how long is remission/flares

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Trsora1
Regular Member


Date Joined Nov 2007
Total Posts : 111
   Posted 6/5/2008 6:18 AM (GMT -7)   
I cant get into remission for long periods of time? Anyone else out their? We are switching up the cocktail of drugs im on and stuff but i cant seem to be in remission for longer than a few months before diaherra and a flare comes back on. Does this happen to everyone? Seems like the flares and your body to recover from the flare last longer than the remission itself. I dont even know if i consider myself in remssion when i have to take so much edication threw the remission and stuff.  The Remission stopped this time 5 days after getting off predisone i started to have soft/diaherra stools again for the last 2 days.  So we will see in this week to come but just curious about anyone remission or flares. 
 
 
Humira, Entocort, Pentasa, multivitamin,  

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/5/2008 6:40 AM (GMT -7)   
Everyone's Crohns is so different that I don't think anyone can give you the answer you are looking for. I am currently in remission. But that doesn't mean that I feel peachy everyday. I still have days where a certain food may make me sick, or too much stress makes me sick. These times are not flares, they are just days that me, a person with Crohns disease, will always have. Our systems are so messed up it doesn't take all that much to upset the apple cart.

Next to the maintenance medications I believe that every patient with Crohns should always take, even when in remission, I think the next most important thing, is watching your diet. Keep a food diary and pay attention to how certain foods affect you. If something upsets your system, stay away from it. I live on a modified low residue diet that works well for "me". Taking "my" medication cocktail works well for "me". I just think each of us has to find what works best for us. Hope that helps a little.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/5/2008 10:12 AM (GMT -7)   
I think Nanners summed that up nicely. Although, I seem to be in the same boat as you. (Barely in remission one month out the next...) It's frustrating. But my job is -- for the time being -- very accomadating. Just keep working with your Doctor to figure out the mix that works for you. The food diary is an excellent way to start figuring out what can upset your gut. If it seems like it's "everything" talk to your doctor about tryting an "elimination diet." to figure out if you've got a sensitivity to certain foods.

Also, just because you're having diarrhea it doesn't mean you're out of remission. You can, if you're like me, also have IBS along with Crohn's. If your Doctor isn't double checking the bowel symptoms you're having with blood work, you should look at getting a different doctor.

"Self Confirmed" flares for me have debilitating joint pain (Arthralgia) in my hips and knees, or clear and obvious signs of obstruction. (Vomitting for hours) The blood work done when I've had those symptoms has shown increased Sed rate, white count and when measured elevated CRP (a direct measure of inflammation). I've also lacked those "peripheral joint" symptoms and had the elevated sed rate and white count.

I hope that helps
-- Jason
Diagnoses? Crohn's in 1983; Kidney Stones in 1997; Reactive Airway Syndrome in 2002; Major Depression and GAD in 2003; Migraines in 2006; ADHD and IBS in 2007.

Current Meds? 6MP; Adderall; Wellbutrin; Zoloft; Albuterol (emergencies only); Fexofenadine; and Epidrin or Imitrex (depends on migraine severity...etc)

Overall: Things are So-So. In other words "It could be worse. It could be raining."


Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 6/5/2008 10:32 AM (GMT -7)   
Nanners,
How did you modify the low residue diet? I'm curius because I've found 'low residue SCD' diet to work for best me...(with some cheating here or there, of course...)

Trsora1
Regular Member


Date Joined Nov 2007
Total Posts : 111
   Posted 6/5/2008 4:22 PM (GMT -7)   

thanks guys i do keep a food diary.  And i watch what i eat very carefully so i m not too concrened with that. Being lactose intolerant and having a bad allergy to glycerin i have to watch and read labels for the rest of my life. I do get my blood checked every 2-3 months but my sed rate or crp never is elevated so dr kinda stopped checking that stuff.  White blood cell count is usually elevated when im going threw something but slightly and my lymph and moncy and stuff is either too high or too low but dr's always blame it on steriods or something else.  Predisone is the drug that always works for me and for some reason my body just loves it.  I always am fine when on it and now they tried entocort to get me off predisone but the last two times i was on entocort didnt work and this time im not going to the bathroom 10-15 times so it is working but not as strong as predisone.  So like the morning so sick and then once i take all my pills give it a few hours then im fine. Some dull pains here and there that come and go.  but just dont know if this is the start of another flare. Just had one around easter.  I dont like the flares to go on for weeks and weeks like to nip it in the butt before it gets out of control because 5 hospital vists last year trying to stay out of there.  But when it gets that bad hospital steriods sound like a piece of cheesecake to me.  Thanks for the advice was just curious to see about anyone elses flares or remissions.  Last flare before the one on easter week was in September and then finally in october got on all the drugs.  Easter i was down to 2mg/1mg of sol medrol so almost off that but then i got the flu for about 12 days and then went right into a flare.   


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 6/5/2008 7:22 PM (GMT -7)   
I used to be like that. at some point in my long, LONG war with our DD, things got better. For a while I had almost no activity except occasional flares of IBD arthritis. Now, every few years I have a Major Flare followed by long remissions. At least partial remissions ( I still get rectal bleeding & a bit of mucus too often. Plus, the big D with food mistakes). But my point is, most of us DO get better in time. Even if is a long, hard slog..

Sincerely,
Matthew

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/5/2008 7:51 PM (GMT -7)   
Trsora1 said...
I cant get into remission for long periods of time? Anyone else out their? We are switching up the cocktail of drugs im on and stuff but i cant seem to be in remission for longer than a few months before diaherra and a flare comes back on. Does this happen to everyone? Seems like the flares and your body to recover from the flare last longer than the remission itself. I dont even know if i consider myself in remssion when i have to take so much edication threw the remission and stuff.  The Remission stopped this time 5 days after getting off predisone i started to have soft/diaherra stools again for the last 2 days.  So we will see in this week to come but just curious about anyone remission or flares. 
 
 
Humira, Entocort, Pentasa, multivitamin,  
 
 
Wow I havent been in remission for over 10 years, a few months would be a blessing for me.  I have  had crohns with symptoms 30 years.  I am on Humira and Cipro once a day.  Stress can bring about flares, depends on your age, lifestyle and fitness as well, so I was told. I find now that I am older the obstruction has slowed down been at least 5 years.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/6/2008 7:09 AM (GMT -7)   
Eddie when I say a modified low res diet, I mean I don't follow the low res diet exactly. I eat what "I" can eat. Plus I am a picky eater, so its a little harder for me to finds things to eat. Thats what I mean by modified. Nothing big.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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