What's it like to not be in a flare?

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basil
Regular Member


Date Joined Oct 2008
Total Posts : 78
   Posted 10/26/2008 8:43 AM (GMT -7)   
Since I was diagnosed with Crohn's I have been in a flare. When the flare (hopefully soon!) stops, what happens? Will I feel just like I did before my symptoms started? Or do some symptoms tend to stick around even when you're not in a flare? Is it safe to eat more adventurous foods when not in an active flare? I still have so much to learn about my Crohn's! thanks for any responses!

Basil

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/26/2008 9:24 AM (GMT -7)   
When I was first diagnosed I had symptoms for 6 weeks. Then it all went away for 9 months... as if nothing ever happened. I was back to normal. Since then, for the past 4.5 years, I've only had flares controlled by meds. I've not gone into remission naturally.  But the one time it happened for me, it was as if I never had Crohn's. 


--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 STOPPED Tysabri 10/3/08,
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.
--single mom to 11-yr-old girl


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 10/26/2008 9:57 AM (GMT -7)   
It's heaven. I had been in one long unremitting flare for 15 years. Now I am in remission (on Humira) and I think I am back to being a normal person again. The only thing I have now is loud rumbling from my intestines at times. Nothing else significant at all. Oh, and I eat anything I want!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/26/2008 11:05 AM (GMT -7)   
Hi I have no intestinal pain and by choice stick to a low roughage diet.I am not running to the bathroom constantly although I still find myself tired but am doing a little better since I have taken care of some hemroid problems so sleeping better these last two days. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 10/26/2008 11:16 AM (GMT -7)   
Being in remission is so nice!! I have Crohn's very mild compared to most. I haven't had a bad flare since my first
one which was really bad 8 years ago. I was a normal human being. The end of April this year I went into another flare
and it wasn't as bad as the first, but bad enough. I'm on Methotrexate now and it's been doing really good. It was rough
when I first started on it but now I only feel really tired like the day after my injection. I am still watching what I eat.
When I'm in remission I pretty much eat anything and everything. I do my best to stay away from a lot of sugar too.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone-  I am off of it!!   YAAHH!!! :-)   
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg every day
                           Wellbutrin twice a day
No Surgeries
 


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 10/26/2008 12:07 PM (GMT -7)   
Welcome, Basil.

First let me say that I have fought surgery and at some point will probably succumb to it. That said, my first flare was horrible, but I thought it was just a bad case of intestinal virus. Went to an ER and ended up signing a release form because they had no idea and I could tell were running out of ideas. The pain subsided and I went back to normal after about five - six days. Three or so months later I landed at another ER, this time they admitted me, diagnosed me with crohn's and gave meds to manage it (Asacal and Prenisone). Since, I have never fully hit remission and have been in and out of the ER multiple times. It's been a year and a half now and it's good day/bad day for me... sometimes bad weeks where I will be off food completely for up to seven days. I am on and off Prednisone, as that seems to be the only thing that reduces the inflammation. Note: I have only been prescribed Asacal and Pentasa. I am considered mild crohn's, as all my scans, colonoscopy, and so on and so on... show only inflammation and fluid retention. Both GI doctors I have seen for this want me to have surgery and will not allow me the opportunity to explore any other medication options without it. {{sigh}}. Oh, and one last, I have diverticulum (protruding spots in my small intestine) which prevent a pill cam test... and any foods with seeds.

This DD (darn disease) is different for most. For me, endless pain(P), nausea(N), and diarrhea(D) 2 - 10 times a day. I am grateful that I have a PCP (primary care physician) that really cares for me who will treat my symptoms PND. PND is now the "normal" for me. I hope that you, like many here, will hit that blissful place known as remission... one day I hope to be there as well.

Hope I didn't throw a wrench in your hopes. :)

Warm regards,

-Leslie

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/26/2008 12:15 PM (GMT -7)   
I don't know. When you find the answer, let me know !!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/26/2008 6:23 PM (GMT -7)   
Yeh, Im with you Vicky, let me know too.
Jo

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 10/26/2008 6:52 PM (GMT -7)   
Honestly, I am still confused as to what a flare is and what just plain old bad days are. Unfortunately, this past year, I have learned that unless I am on oral prednisone, my symptoms all return. Does that mean I am still in a flare or I start to flare when I get off the pred? I have no idea...

Even being on the pred, I still have symptoms at times. Strange! Anyone else feel that way?

basil
Regular Member


Date Joined Oct 2008
Total Posts : 78
   Posted 10/26/2008 8:39 PM (GMT -7)   
indigosunrise, i'm also kind of confused about what a flare exactly is. I started bleeding in June, and it hasn't stopped yet. I guess that means I've been in a flare for about 5 months, but from about June to September I didn't have any other symptoms, except occasional stomach aches. Can flares be really short lived for some-- like just a couple of bad days and then back in remission?

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/26/2008 9:08 PM (GMT -7)   
After I started following the SCD, I have spent more time in remission than not. Most times I am well, but I have more belly symptoms now when I do flare. Now I am trying not to slip totally out of remission, I'm having quite a bit of arthritis and muscle pain, and I'm to exhausted to want to move. I know I need to go back to a strict diet, but I don't have the evergy. I am going to get a B-12 shot, to see if I can pull my head together well enough to go back to the Intro diet, and pray it works for me again.


Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 10/27/2008 2:44 AM (GMT -7)   
well not having ever not been sick i cnat help ya.. however, i would surmise that a person so inclined to be in a sort of remission would have more energy, lots less bathroom time maybe with no diarhea, for a period of time. maybe no night sweats, blood or heavy mucus . maybe be able to not take any meds for an extended period etc... kinda like a normal person . i personally have not had a epsisode like this since diagnosis in 1984. so yes , if you find out let me know.
randynoguts 



     http://www.geocities.com/randynogutsweb/

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