What exactly is remission? I thought it was when you are totally symptom free and basically living a normal, IBD free life. Or is remission not that, but just fewer symptoms and being able to manage the disease. I've had symptoms of occasional diaherra and bleeding, daily cramping and pain, and continuous fatigue since I was diagnosed (UC) last fall (2008). Are my expectations of what remission is too high? I thought I was just in a continuous, long flare, but maybe I'm wrong? Any help would be wonderful!
1/27/10 3:56pm
Hi Swimgirl, nice to see you again.
Technically, I think doctors would tell you that remission is a cessation of all IBD-related symptoms. And I know many people who actually have periods where they have no symptoms, then have a flare, then go into remission, etc.
I also know more IBDers like me who consider a flare to be when there is active diarrhea with more than 3-4 D BMs per day, fatigue, eczema, etc. Flare periods render me useless - to tired from bathroom calls, lack of appetite, and general exhaustion to really be useful and live life.
Remission for me is 1-3 non-D BMs per day, no eczema, energy at a decent level, and no joint pain. I can work, live life, and generally exist pretty well. In all honesty I don't think I've every had a fully symptom-free week since I was Dx'd more than 10 years ago, but then again I also have been Dx'd with IBS on top of the UC and I'm now gluten-free so I'm always having to think about what I can and can't eat. But, as long as I can function, eat, and not be in the bathroom with D most of the day I consider life good.
As with the disease, I kind of think remission is a person-to-person thing to.
Best,
Elizabeth
1/28/10 12:24pm
Swim,
Actually, what you've described above still sounds like a flare to me. I don't have joint pain or actually feel exhausted (tired, yes, exhausted, no) when I'm not in a flare. And I don't think most IBDers would consider themselves in remission with those symptoms either.
So, I don't think your expectations are too high. And I do still think your disease is active. Now, that said, it took me a good 2-3 years after my initial flare and Dx to get back to what I now call 'normal'. And, again, as maddening as it is, it's different for everyone.
You may have to talk to your doctor about how you're feeling and see if you need to adjust or change your medications. You might consider the SCD - specific carbohydrate diet as that helps some IBDers, especially when flaring. And I know you're young but stress comes along with any disease, so dont' forget to try and find something that helps calm your mind, and therefore your body, like meditation or yoga or rhythmic breathing.
I wouldn't tell yourself that where you are is as good as it gets, it's not, it can and does get better. If I had the symptoms you described I'd say I was in a flare. Joint aches and exhaustion are telltale symptoms of an IBD flare. But, you have to be sure to communicate with your doctor how you're feeling. It may be helpful for you to keep a daily journal so you can write it down and share it with him/her. The Remicade may actually not be the best choice for you. Or it may just need longer to take hold.
Keep me updated!
Elizabeth
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By swimgirl45— Last Modified: 12/25/10, First Published: 01/26/10
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Thank you very much for such a quick responce. It is intersting to hear that remission isn't what I thought it was. I do have joint pain most of the time, am pretty exhausted, have pains, but can carry on a pretty normal day. Its uncomfortable, but I am not bound to the bathroom (usually). I guess I am just trying to gauge whether or not I should expect more reliefe, or if where I am at is as good as it is going to get. I am not too happy with being so limited by fatigue and having to deal with the pain. I am on Remicade, as well, and I get sick from that a lot, which in turn makes my colitis symptoms worse. I guess I will have to try some diet changes and maybe other homeopathic treatments, and see if I can find more relief. Maybe my expectations are just too high, and I need to learn to live with the symptoms I have...