Question about flares.

[Terch]

Since I have a to wait a couple weeks to see my GI I was wondering if maybe someone could answer a few questions.
First off can any of you remember before you were diagnosed if your symptoms tended to come and go? I have some weeks that I feel totally lousy and then maybe a good day or two, not back to normal but pretty good.
When you are not on medication do you have bad times or as soon as you feel lousy do you start on medication? I do know from what I have read that this disease goes into remission but is it full remission in the sense that you always feel completely well?
Anyway, I still think that I do not have Crohns still think I have Celiacs but I am going to wait to do more testing after I see my GI. And since he ruled out celiac I think I am going to have to go another route.

Thanks Terch

 

[DannyB]

First off can any of you remember before you were diagnosed if your symptoms tended to come and go?

My symptoms come and go even now twenty years after diagnosis even with medication. I think its part and parcel of having crohns disease, some good and some bad days.

When you are not on medication do you have bad times or as soon as you feel lousy do you start on medication?

I have always been on medication and that is what keeps my condition under some form of control. Stopping and starting meds isn't advised.

I do know from what I have read that this disease goes into remission but is it full remission in the sense that you always feel completely well?

I felt as though I was in remission for a while there and I felt completely well and apart from taking meds forgot about having crohns at all but then it all came back to earth with a bang and away I go again back into the cycle so I think it varies between person but remission is different for everybody.

I hope I have helped a little bit. Take care

 

[mikeyarmo]

Usually before you are diagnosed, symptoms are much more volatile. The vast majority of days are uneventful (disease-wise), and every now and again you may have some minor symptoms or some more moderate ones, but these are not very frequent. You can always seem to find something to blame it on (stress, food choice, etc.) so you do not always consider those symptoms problems.

This is why it is often hard to ask people exactly what it was like before they were diagnosed or how long they had symptoms. Some people think they have had symptoms pretty much all their life and others are able to pin-point a more general time.

 

[Cara Fusinato]

"First off can any of you remember before you were diagnosed if your symptoms tended to come and go?" I, oddly, had not a single symptom before the big bang and I got diagnosed and my life changed in one day. But during my first flare which lasted 8 weeks, I had up and down days. Days I didn't want to get out of bed and days I felt fine.

"When you are not on medication do you have bad times or as soon as you feel lousy do you start on medication?" The only med. I stop and start, at my GI specialist's permission is Enticort. If I start to go into a flare because I have eaten badly, I have been told to take 3 enticort for two days. It seems to stop the flare. But I can't take enticort longer than that because it makes me want to kill people. Not pretty!

"I do know from what I have read that this disease goes into remission but is it full remission in the sense that you always feel completely well?" I've gotten mine into remission by taking an alternative med. I pretty much feel completely well, except for the fact I have strictures (narrowings) and I can easily eat wrong and irritate that by kind of blocking it or by eating the wrong type of food that upsets it. So one may be in remission, but one should stay on the meds, and one must always be aware and self evaluating. It's not something you can just forget about and feel fine and go about life like it's not there.

Hang in there, listen to the doctors, ask us questions, feel free to vent . . . we are all in this together.