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Does Remission mean U don't have Crohns ?

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Crohn's Disease
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Posted 9/23/2011 1:55 AM (GMT 0)
I was wondering if anyone could help with a quesiton. I have had Crohn's for 5 years and finally have been able to get into remission this year after my 2nd Bowel Resection.

My question is my Gastro Dr. loves to say I don't have crohns now, since I had a bowel Resection and have gotten into remission....Do I not have crohns now? If that is correct can I eat anything I want and not take medicine? No If I Don't continue with my meds Like Remicade and Eat a certain way would I not still be suffering, So Is Crohns not still present in my body? I Can't understand how he can look me in the eye and Say U Don't have Crohns Now...
Posted 9/23/2011 1:59 AM (GMT 0)
remission means that the disease is inactive/asleep but that can be disrupted if you dont maintain a certain lifestyle. it can come back through a trigger element again. its an incurable disease so..
Posted 9/23/2011 2:07 AM (GMT 0)
Keepi in mind, IBD has quite the mind of it's own and many patients have followed all the golden rules with meds and diet, etc and still have a relapse...CD is very sneaky and it can always come back even if you don't cheat on your diet or meds, etc....You may have a better chance when you follow the "golden rules" but there's never a guarantee with IBD.
Posted 9/23/2011 10:08 AM (GMT 0)
Speaking from person experience -- no it doesn't mean you don't have crohns any longer(or right now) it's just "asleep". I was told something similar about 20 years ago, then 10 years ago went into a major flare. Which I denied was CD because the GI told me I didn't have CD and he couldn't possibly be wrong could he? Long story short, I flared terribly lost about 70lbs., almost died (again) and went back to this guy's partner who dx me with CD again. I have since moved on from that practice to an IBD specialist who keeps me on maintenance drugs because he knows better.

Has you GI taken you off meds? Please reconsider, as much as we all hate taking pills everyday. And if you even think you are having CD sypmptoms get to the doctor right away. Take care.
Posted 9/23/2011 11:33 AM (GMT 0)
no it does not mean you do not have cd, stay on top of your med's and you can stay in remission for ????????????????. I've had 4 surgeries, I thought aftewr first surgery, they took out 8ft of TI and secum valve(man I want that vlave back) I'm on ssdi because of my surgeries, short bowel like sydrome. just be careful. it has a mind of it's own(seriously, I think mind has a brain)

AG
Posted 9/23/2011 3:10 PM (GMT 0)
Nope you still have Crohns and remember this is a chronic and incurable bowel disease and must be treated at all times, especially if you want to stay in remission.

I was told almost the same thing after my first resection and stopped taking my meds. Three years later I had to have another resection becuz I had become obstructed again. Please stay on your meds, you don't want to go thru what many of us have already experienced. Plus it takes even longer to get your disease back under control. Hugs!
Posted 9/25/2011 2:09 PM (GMT 0)
Thanks for the reply's..

I have been told this from my Gastro Dr. Several times...and every time he makes that comment it makes me worry about him being my Dr. One Problem I have is I live in a very rural area, with only 2 gastro dr's...and one is no better than the other and they won't take each others patients.. I'm also uninsured which makes like with crohns even tougher...

I am very proactive in my health and try to learn and keep learning...That's one reason I love this site...No better information than from someone who is suffering like you do...Everyone please keep up the good work...U are life changers.

And Don't worry, I will take my Meds always...
Posted 9/25/2011 2:18 PM (GMT 0)
Just let your doctor know that you are not comfortable being totally med free and prefer to stay on some type of maintenance med. Let them know that you have spoken to many other longterm Crohnies who have shared their no med experiences and you aren't interested in following our mistakes. Good luck!
Posted 9/25/2011 4:36 PM (GMT 0)
I'm not able to take any oral maintenance RX meds for my CD as I'm either allergic or non-responsive. I do take naturals and have altered my diet completely also exercise regularly. I'm by no means in full remission but it's mainly due to the complications I've had with my perianal crohn's skin tags, but I still am better off than some of the CDers that are on maintenance meds...I have an average of 5 BM's/day, formed, no bloating, excessive gas or mucuos.

So not all CDers that are not taking maintenance meds are necessarily that bad off...sometimes it's just not in the cards for everyone to be able to take them.
Posted 9/25/2011 4:57 PM (GMT 0)
nope i am afraid you'll always have it... but I do agree with nanners!
Posted 9/25/2011 6:08 PM (GMT 0)
If you "don't have Crohn's now" why does your doctor continue to see/treat you?

Maybe it is his terminology. Does he say you are cured? Or is he just (poorly) communicating that you do not have active disease because the portion of your bowels with active disease was removed?

Remission means that the disease is dormant. You should be able to eat what you want, though some folks with crohn's also have other food sensitivities/allergies regardless of whether the disease is active or in remission. Also, depending on when you had the surgery, you may still be limited in diet temporarily to a low residue diet until bowel motility returns.

Last I read, foods are not a trigger to this disease, but certain foods can make symptoms worse when the disease is active.

I would remain on a maintenance med.
Posted 9/25/2011 7:08 PM (GMT 0)
According to the CCFC diet can play a role in IBD as a possible trigger (environmental) and it's not surprising since so many IBDers have issues with certain foods which is why food/diet is not ruled out as one of many possible triggers for IBD. "Trigger" being the key word, not necessarily "cause" of IBD, since the cause is considered to come from within the patient.
Posted 9/25/2011 8:17 PM (GMT 0)
For me Crohn's is almost like becoming an alcoholic. You can abuse alcohol for years before it finally catches up with you and you become an alcoholic. But no matter how long an alcoholic can remain sober (in remission), one drink can regress you right back to alcoholism. So I prefer to maintain a healthy lifestyle and remain alert.

Now that you are in remission you may want to reconsider Remicade. It is a very powerful med for maintenance, perhaps you can discuss with your doctor a milder maintenance med with fewer side effects. Many here take mesalamines, 6MP, or something for maintenance. (PB4 seems to have found a unique method that works for her.) I am not an expert on meds but I am sure the members here can offer advice on what works for them.
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