Crohn's Disease Forum » General IBD Discussion » How long has your remission been?


06-30-2012, 07:42 PM   #1
Thunderstruck
 
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How long has your remission been?

I know this is a very vague question, but this is out of pure curiousity. I am currently in remission and have been for 3 years this July. I am post multiple obstructions, multiple fistulas, 3 resections in one surgery, major malnutrition(76lbs at the age of 23) as well as have an ileostomy. I was placed directly on remicade and have been on it ever since my diagnosis. I have excellent lab values, a healthy weight, and work as a nurse helping ostomates After years of pain and hospitals, this seems like a godsend.

Enough about me, I would like to know how long some of your remissions have been? It seems like I am contstantly worrying about when the evil little disease will make its way back. And I am well aware that stress can trigger symptoms!! For some reason I cant shake the feeling. This is the first time in years I have had a great quality of life, which I never thought possible with an ileostomy. Im so glad I got it Anyways, I would like to hear some feedback as to how your remission/returning flares have been. I know everyone is different, but Im new here and most Drs tell me to expect a flare in the near future. That it almost always comes back. Thats not very reassuring!! Thank you all for taking time to read this
__________________
Diagnosed with Crohn's in 2006
3 resections with Ileostomy at age 24 in 2009
Multiple I&D for spinal fistulas

Currently on:
Remicade every 8 weeks
Vit D
Zofran as needed

Happily married and working as a Registered Nurse. Studying for the ET licensure so I can help my fellow ostomates!!
06-30-2012, 09:05 PM   #2
Samboi
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Ten years is usually what I get.
Major flare that lasts about 6-12 months, then back to a long remission.
I get little niggles during my ten years - but no surgery etc.
I've currently got a temp ileostomy - and recently started Humira.
Have a slight fissure and urgent mucus poops - but consider myself to largely be in remission at the moment.
Live it up in remission!! I'm trying to cram heaps in whilst I'm relatively well!!
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Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Filgotinib trial Jan 2018
06-30-2012, 10:21 PM   #3
Susan2
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13 years so far!

Like you I had multiple obstructions, multiple fistulas, multiple resections, dropped to 40kg (88 pounds), then had a proctocolectomy 13 years ago. I have an ileostomy and am not on any medication. Like Samboi, I have little niggles - have to watch my hydration and what I eat and that I get sufficient sleep - but I travel a lot and lead a full life.

Worries about Crohn's rearing its ugly head again do bother me from time to time, but I try to banish them as soon as they appear and just get on with my life.

Enjoy life while you can at the same time as giving your body all the help that you can to keep the Crohn's at bay - eat well, exercise, do some meditation/relaxation/yoga-type practice and try not to worry or stress about it.
07-01-2012, 01:57 AM   #4
archie
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1 year and 8 months in remission since I had an ileocecal resection. I'm Not on any meds and all recent tests are normal I still have the occasional bad stomach day and symptoms of IBS now but I'm pretty healthy and lead a very full and busy life with work, kids and exercise. I feel quite energetic but still have the occasional dip. I have to avoid certain foods but in general lead a totally normal life.
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Archie

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

07-01-2012, 11:02 AM   #5
lookame
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My remissions only last a couple of months, then the drug quits working
__________________
Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

Current meds-
Prednisone, humira, 6mp, and lialda
awaiting surgical consult

Mom of Little Z
eosinophilic esophagitis 5/2015
07-01-2012, 12:08 PM   #6
randy.stand
 
Join Date: Apr 2012
Was in remission ever since diagnosed, 8 years ago, but the Azathioprine clearly stopped its impact in April this year and still in a flare. Waiting for my Doctors appointment on 10 July to hopefully start new treatment and get back in remission. Flares suck.
07-01-2012, 12:33 PM   #7
PsychoJane
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I have been in remission for 10 years after my first flare (which was recompensed by and ileostomy). Then I've been trying to get into remission with medication for the past 2 years-ish. Everything was mostly fine at the exception of multiple recurrent fistulae that had to be removed surgically. I therefore consider myself in remission and hope for another "years-lasting" remission.
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
07-01-2012, 12:35 PM   #8
EthanPSU
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Been 6 years since diagnosis, still no remission, jumping from medication to medication, hoping humira works this time and I can start remission.
07-01-2012, 05:25 PM   #9
silvermander
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I was diagnosed at age 8, had a resection then. From that I was in remission until I was 16. Since then I've had a few good years here and there, but I haven't had a full year of remission since.

It's almost 30 years to the day since my first resection. So maybe 12 years of good out of 30, and 8 of those years was all together. Kind of sucks.
__________________
30+ years of Crohn's Disease and many strong opinions.
Diagnosed - Age 8, 1981
Small Bowel Resections - 6 - had a fistula and 6X8 abscess, as well as some small bowel removed - 9/2/11
New abscess, named Albert! 7/7/12
Prednisone - Way too much & never again!
Cimzia - Started 5/20/11, hoping for the best. Scared that it won't work, like everything else.
Humira/Remicade/Imuran/6MP/Flagyl/ect - Been there, done that & really should get the t-shirt!
07-01-2012, 05:28 PM   #10
chrisnsteph1022
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My one remission was 6 years.
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
FB support group
07-01-2012, 06:30 PM   #11
shamrock15
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Still enjoying what is likely the end of year one of my first remission in 25 years with Crohns. Not sure why it started when it did, just glad it is here and hoping it wants to stay!
07-01-2012, 07:24 PM   #12
silvermander
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Shamrock - It's so nice to hear that it CAN happen after so long. It feels as though it's a never ending struggle right now. That maybe those 8 years was it, that I had some childhood in there, but I know there's hope. There has to be hope!
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