Explaining flares - length and symptoms

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What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 3/11/2010 6:33 AM (GMT -7)   
Hello all. I thought since we are all so much different in the way we are treated and the way our disease treats us, that it would be interesting to see the differences between us when we flare. When I get a flare, it normally just starts with pain in stomach. I feel that when I lay down after I eat, the pain gets worse. I literally curl into a ball in bed at points when I'm flaring as I know there really isn't much I can do at that point other than deal with the pain until meds kick in. Also, I find my rear-end becomes inflamed (especially in the area that I had my fistula) and sometimes I have blood. I use the restroom maybe 3 times a day (give or take) when I'm flaring, but for the most part; it's not D when I go. I also find that at the start of a flare, I feel like I'm getting the flu. Nausea, chills/fever, feeling weak. I even notice that I get night-sweats sometimes (guessing that pertains to the fever). When I get a flare, they normally last 1-2 weeks and then subside. Of course in that amount of time I be sure to eat well and eat a little less than I normally do as to give my insides some time to relax.

Just figured I'd share as I'm interested in hearing how a standard flare of mine would be so different from every one of yours.

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/11/2010 6:57 AM (GMT -7)   
I've only had 4 flares but they have been severe, the last few came on QUICK. The last one I was fine, got a plane fell asleep and woke up in screaming agony had to get an emergency flight back less than 48 hours later and by that time I was vomiting every half hour and was in so much constant pain as well as the contraction type pains I would literally be screaming and crying, my CRP went to 180 from nothing during this time. It took 8 days to be booked in for my remicade (I have it as emergency treatment) during those 8 days I lost over a stone in weight and had to have pethidine injections and morphine and it still didn't completely get rid of the pain, even water would make me vomit. When I went in for the remicade I was hypothermic and my blood pressure less than 80 systolic, they said this was because even in a short amount of time my body was shutting down essential functions and the next stage would have been my organs. Then I had the remicade and two days later everything was settling down - because of the severity of that flare my insides felt sore for a while but my GI said that after the inflammation goes it can still take a while for the wounds to heal I ended up having to have second remicade even though I was much better as there was just so much going on it needed more to completely get me into remission.

Fortunately my flares tend to be short as they know what treatment works but they are really quite severe, it'll usually take a month or two after to get my energy and strength back to what it was. My Crohn's is classed as severe but remissive which apparently isn't that common to have severe Crohn's be remissive so I'm quite lucky and have brilliant doctors who do their best to help me.
 
 


Jamci
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 3/11/2010 8:19 AM (GMT -7)   
I don't really know what a flare is. I've had pain since January 09. It ranges between 2 and 5 on a scale of 10. Being treated for Crohn's disease but dr doesn't really know. I've had one month since then with little or no pain with bulky stools. Other than that it's business as usual with pain and alternating bulky or semi loose usually once a day.

I guess I'm constantly in a small flare unless it's not Crohn's. If that's the case then I don't know what the hell is wrong with me....:)
Daily Multi Vitamin, B Complex, B12 sublingual, Probiotics, Fish Oil, Protonix (GERD), Wellbutrin (Anxiety). Apriso (Crohn's), Trilipix (cholesterol), Welchol (cholesterol), Cardizem (blood pressure)


What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 3/11/2010 9:11 AM (GMT -7)   
Jamci; you could actually be having 1 long flare at the moment. Crohns is so tough to treat/give advice on because EVERYBODY's case is different. If I'm not having a flare, I normally have no pain and consider myself in complete remission. Of course, I get the occasional stomach-ache if I eat something I shouldn't have, but for the most part; I'm okay more often than not. If you aren't feeling so hot, it could be a flare.

I see you are taking probiotics.. I don't have a "severe" case of Crohns (even though the disease is bad no matter how sever your case may be) and I tried taking probiotics and they actually made me feel terrible. Very gassy, and bloating with stomach cramps... I would never say stop taking them as I'm not a doctor, but could you attribute your pain to that at all?

Jamci
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 3/11/2010 10:07 AM (GMT -7)   
I've thought about that but I was having pain before taking probiotics. There was a month of no pain after starting probiotics, but I changed some eating habits also so I don't know what contributed to that.

I've tried keeping the same eating habits but now am having acid reflux so I can't eat some of the things that may have contributed to that month of no pain......so I don't know what to think.

My pains not sever either and if it is crohn's then it is a mild case or so the doctor says.
Daily Multi Vitamin, B Complex, B12 sublingual, Probiotics, Fish Oil, Protonix (GERD), Wellbutrin (Anxiety). Apriso (Crohn's), Trilipix (cholesterol), Welchol (cholesterol), Cardizem (blood pressure)


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8570
   Posted 3/11/2010 10:53 AM (GMT -7)   
I don't really get flare ups in the sense that, say, lilchronieUK up above gets them. For the last 11 years I've had mild but active disease which has slowly got worse. No remissions but no extremely severe flare ups either. Within that framework, some days will still be worse than other days, and overall the last five years has been much worse than the preceding six years.

A bad day for me at the moment consists of bad adominal pains, a fever in the evening, and, depending on which way the wind blows, increased diarrhoea or constipation and bloating. The constipation used to be a very rare thing; now it has become commonplace. Yesterday I had a bad day and two bad bouts of diarrhoea, but a year ago a flare up would've led to diarrhoea 10x a day - my symptoms have changed in the last few months.

When I'm not having a bad day then abdominal pains are mild/non-existent, fever is lacking, and there is some degree of constipation/diarrhoea. (I never, ever have normal stools - what emerges is liquid 97% of the time, even if I'm constipated and have lost all urge to go. The remainder will be pencil-thin bits.) I tend to always feel a sense of mild malaise; never feel 100% healthy.

Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/11/2010 11:51 AM (GMT -7)   
Jamci said...
I don't really know what a flare is. I've had pain since January 09. It ranges between 2 and 5 on a scale of 10. Being treated for Crohn's disease but dr doesn't really know. I've had one month since then with little or no pain with bulky stools. Other than that it's business as usual with pain and alternating bulky or semi loose usually once a day.

I guess I'm constantly in a small flare unless it's not Crohn's. If that's the case then I don't know what the hell is wrong with me....:)

 

 

I'm with you, not SURE what a flare is, but I'm newly dxg'd, but my digestion just has gone downhill and downhill and then a reaction to flagyl and now I eat blandly and I still get pains 2 to 5 on the scale and I have to curl up or anxiety, or feelings of having to go to the bathroom and diarrhea, anti-diarrhea pills help me a bit with cramping and going, and I have nausea on and off. Nights and mornings seem to be the worst.

But I am slowly feeling better than I was two weeks ago. I still don't know what I can or cannot eat and have fears of going into the agony of curling up on a ball on the couch all night and shaking. I'm trying heated pads on my stomach. It feels weird that I'll have to watch every bite in my mouth forever and take it easy all the time, I'm so new to it all.

BTW is the Wellbutrin helping for the anxiety. During this big flare up that happened, I got anxiety/depression and I was fine before that so I asked for Wellbutrin (which has helped with thyroid stuff in the past). But this time, it's making me zombie spacing, sort of low on emotions, and insomnia so I don't think I can take it.


-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
Hypothyroid, newly dx'd Crohn's, Gerd. I love to look for natural ways to heal first, conventional ways second and keep my faith.


Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/11/2010 11:54 AM (GMT -7)   
What A Life said...
Jamci; you could actually be having 1 long flare at the moment. Crohns is so tough to treat/give advice on because EVERYBODY's case is different. If I'm not having a flare, I normally have no pain and consider myself in complete remission. Of course, I get the occasional stomach-ache if I eat something I shouldn't have, but for the most part; I'm okay more often than not. If you aren't feeling so hot, it could be a flare.

I see you are taking probiotics.. I don't have a "severe" case of Crohns (even though the disease is bad no matter how sever your case may be) and I tried taking probiotics and they actually made me feel terrible. Very gassy, and bloating with stomach cramps... I would never say stop taking them as I'm not a doctor, but could you attribute your pain to that at all?
 
 
Hmmm this is something to think about. I always take different probiotics, I don't know if i get relief from them or not. I hope they're not making my cramping worse. I want to be in remission!

-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
Hypothyroid, newly dx'd Crohn's, Gerd. I love to look for natural ways to heal first, conventional ways second and keep my faith.


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 3/11/2010 7:45 PM (GMT -7)   
Jamci- I'm the same way. The doctors aren't sure if I have Crohn's either. I've been in a "flare" for about 2 years if this is Crohn's.

If I feel horrible, my fever is about 101-102, all bowel movements are completely liquid with blood and mucus, vomiting... and I have those bad contraction-like stomach pains that make you want to curl up and die....this disease has taught me what a 10 on the pain scale is like.
Usually my fever is 99-100 degrees...before I was sick my temps always ran between 97-98. I almost always have rashes and mild to moderate abdominal pain, blood in my stools about half the time...joint pain...all that fun stuff.
What sucks the most is that nearly all Crohn's meds make me feel WORSE. I have yet to find one that works. Sigh. SCD seems to be helping though.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Pentasa 1 gm/4x daily; Entocort 9mg


Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/11/2010 8:29 PM (GMT -7)   
imissicecream said...
Jamci- I'm the same way. The doctors aren't sure if I have Crohn's either. I've been in a "flare" for about 2 years if this is Crohn's.

If I feel horrible, my fever is about 101-102, all bowel movements are completely liquid with blood and mucus, vomiting... and I have those bad contraction-like stomach pains that make you want to curl up and die....this disease has taught me what a 10 on the pain scale is like.
Usually my fever is 99-100 degrees...before I was sick my temps always ran between 97-98. I almost always have rashes and mild to moderate abdominal pain, blood in my stools about half the time...joint pain...all that fun stuff.
What sucks the most is that nearly all Crohn's meds make me feel WORSE. I have yet to find one that works. Sigh. SCD
seems to be helping though.

 

 

hang in there! Find new doctors if you're not getting answers. My aunt had Crohn's real bad and she goes through stuff, but has been pretty good for the most part the past few years, there is hope. I felt hopeless w/my thyroid back in the day and struggled for years, and wished I had my years back, but then it got better and to the point I forgot (and forget now) that I have thyroid problems. Yes, it comes up again and I stick it in the bud to stop it from going south before it happens as best I can.


-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
Hypothyroid, newly dx'd Crohn's, Gerd. I love to look for natural ways to heal first, conventional ways second and keep my faith.


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/12/2010 3:29 AM (GMT -7)   
I have to say I've often thought that way I get Crohn's flares (for now) I'm actually lucky, sure its extreme BUT I get long periods of pretty much total relief. I've always really felt for those who have to suffer on a daily basis - mild, moderate, severe, whatever - its still suffering. I feel very blessed for the long periods of calm I get between flare ups. I just pray that my current meds system keeps working the way it is. I was facing an ostomy when literally at the eleventh hour the hospital got a budget for remicade and decided to try a dose on me to see if it would help - that one dose knocked me into remission for 2 years and got me my life back. There are now so many more drugs available than when I was first diagnosed and more new drugs are on the horizon which will hopefully finally bring relief to many and is a comfort to me to know that now there are so many more options to try before surgery has to be an option.
 
 

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