What do YOU call a flare?

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hspenser
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Date Joined Dec 2005
Total Posts : 544
   Posted 2/5/2009 9:16 PM (GMT -7)   
I have seen and heard the word for years....and I have noticed that some people look at flare as 1 or more bad days.....others seem to define it as a longer period of time and they just think of a bad day as just that...a bad day ....but not a flare.
 
What do you mean when you say flare?
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 2/6/2009 2:50 AM (GMT -7)   

For me a flare is when my stomach hurts really bad, my intestines are making loud noises, I have nausea and generally feel like I have a stomach bug.  Sometimes I have increased bm's with mucous.  This can last from 1-7 days, and then if I watch what I eat and take my meds regularly, I'm usually OK.

But for me the biggest factor for knowing I'm in a flare, is stomach pain and not diarrhea. 

Christina


aquagirl900
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 2/6/2009 4:16 AM (GMT -7)   
For me I have "crohn's days" where I feel like crap. If I'm sick for more than a week I would call that a flare.

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 2/6/2009 4:51 AM (GMT -7)   
If I can't get it under control with predisone within two weeks I call it a flare. For me they usallly last about 6 weeks.

Elzabeth
dx'd with Crohns 1984, I was in remission for 12 years
Bowel Resection surgery 2006, Now weaning off  Predisone after another flare. Started taking my Asacol again.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/6/2009 7:02 AM (GMT -7)   
I am with aquagirl900. I have Crohns days where if I have eaten the wrong thing or had too much stress I will have a bad day or two at the most. To me those are not flares. I consider a flare when it lasts more than a week and I need Pred to get me back to feeling better. JMHO
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 2/6/2009 9:18 AM (GMT -7)   
I agree with the others. I would consider a "flare " as uncomfortable symtoms that last for a week or longer and may need medications to control.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 6 months ago. Now on Remicade and iron. Feeling like a champ!
God Bless. Tony


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 2/6/2009 10:58 AM (GMT -7)   
I call a bad day or two a mini-flare. So far that is all I've had since my resection.

I'm glad this question was asked. I didn't realize that we can just have bad days without it being considered a flare. After 2½ years of this "crap" I'm still learning.
Vicky / 49 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (28) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor, Lisinopril


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/6/2009 12:32 PM (GMT -7)   
You know Vicky ever since I had my last resection I find I have those bad days more often. I can remember before my resections I rarely if ever had those bad days. My remission was so nice back then, I could eat anything I wanted, basically lived as if I didn't have Crohns. Sigggghhhhh, those were the good old days.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 2/6/2009 9:15 PM (GMT -7)   
I agree with the others, I have bad days-seems like alot lately and then when it is so bad that I need prednisone THEN I consider it a flare. I don't know that I ever feel completely good but do have good days. So when it persists badly for a couple weeks and added medicinal action is required to feel better...flare.

Dx CD 2003 but probably had it 10 years prior

Dx Primary Sclerossing Cholangitis 2006

GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05

Currently on 100mg 6mp-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/7/2009 8:03 AM (GMT -7)   

it seems rare when a question asked on here gets the responses expected while at the same time showing a variety of responses.

I also think I see the thread here of many having "crohns" days often but they can be dealt with and flare times are the days most would say they really can't deal with.  (By dealing with I mean work around or get through without affecting your daily routines or work)

My post here is not meant to supress further discusssion or responses....but hopefully to add another dimension to the discussion....and that is to ask/say:  If it is not a flare...and it is, as someone said a "crohns" day.....is that what our lives have become? What is our NORMAL?  as compared to non-crohns people.

I have waffled back and forth the last several years of thinking I am in flare...and I have it under control and have a NEW normal....

