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What is a "Remission" exactly?

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Posted 11/17/2010 2:50 AM (GMT 0)
Hi everyone.  I was just wondering what remission means to you.  I've had crohn's disease for about 7 yrs now and i've never been in one.  Sooo I was wondering what remission exactually is.  Is it different for everyone or is there a medical diagnosis for remission?  I feel lousy.  I've had surgery in 2008 where a foot of my small bowel was removed and my terminal ileum and ileocecal valve were also removed.  I've had my gallbladder removed and my appendix.  I had an ileostomy  for 3 months while my intestines healed from surgery.  I've been on all the heavy hitting drugs.  Methotrexate, humira, cimzia, 6mp, asacol, colozal, azulfadine, pentasa, steroids, now i'm on cimzia, allopurinol and azathioprine.  When do I get my "remission"?  I've had blood transfusions and iron infusions due to this disease.  Just curious as to other people's experiences with remission.  Thank you all in advance.  :-)
Posted 11/17/2010 3:09 AM (GMT 0)
the way i found out I was in remission was when I did the scope and the doctor couldn't see any crohn's (I mean nothing, I am completly clean of CD) this was after remicade and humira (which neither of them I can take anymore because it had attacked my joints causing servre arthritis)

I always thought about this day, thinking I would be able to eat a bowl of salad again or a tomato sandwhich. But i still can't and my diet is still limited like before. I can eat corn tho!! :) and pizza (anything with tomato sauce now as before I couldn't) unlike you I also have endometriosis which are basicailly the same symptoms as CD so I still get the  running to the bathroom at that time of the month, and when it is that time of the month coming my diet is back to my flared CD days. So I don't find much of a difference post remission.

I so very much hope you get your day real soon, and you can add to you limited diet. HERE'S TO HOPING!!!!!!!!!!!!

Keep us posted. Feel well xo

Posted 11/17/2010 4:40 AM (GMT 0)
the definition of remission from clinical trials is a Crohn's Disease Activity Index (CDAI) score of less than 150. Personally, I wouldn't be satisfied with a score of 100-150
Posted 11/17/2010 4:57 AM (GMT 0)
Remission can mean a lot of thing for a lot of different people. The definition is "the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity" And I believe just that. Not so much the test results but how I am feeling. If the colonoscopy results come back negative but I am still having arthritis pain or stomach cramps for instance. I feel that you should be feeling like you did before you were diagnosed. But that is just my opinion. Take it with a grain of salt.
Posted 11/17/2010 3:03 PM (GMT 0)
Good question, as niether the medical community nor patients agree on what remission means. The CDAI is getting a lot of criticism and justly so, from docs.

Clinical trials like the LDN trial did use the CDAI, but it also used indicators like CRP, ESR (sed rate), and colonoscopy to check for mucosal healing. Right now there is some debate over whether mucosal healing (meaning a clean intestine, corroborated visually) should be one of the end goals of remission. Some doctors and patients use no symptoms as the definition for remission. Other docs, like Dr. Lutz, look at iron levels as yet another sign of remission - they tend to rise as Crohn's patients heal.  

In my opinion, the definition of remission should mean a cessation of disease activity and include at a minimum: 1) no symptoms, 2) healthy HGB (hemoglobin, CRP, ESR and other lab markers, 3) a clean colonoscopy.

You can have no symptoms, like my daughter, but the disease is quietly festering, causing ulcers and strictures in the intestine, so that is not remission. You can also have healthy blood markers, but symptoms, so that is not remission. Similarly, if like outpatient, if you have a clean colonoscopy but you have symptoms, then that is not remission.

Posted 11/17/2010 3:03 PM (GMT 0)
I am currently in remission, but life isn't perfect. Because of the changes that happened in my resections, I no longer digest things the same. I also suffer with Fibromyalgia and Osteoarthritis, so my joints are always in an uproar and painful.

So yes I am not running to the bathroom all the time, my tummy pains aren't there most of the times. But...I still can't eat anything I want, and if I eat the wrong thing it will knock me down for a day or two.

Its better, but definetly not perfect. Hugs to you!
Posted 11/17/2010 5:27 PM (GMT 0)
My remission was basically that I felt like I did before I was DX. I have not yet had major surgery or any bowel removed so things were working fine inside and I didn't have to adjust to having some of my intestine gone. I didn't need a colonoscopy to confirm it - my diet and health were "normal." So to me, I was in remission for 12 years. Albeit- with daily meds and vits to keep it going... to maintain my remission so to speak. That is how I defined it. However you can have active crohns without symptoms so I would think that feeling good PLUS a healthy scope/testing would be the best and most easily confirmed remission.

Hope you get to have your own remission very soon.

B
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