combination of meds (Elmiron, Flomax, Atarax, Prelief, and Birth Control hormones) is apparently working. From now on it's up to me and my diet/activity to ward off any flares. I only need to be checked every 3 months for liver problems from the meds.

It's not to say I'm completly symptom free, I still have mini flares, but nothing as bad as it was before the meds. I am really nervous about reintroducing foods into my diet to see what I can/can't eat. I had a Peanut butter and Jelly sandwich the other day that about sent me through the roof! I love these and will be upset if I can't ever have them. I also had a little chip dip on Super Bowl Sunday with a Cheesesteak (peppers and Onions) that Prelief apparently couldn't handle. OW! "Please pass the heating pad."

I'm glad you are all on the right track too!
Good luck!
KK

[jeanann2]

that I have IC.....I have had about a year of pain free....and be able to eat most anything, however, I do stay away from certain things that will iritate my bladder....like soda....that really iritates it.....

I drink lots of water....I recently was under tons of STRESS....and of course ate things that were not good for IC and well I am in a flare....however, I seem to be dealing with it better than I use to. The pain is not as bad as I have caught it in time and am doing my own DMSO treatments.

I dont get up at night to pee at all.....its strange....yet during the day I have the fullness and pain.....

Any way nice to see you all...

Jean Ann