Maybe the best way to go forward is to describe our normals....our crohns days and our flares (if you are interested...I am trying to get a handle on the degrees of normal and flares so as to know if I should expect more out of my treatments)

For me a good day would be zero to only a few cramps, less than 5 trips to the john, semi-solid waste, good appetite, able to sleep thru the night,   a crohns day is cramps when I feel the need to go, cramps when I go, 10 to 15 trips to the bathroom, semi solid to full on D, loss of appetite.   A flare is when my crohns days string together for more than 5 straight days and increase the bathroom trips to 20 plus every few days blood shows up.  Recently I have the added joy of severe abdominal extension due to gas...it comes and goes.

I am getting the idea that many of us have really lowered our standard level of "normal" to something that we have just learned to accept.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/7/2009 8:27 AM (GMT -7)   
I am much like you Hspenser, my good days may have some joint pain (that seems an everyday thing), 1-2 stools a day, and generally feeling well. But the bad days, that seemed to become more frequent after my resections, occur generally when I have 1) too much stress or lack of sleep, 2) Ate something I shouldn't have, or 3) all of the others combined. I am still able to work on my bad days most times, but have more bathroom visits, cramps, even worse joint pain, and fatigue.

Now I know its not just a bad day(s) when it continues for more than 1-2 days. When the D increases (5+ or more), nausea, cramps that last more than a week I know then that I need Pred to get it under control.

I didn't see as much problems after my first resection, but definetly after the 2nd. It took me probably a few years to figure out that I was much more sensitive to the wrongs foods, stress etc. I think I have and most of us probably do have some IBS in there too. I also developed anxiety trying to figure out these changes, but have learned to stop it right away with my meds. I now stick fairly strictly to my low residue diet and work hard to get a good nights sleep. I take my maintainence meds religiously too. For the most part I am doing pretty good right now, as I said before my biggest complaints these days seems to be the joints.

I think as you said I have learned to live with my new normal, which is very different from the healthy person. I personally think that if one of my healthy coworkers had to work living with my "normal" days, they would probably be calling in sick all the time. This disease has given me strength thats for sure.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/7/2009 8:44 AM (GMT -7)   
I agree with you hspenser. My only response to your first question really would be simply: miserable.

And there are many days where I am above that but still have mild cramping if I sit a certain way i.e. with bad posture. Or, if I eat something that gives normal people an upset stomach anyway.

And then there are the days with cramping, multiple and/or loose bm's, joint pain, headaches, etc.

If it lasts more than a few days I would say that that is a flare. And if it warrants a higher dose of pred again.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 2/7/2009 9:35 AM (GMT -7)   

I as well agree with hspenser. My normal isnt what it should be. My mom worrys about what I think is normal because I wont go to the doctor. I will just pass it off and say I will be fine. I say the pain is tolerable and the 15 BM's a day is what is normal to me. I know that it isn't ok to think this way sometimes because at some points I am way sicker than I think.

For me normal is up to 15 BM's a day, headaches, low energy, joint pain, irritability, cramping, nausea, acid reflux. It has been 7 yrs since I was diagnosed and I still have yet to feel relief from my symptoms. 3 weeks ago I was 149 lbs and am now down to 138 lbs. I would definitely classify this as a flare, but my normal isn't any better.


Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


MsRockonBelly21
Regular Member


Date Joined Dec 2008
Total Posts : 42
   Posted 2/7/2009 10:47 AM (GMT -7)   
To me having a flare is when the pain is so much I am getting ready to drive over a hour to the ER(I only to the ER where my doctor and charts are located).
Don't judge a book by its movie.
 
In the past I have taken Asacol, 6mp, Prednisone(3x),  Remicade, Flagyl, Cipro, Phenergan, Colazal(think there was others).                       
 
I am on Metoprolol 50 mg for high blood pressure and heart beating too fast. On Citalopram 20 mg for my anxiety and depression. Started taking fish oil capsule 1200 mg for my high cholesterol. On Calcium 600 mg+ D 400 i.u.  pills. On Remicade 1,045 mg 
 
Diagnosed at age 14 in 2001, first started sick getting at age 13, Sept 2000. I am now 21


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/7/2009 8:29 PM (GMT -7)   
aquagirl900 said...
For me I have "crohn's days" where I feel like crap. If I'm sick for more than a week I would call that a flare.


