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Remission---what does if feel like?

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Crohn's Disease
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Posted 1/4/2009 11:16 PM (GMT 0)
My DH has been yelling at me and it doesn't help matters. One minute Im feeling fine, the next Im flaring again. This morning the pain was so bad I couldnt walk and it finally subsided. I could hardly breathe.

Hours later, I think it was gas...wth?? because after I passed a little, the pain got better. If this is remission....why does it hurt so bad. Ive been on Humira since July and off steroids except Entocort since Oct. I still have long episodes of pain and any kind of gas in me hurts like hell. Bowel movements hurt. I still have cramping.

if my CT's are showing improvement...then what is the problem. What is remission for you? Is this my future? every 3-4 weeks I have this pain and more blood then I get a steroid shot and some pain pills and back to square one.

Posted 1/5/2009 1:11 AM (GMT 0)
For me, remission was 4+ years of being normal. Almost never having pain, having normal bms, eating almost everything (except I have a stricture so no nuts ...). I even got to where I mostly forgot I had the disease. I'm hoping I can get back to that soon.
Posted 1/5/2009 2:06 AM (GMT 0)
For me, I experience a total of 3 weeks in remission out of my almost 7 years of having Crohns.  It was the best feeling in the world... I would eat and OMG not have to go to the bathroom, minutes or even hours afterwards.  I had no pain.  I had so much energy.  Ive told my friends, family, and doctors that I would kill to feel like that for only one more day in my life.  I honestly would do anything for that feeling again...Crohns for me is like being in jail for years for no reason, and finally being let out for 3 weeks, but then drug back in...it was heartbreaking.
Posted 1/5/2009 3:01 AM (GMT 0)
I (and probably wrongly) consider myself in remission, since my "normal" Crohn's symptoms are not the usual for the disease. So while I am nauseous every time I eat and I get horrible gas pains much of the time, I still consider myself in remission overall since I have no bleeding, which was really my sole Crohn's symptom. Never really had D with this disease, so it's harder for me to tell.
Posted 1/5/2009 3:58 AM (GMT 0)
Remission is when I'm not having pain or D all the time. Also no joint pains, swellings (I had my lip and hand swell during my last flare up). Before being diagnosed I had D and pain EVERY single day for probably 8 years. It was hard, and my husband wasn't always great about it either. I heard the usual "go to the doctor and get it "fixed" already!" Sure, no problem!

Even in remission I have my bad days. But over all it isn't like a flare up!
Posted 1/5/2009 4:41 AM (GMT 0)
Remission, at least as close as I've gotten to it, is getting through a day without the constant cramping, BM's, and being able to eat. Ah, and also, getting things done!
Posted 1/5/2009 4:43 AM (GMT 0)
I would say that remission is feeling exactly as you did before getting sick...it's been so long (18 yrs this yr) so I vaguely remember it.

:)
Posted 1/5/2009 4:55 AM (GMT 0)
I was in remission for a couple months-- no bleeding, no D, no cramping, no urgency. It was great! I hope it will come back soon. It was awesome not to have to second guess going out and worrying at work about going to the bathroom.
Posted 1/5/2009 6:14 PM (GMT 0)
Hi songstress could be your diseased TI area giving you so much pain when you pass some air things get better sometimes I couldn't pass air and yah it can hurt.

Remission is for me no pain, eating on a regular bases ,and having some kind of life where the hospital isn't always on my mind. Hope you get at least that far someday. lol gail
Posted 1/5/2009 6:16 PM (GMT 0)
Remission is different for everyone. I never had bleeding or weight loss and have always been able to eat anything. I didn't really have too much pain either. Just the big "d" constantly. I was told I had IBS. Yeah, Right!!!! Ended up having an emergency resection because this disease was slowly doing damage. Now I'm back to where I was years ago. Still have "d" occasionally but not constantly. I do run low grade fevers but nothing terribly high. And I do have joint pains but I'm considered in remission.

One thing I have noticed is that I don't have the numbing fatigue I had before surgery.
Posted 1/5/2009 10:31 PM (GMT 0)
For me Remission means you go back to life again. I was in a remission for about 4 month. these 4 months were the best for me. I was eating every thing. No maintenance Meds, Happy, and very active and full of life.

I wish I will be in a remission soooooooooooooooooooooon. I feel I'm very close to it.
Posted 1/5/2009 10:52 PM (GMT 0)
Songstress, I would advise you (and your husband) to be patient. It can take a long, long time to recover after a severe bout of Crohn's.

The fatigue and the pain may resolve in time, but then again, they may not. The one time (1995) I hit remission, I was always in pain, and was told that it was because my nerve endings had been "educated" into transmitting pain, even when there was no inflammation.

For me, remission was the freedom to travel 1,000 km to see my relatives without having to stress about bathroom issues. I still got tireder, and tired more quickly, than "normal people, but still had enough stamina to get out and enjoy participating in a drama production, having a casual job, going to uni, things like that. My diet was more varied and I had more freedom to push myself, instead of always having to keep "spoons" in reserve for tomorrow.

I hope this helps!

Ivy.
Posted 1/6/2009 9:27 PM (GMT 0)
thank you all...well my GI has decided to do another endoscopy and colonscopy this month, my next one was due in April. Im anxious to get the results!!

Posted 1/7/2009 12:06 AM (GMT 0)
hey there,
Remission for me is being able to eat whatever I want, but sometimes having diarrhea (liquid stool) for no reason. Don't have pain much anymore but did have an abcess.
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