Years with disease / Years in remission

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Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/19/2009 11:16 AM (GMT -7)   
I was hoping some of the longer term patients could offer up some information for us relative patients:

How many years since diagnosis / how many years in remission (little to no symptoms)??

I have a facebook friend who has had the disease for 26 years but been in remission for 17 - which I think is pretty good. Just looking for some feedback!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 10/19/2009 11:50 AM (GMT -7)   
Hi, check out my signature below. Hoping to get a long remmision again!!! This time around i'm staying on meds though. Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/19/2009 11:59 AM (GMT -7)   
I have had Crohns for 34 years now. I once enjoyed a 20 year remission, but because I didn't take medications I ended up with a total obstruction requiring an emergency resection. I am back in remission now, and always use my maintainence meds now. It has been a long hard road to get back into remission, so I will always take my meds and highly recommend you do the same. Hope that helps.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 10/19/2009 12:03 PM (GMT -7)   
30 total, 10 somewhat livable (call it remission), 20 struggling or lousy. Your friend is opposite, and prompts asking them about general treatment recommendation for their 'remission'. The pigeon hole effect from remission/nonremission times is devastating because of the overall loss of progression. As overachiever I have had some of my greatest accomplishments during flares. But sometimes you cant help but think in retrospect the analogy that someone has cut in front of you in life's experiences (a couple hundred times over) My overall description would be far from your phrase of 'pretty good'.

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 10/19/2009 12:05 PM (GMT -7)   

Diagnosed early 2002 so its been 7 and a half years,

Am in my 4th remission at the moment.

1st remission lasted 2 years (flared again due to maintenance drug tapering)

2nd lasted 3 years (ended as didn't realise maintenance drug effectiveness was wearing off so had an infliximab to get back into remission but didn't change the maintenance drug dose)

3rd lasted 6 months (ended as maintenance wasn't strong enough to keep the effect of the infliximab going, so had another infliximab and now on a more potent dose of maintenance)

4th......8months in and still going strong - hoping that now the drugs have been tweaked I can be in remission for a loooong time again :-)


 
 


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/19/2009 12:24 PM (GMT -7)   
medchrt1 - to answer your question about my friend, she was on 6MP for 11 years of remission and then had one infusion of remicade back when they didn't understand about the maintenance dosing. She discontinued 6MP and stayed in remission for an additional 5 years with nothing (this is post-remicade). When the disease returned she achieved remission with humira. I know what you're talking about with the loss of progression. I teach physical education at the United States Military Academy and I always have to build myself up after losing much during a flare. It's only been 2 years since my diagnosis and I have had more bad days than good at this point.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/19/2009 1:41 PM (GMT -7)   
I was officially diagnosed in 1987, but I suspected that I had CD in 1977. I think there was a lot of damage done in those 10 years. I had some pretty bad years between '87 and '98 with 3 resections. But I also had some periods of calm, not sure I would call it all remission, though I was off all drugs for a good 2 years while trying to get pregnant and carrying my daughter. Since '98 I have had what the doctors call very minimal ulceration at the site of the anastamosis. So they consider me to be in remission, though I do have my good days and my bad days. I will never again go with out maintenance drugs since I know what those 10 years did to me. My Mother, who also had CD had over 20 years of remission, so I am hoping that I can follow in her footsteps. Most of my disease has been exactly like hers, right down to the timing of diagnosis, 1 year after the birth of our first born, so I think I may have another 9 years or so left in this good days stretch. Keeping my fingers crossed.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 10/19/2009 7:37 PM (GMT -7)   
7 years with Crohns......3 weeks total of remission
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Sept 4, 2009 to Take Down Abdominal Fistula!!  (On hold until current flare is under control, boo!)
 

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/20/2009 6:03 AM (GMT -7)   
My husband was officially diagnosed with Crohn's in April 2008, as part of a terrible flare with c-diff as well. Since being put on remicade, he's been in remission since May 2008 (so about 1.5 years now). Hope it continues a long long time. :-)
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 10/20/2009 7:19 AM (GMT -7)   
Diagnosed in '82, but probably had mild CD prior to that. Over the past 27 years I've been in remission or with little symptoms most of the time. I had a major flare in '82 that led to a resection of terminal ileum. On meds a couple of years after that then a GI declare "there's nothing wrong with you"! (Idiot!) Mild symptoms til 2002 then started into major flare with no meds. In the last 7 years, I've been on pred, remicade, 6mp, asacol and have finally gone back old school with sulfasalazine. Have minor issues if I don't watch my diet, but otherwise doing well.
 


tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 10/20/2009 7:52 AM (GMT -7)   
I was diagnosed in Feb of this year and am looking forward to remission. I can honestly say things have calmed down a lot but I wouldn't say I was in remission yet.
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