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Crohn's Disease Forum » General IBD Discussion » How is it ever "Under Control"?


09-11-2014, 10:47 AM   #1
Asher
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How is it ever "Under Control"?

I'm learning as I've only had one flare up out of nowhere and was just recently diagnosed.

I see people saying they have it "under control", but if flare ups can happen out of nowhere (and even on meds) how do you ever know it's under control? Where does this confidence come from?

I've had to take some time off of work, as I am a freelance worker. And I recently started getting some calls to do freelance work again, and I'm just so scared. My job is grueling. Out doors all day without quick access to bathrooms (sometimes bathrooms are Car drives away). My work hours are 16 hours a day. I just can't imagine going back to my job since I'll always have in the back of my mind "What if I get sick today?'
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Crohn's diagnosis: 9/2014

Medication:
Lialda 800mg (3x)
Remicade (started 12/2014)

Past Medication
ASACOL HD 800mg

"Be Joyful in Hope, Patient in Affliction, and Faithful in Prayer"
- Romans 12:12
09-11-2014, 05:59 PM   #2
D Bergy
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You never know with 100% certainty if remission will last. Under control just means presently. But, you can be in remission for months or years. No way to know ahead of time.

You learn to live with the uncertainty, but worrying about it is not real productive.

Dan
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09-11-2014, 06:24 PM   #3
shamrock15
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I see you are a recent diagnosis - within the last two weeks. You are going to have a lot of questions. A couple things to keep in mind as you start your journey with this wonderful condition.

No two people have the exact same symptoms and reactions. Yours will be as unique as you are. While others will go through similar problems (and hopefully successes) you will have to do at least some of this on your own.

You will need to learn to be strong. Mind, body and disposition. Crohn's can easily knock anyone of us down. Learning to get up is going to determine how you do with it. With good management from your medical team, there are very good chances that you can live a pretty normal life and probably very soon. You will need to learn how to push doctors a little - pretty intimidating thing to have to do, but it can make the difference between being successfully treated and being ignored by the medical system (especially in Canada).

If you want to do well, you will likely soon know more about your bowels and immune system than many in the medical community. There are a few members here who have an amazing depth of knowledge, and they are willing to talk. Take advantage of it.

Keep journals on you diet and your reaction to food. The effects are not always immediate, and the journal can really help.

I consider this probably most important - try to not be paranoid and try as much as possible to both continue with your life as it was before and also have fun. You will of course have to change some parts of your life, but you can achieve a tremendous amount once you realise what your capabilities still are.
09-12-2014, 10:21 AM   #4
David
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Some good insight in this thread

"Under Control" is pretty subjective. For some, under control may mean they have active disease but it isn't materially affecting their lives. If I was a GI, the only time I would use the term, "Under Control" was if my patient was in deep, stable remission. Otherwise there is active inflammation which, over time leads to a host of problems.

Be sure to read our wiki entry on the various forms of remission: http://www.crohnsforum.com/wiki/remission -- in my opinion, it's one of the most important things for people with Crohn's to understand.
09-13-2014, 02:09 PM   #5
steph_irish
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Hi there ....my disease affected my life for the first year. Then managed to get symptoms under control. Like u I worried about my work ethic and dealing with crohns. I identify my triggers and avoid. Medication works once the right dose is administered. Trial and error. You'll get there. Keep the faith
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[B][I]Crohns Disease

Meds Pentasa, Omeprazole, Buscopan, Prednisolone, Azathioprine, Infliximab.

Surgery's : loss of fallopian tubes and scarred appendix
: chronic sinusitis
09-13-2014, 02:34 PM   #6
indianhart
 
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Life with Crohns.....is different for everyone BUT we can find comfort from others that suffer from a chronic illness. These forums are so important for me and hopefully will be for you. Life is full of change and this disease was just one of them for me. I was diagnosed when I was 27, but believe I had this for some time before. I am now 48. I don't think I've ever been in "remission" but definitely with medicine have had more good days than not at times. I thought after having surgery (13 inches removed) I would have relief but to my surprise I am still suffering. So back on Humira. This is my life and sometimes Im okay with it and sometimes I am not. But isn't that life? Don't let doctors dictate how you are feeling, you know how your feeling and it is real. Crohns is a invisible disease, something that isn't necessarily seen on the outside but is still there. Life isn't always horrible when you are dealing with Crohns. I will be having my first grandbaby in Oct. This alone puts my head in a whole different place making me want to feel good so I can be the best Nana I can be!
So hang in there our Crohnie and know you will adjust to whatever life hands you....we are just lucky to have this Crohn's forum!
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