What really is remission??

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Regular Member

Date Joined Jul 2008
Total Posts : 82
   Posted 7/9/2010 8:40 AM (GMT -7)   
I am just curious to know what it means to be in "remission"?  My mom is so worried about me all the time.  After my resection surgery I think she thought I would be "normal" again.  I am starting to think that it is only a chosen few that have their disease go into remission, unless I am not understanding what one classifies remission as.  I try to tell her everyday it could be worse, but after telling myself that everyday, sometimes I don't have the energy left to try to convince her too.  I still have "d" everyday.  Sometimes the run before I can't make it kind.  I have missed so many of my kids ball games this summer because I am afraid to go to parks where the bathrooms aren't close.  I am tired all of the time and my joints give me a lot of trouble.  I have abdominal pain, but I have not been in the hospital for it. Does it ever get better than this?
Diagnosed with Crohns in May 08
Resection in November 08
Currently on Humira, Entocort, Xifaxan, Zoloft, Ritilan SR, B12 injections, Calcium and Vitamin D
Married, mother of 4

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 7/9/2010 8:54 AM (GMT -7)   
fongers, remission is different for each person.  Remission doesn't mean you are totally symptom free for most people and symptoms can get better and worse while you are in remission, so how you feel while in remission can change.  My Crohn's has clinically been in remission for about 4 years (although I believe I've recently come out of it...waiting to see the GI) but I have been in a constant arthritis flare for a year and half.  I have gone through periods where I could eat pretty much anything I wanted to and other periods where anything I ate, regardless of what it was or how much I ate, gave me stomach spasms.  I was able to work out at the gym for 11 hrs a week for a while in remission and then I went to where I couldn't walk without crutches (yet it was still considered Crohn's remission). 
Clinically, remission is a lack of the "typical" gut symptoms and having tests and blood work come back normal, but it doesn't mean you will feel like someone who doesn't have the disease.  You can still have the arthritis problems, although most GI's will tell you that you shouldn't have them if your gut is in remission.  You may still have d but not as often.  You may still have stomach pains and have to watch what you eat.  So to answer your question, it may get better than it currently is, but it may not.  It's always great to hold out hope that it will, as long as you don't let it get you down that it isn't better yet and as long as you don't put off doing things you want to do in hopes that you will be able to do it better down the road.  I hope that you start feeling better soon.         
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Regular Member

Date Joined May 2010
Total Posts : 88
   Posted 7/9/2010 12:31 PM (GMT -7)   
I had my resection in 2007 and have had D everyday since then. I could eat semi normal foods and was hardly ever in any pain. But like ZenaWP said, it is completely different for everybody.
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.

Veteran Member

Date Joined Mar 2005
Total Posts : 1115
   Posted 7/9/2010 12:47 PM (GMT -7)   
I was under the impression it was lack of symptoms and normal test results. I have gone through periods of the disease being more mild, but I can't say I have been in a total remission. 

Regular Member

Date Joined Jun 2010
Total Posts : 113
   Posted 7/9/2010 1:02 PM (GMT -7)   
Mine WENT AWAY and I mean totally gone once I healed from my last resection. I was on no meds at all. I had some occasional D when I ate a heavy meal but it was so not a big deal at all. It was great for a good 8 or 9 years- zero problems. I foolishly thought I had grown out of CD or something. HA! Last year it came back with a vengence. It's a lot different sympton wise than before when I was a kid but it's definitely CD and it's back and taking over.
Sorry to hear about you- I am waiting on info on having my second resection.

Regular Member

Date Joined Jun 2010
Total Posts : 337
   Posted 7/9/2010 2:30 PM (GMT -7)   
I've always defined remission as a lack of clinical symptoms and normal bloodwork. I was in remission for about 8 years after my diagnosis and I would still have bouts of pain from time to time (like if I got stressed out about something or ate something that my intestines didn't like.) I'd also get fatigued relatively easily if I was stressed out about an upcoming exam. Or I might have some C or D, but it was almost like a "baby flare" lasting maybe 2 - 3 days at most.

I've seen my patient chart and even with some active inflammation on a colonoscopy as well as week's worth of pain here and there, I'm still determined to be in clinical remission. I've also been on Colazal/Azathiorprine for 8 years...

So the disease can be active, but you can be in remission.

