My odd reaction to remission

[partlycloudy]

So it seems I'm in remission based on my recent colonoscopy and blood work despite my having symptoms still. I saw that there are different types of remission where you can be clinically in remission but still have symptoms. I will talk with my doc about this in my follow-up appt.

Anyway, at first I was delighted but then last night had a bad reaction to a salad and had to cancel a shopping date and felt compelled to over explain myself. I think that if people know I'm in "remission" then they think I'm faking any symptoms.

I'm finding "remission" to be far more stressful than "not remission." I'm putting all this pressure on myself to act like I'm in remission. Yeesh!!!

Has anyone else experienced this response? :ymad:

 

[Jim (POPS)]

I can't talk to much about remission but I saw that you are on Imuran 150mg a day. I am also on that amount and hope to go into remission soon. Can you tell me how long you have been on Imuran and how long you have been in remission.

Thank you.

 

[xX_LittleMissValentine_Xx]

Just a thought but, maybe you don't really need to use the word "remission". It is slightly ambiguous anyway. I mean a flare can come on at any point, or you can have occasional bad days. You just feel how you feel. Why should you have to explain yourself to your friends if you can't go out? You have crohn's which means you have good days and bad days.
I hope you start feeling better soon x x

 

[shamrock15]

remission - another thread going on here wonders just what it is. Good question. You haven't indicated what your previous experience with the disease is - have you had resections, have you had scarring, do you have strictures that currently are not getting worse? All of those will affect how you feel when your disease isn't active. remission does not mean a complete cure. For me, I have had several feet of bowel removed and still have some stricturing, so remission will never get rid of or make up for that previous damage. What were the symptoms of the "bad reaction" to the salad? That might provide some clues, and you may still need to exercise caution with your diet regardless of being in remission.

 

[Cat-a-Tonic]

Partlycloudy, this sounds a lot like my remission. I've been in remission for a couple of years now. If I eat the wrong thing (dairy, red meat, nuts/seeds, most fruit & veggies, etc) then I still get some symptoms. As I see it, remission for me doesn't mean 100% better. It means that some days I can feel 99% well, but just because the monster is sleeping doesn't mean the monster is gone, so I'll never be 100% and I accept that. My digestive tract went through a long time of illness before I hit remission, and I accept that my body has been forever affected by that and that it works differently now, so there are still a lot of digestive "quirks" and always will be. I'll always have an illness, even if it's not always active, so I still have to behave in some ways (like avoiding trigger foods) as though I'm ill. Yeah, in a way it sucks, but remission is still very good and I'll take this any day over a flare obviously.

 

[partlycloudy]

Thanks everyone! I realized after reading these replies that I'm putting too much stress and pressure on myself to live up to "remission."

Jim, I've been on it about 9 months, give or take a month. I honestly don't know how long I've been in remission as I only just now had the colonoscopy. My blood work is always fine and never shows inflammation markers even without being on Imuran. I hope it works well for you! I personally started feeling better withing a week of starting it.


Little Miss Valentine, you're right. And my friend did understand as she has bowel issues herself. It's my own issues really that I'm dealing with. The pressure is self-inflicted.

Shamrock, I'll look for that thread. Thanks for mentioning it. My bad reaction was a ton of gas which caused a ton of pain/nausea. It wasn't what I'd call a Crohn's "attack" as the pain was different but it beat me to a pulp anyway. No strictures to deal with but I've been told I have a lot of adhesions due to previous abdom surgeries and I think that's what the problem was as much as Crohn's.

Cat-A-Tonic, good points, all of them. Damage has been done as it's been 5 years since I was dx'd. I'll never be the same again. I'll always have to watch what I eat and my activity and cater to this disease and be gentle with myself. Being gentle with myself is the biggest issue it seems.