Ditto...

After I hit my first remission, my GI told me to expect 3-5 bad days a month. He was right, but they weren't terrible. Of course, I'm in the midst of an unending flare (started with more frequent "crohn's days" back in Jan 08 and flared completely by Jul 08).
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 2/7/2009 9:14 PM (GMT -7)   
a flare up to me is a severe pain can last for ever as i remember I'm in flare up since july 08. it is really pain that makes you uncomfortable eating, sleeping , working ,and not doing your normal shores. it is stressful and annoying.
Age: 28
Diagnosed with CD JAN, 08.
Meds: Prednisone(40mg), Pentasa (4mg), Hydrocodone, prilosec, Fish oil, Multivitamins untill(01/27)
Surgeries: Right now I'm at the Hospital (Hotel) waiting for my Abscesses to be drained then I will have a Laparoscopic Resection Surgery. I’m very excited.
New med's at the hospital: Flagyl (1500mg/Day), levaquin(500mg/Day),Hydrocortisone(300mg/Day) ,Lovenox(40mg/Day) for clotting, regular insulin, dilaudid as needed (1 mg/4 Hr's)
TPN with lipids at night.
------------------------------------------------------------------------------
Words are, of course, the most powerful drug used by mankind.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 2/8/2009 4:03 PM (GMT -7)   
When I went into remission after I was first diagnosed, I would have a few hours here or a few days there where my bowels were in a spasm-mode. I'd be in the bathroom every couple of hours. Back then, I would have called that a FLARE. However, my GI said he didn't consider that to be a flare...he considered it to be a little bit of IBS acting up (since I have Crohn's Colitis, he believes that since I'm on maintenance drugs, I also deal with IBS issues on occasion).

Then LAST year I got REALLY sick for a full straight 8 months. Awful bowels throughout the day and during the middle of the night (causing sleep depravation); swollen ankles TWICE...so bad I couldn't walk or drive; aching joints and lower back; MASSIVE LETHARGY every single day; low iron levels; quick weight loss (40lbs in 3 months) which meant malnutrition and malabsorbtion. That was the first time I'd been THAT sick. So all of a sudden I knew the difference between what I HAD been calling a flare vs. what I now know to be a flare. Even my GI, seeing all my symptoms called it a FULL-BLOWN FLARE.

So now I call my little few hours/few days bowel issues "SPELLS". I like this morning, I had a really SICK bowel movement. I considered it a SPELL, as within 30 mintues my bowels were feeling better.
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 2/8/2009 5:11 PM (GMT -7)   
I've been in remission (no evidence of inflammation even after a biopsy and no symptoms) for several years. I worry I'm flaring if I feel a symptom that I am sure is CD and it lasts for more than a day. I wouldn't call anything a full flare unless I needed to go to the GI or ER and change up my tx to make it go away.

Good Days: a completely normal person. One or no BMs and no C either. Eat anything (except the stricture is still there so nothing stupid) and feel fine.
Blips (CD days): twinges in the gut or sick after eating, tired, no appetite
Mini-flare: more than one day of being sick after eating, puking up everything for a day, an accident, or short-term combination of these.
Flare: Bowel obstruction, constant pain after eating (leading to no eating), exhaustion, ...

I don't know where to put joint pain. That just appears in winter and stays 'til spring.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

Post Edited (inflamed) : 2/8/2009 5:17:32 PM (GMT-7)


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/8/2009 6:19 PM (GMT -7)   

Thank you to everyone who has responded....this has been very educational for me and hopefylly for others as well.  It shows me that not only do many of react to this disease differently but we also have many different levels of tolerence and acceptability.

By no means should anyone stop responding...I just wanted to interject my thanks for the responses so far.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old

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