Honestly, I think it's how you feel and if you're feeling better then when your disease is active.

THough I hope you feel better soon...
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

75mg Imuran, 750mg Balsalazide 3x day, Tapering Pred.

Maybe flaring...maybe not?

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 7/9/2010 2:53 PM (GMT -7)   
For me remission means no pain. I have ALWAYS had D, always had bloating ect ect....it has never gone away with meds or surgeries.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 7/9/2010 4:22 PM (GMT -7)   
Remission to me is LACK of MAJOR SYMPTOMS & normal tests & bloodwork. Been in & out of it for years. But all told, my last major Flare was 6 years ago. Yes, Virginia there really is REMISSION. LOL


Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 7/9/2010 9:05 PM (GMT -7)   
I think it's having no symptoms or disease activity. Literally, being healthy and thriving and being able to eat ANYTHING like normal people without extra pain and suffering. I want this type of remission!!! Not the low grade chronic inflammation with milder-moderate symptoms that disrupt your life.
Sorry, just venting. I've never really been in remission either and it's pretty frustrating sometimes. Why won't this disease just go away?
Today, I saw my family eating spicy fried chicken wings and cheesy pepperoni pizza and enjoying it without pain and suffering and I felt a little envious.

Regular Member

Date Joined Aug 2008
Total Posts : 190
   Posted 7/10/2010 8:50 AM (GMT -7)   
I feel envious all of the time. So much I decided to eat those spicy wings and sometimes I will get away with it, but that just builds of a false sense of hope. Because the next time I eat them, I am in the bathroom with pain.
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 3x/day, 1,000 I/U Vitamin D3 2x/day, 1 Nature's Way Primadophilus Reuteri in the morning and 1 at bed time, 1 Coromega Omega 3 pack 2x/day
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 7/10/2010 11:02 AM (GMT -7)   
 A 15 yr remisson happened for me after I had a right hemicolectomyand came off all meds, from then on i had no symptoms was able to work full time, eat and drink what i wanted without any pain and kept to a steady weight I have had D ever since that op but, was told that before hand as I would only have half a colon left. The D is no big deal as im able to control that with lomotil but, sadly crohns raised its ugly head with avengence in sept 2008  Bev x 

Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
Lomotil, 20mg citalopram,VSL#3 at the moment.

“I may not be where I need to be but,
I thank God I’m not where I use to be “

Post Edited (crohnielass) : 7/10/2010 12:13:37 PM (GMT-6)

Regular Member

Date Joined Mar 2008
Total Posts : 221
   Posted 7/10/2010 2:22 PM (GMT -7)   
I have often wondered the same thing! I have had Crohn's for 3 years and I while I'm not in constant pain like I was when I first got diagnosed, I have D EVERY DAY! No matter what I eat, drink, etc. I have D Every morning, several times before I even eat breakfast! I also get tired all the time too! I feel like I can't complain though b/c at least now I'm not throwing up constantly and having a lot of stomach pain.
28y/o F, diagnosed with Crohn's Disease at 25 y/o , 2000 units of Vitamin D , 1500 Units of Calcium
60mg of 6-MP once daily since Feb. 2010

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 7/13/2010 8:40 AM (GMT -7)   
bump for potsie

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Elite Member

Date Joined Jan 2010
Total Posts : 10085
   Posted 7/13/2010 9:00 AM (GMT -7)   
I've never been in remission, but for the first few years my Crohn's was mild so it didn't really matter. Unless the Remicade works miracles, I never see myself being in remission either; my Crohn's has made itself a permanent home in both my large and small bowel so it would seem. It's also become severe. Considering everything, my symptoms aren't really that bad. But they are not getting any better, and I'm worried that they are slowly getting worse.

Tbh, I don't remember what digesting food and going to the toilet was like pre-Crohn's (11 years ago). I would consider remission going back to that state, but as I just said I don't remember it anymore. I did have constipation throughout my childhood and teens, but that sorted itself out when I learned the concept of fibre and occasionally eating fruit and vegetables and wholemeal bread. Once the constipation disappeared, I had a digestive system in perfect working order for about 5 years. Then the diarrhoea started... :-/

Regular Member

Date Joined Oct 2009
Total Posts : 291
   Posted 7/13/2010 12:19 PM (GMT -7)   
ZenaWP said...
bump for potsie


Thanks!!! turn
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