What is "normal"?

[Manzyb]

When you are in remission, or are having a period where your disease isn't quite as hectic as usual, do you feel good all of the time?

I don't really remember in the last 12 years when I had a day when my stomach didn't hurt at all. I've yet to been in remission since I was diagnosed all that time ago, but it seems that even during times where I'm feeling better than usual, I still feel bad!

Does anyone have times where they have no pains or ailments at all?

 

[ellipse22]

Normal is different for everyone. For me, when I'm not having an episode I "almost" feel normal but then again I'm not sure what normal is anymore. A normal BM is good enough for me lol

 

[archie]

I always wondered this I'm in remission since surgery last year and I def get good long episodes were I'm normal saying that I still have a sensitive tummy and the slightest thing sets it off a bit like IBS. I am only writing this as at the moment I can't sleep due to a couple of different pains in my tummy but I have become accustomed to this (if that makes any sense). Diet def plays a big part I am currently fighting off a bad chest infection and the amount of tablets I've had to take have certainly caused tummy pain. I just think this is all part and parcel of crohns unfortunately

 

[Entchen]

Hey Manzyb

I have little or no stomach pain most days, which is a point I wasn't ever sure I would reach. Interestingly, I am not in remission -- in fact, the Crohn's has spread to a new location. But Imuran seems to be keeping the pain mostly at bay.

What lingers is fatigue. It's improved, but I still need a nap most days. And I get aches and pains, especially in my feet. Still, I have periods of feeling well and it's...lovely (and then one of my fistulas abscesses and I feel disgusted and/or sick again, tee hee).

 

[Manzyb]

i know, everyone's different. I was just curious how everyone else gets by on a regular basis! The last time I felt the best, was back in 2008. My husband was in Iraq, and we were stationed out in the middle of the mojave desert in Cali. I was going to the gym twice a day for some cardio, but I also got to to go to the pool every day and soak up some sun. The feeling of the hot sun on me always made me feel pretty good! But, I just always remember still having at least part of the day where I felt bad.

i think my "normal" is just a constant state of crappiness. Not always horrible, but just never really feel all that great.

 

[Manzyb]

Entchen-the fatigue is a killer! I think I would do a lot better if I wasn't quite so drained all of the time. I've been looking for a supplement that is an energy booster. I take B12 shots, but doesn't always seem to do the trick!

 

[JMC]

One of the hardest things with a chronic disease like Crohn's is that "normal" can be reset to something that is very different to a normal person's "normal". Over time, we tend to cope with a lot, whether it is pain, frequent toilet visits or mental health issues like stress or anxiety, so normal becomes a relative, not absolute concept.

For me, keeping an accurate diary helped me to identify when I was truly "normal" again, but sadly that happens to be very rarely and never for many consecutive days.

 

[archie]

That is a very good description JMC I couldn't have put it better, and I think the key is that it isn't always on consecutive days. You are right we do learn to put up with things and not grumble about the day to day pain / toilet visits, no-one really wants to know every detail and nor would I want to tell them.

 

[kiny]

I'm in remission completely and nothing hurts.

I went from playing with death, completely blacked out unconscious, to no pain whatsoever. I was 80 pounds, now I'm 150 pounds.

There is something called the Crohn's Disease Activity Index, which measures how you're doing.

But to me remission has always meant 0 symptoms.

 

[Mapper]

For me, yes, when I am in remission, I feel totally normal. No pain, no diarrhea, I can eat anything. I still feel tired, but I think that has more to do with three young and energetic boys and not enough sleep. I should add that my CD so far has been inflammatory in nature and I don't have strictures or fistulas. I do have some scarring in the TI. (doctor called it moderate/severe but I'm steroid dependent)

At the moment, I'm waiting to get back to normal and I feel like I'm nearly there. I'm off the prednisone and I'm in the process of figuring out which foods seem to be triggering me, combined with waiting for the methotrexate to kick in. Right now, I'm down to just one trip to the bathroom a day and some occasional twinges of pain, unless I eat a bad food, then I have pain and D within hours. I know that may sound great and normal to many people here, but I also know from experience that I can be even more normal than that. I want to be not just normal, but super-normal!