When you say, "I've been sick" or "I don't feel good"....

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Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/7/2008 4:02 PM (GMT -7)   
So when you say to people in your life (including Crohnies here on the board!) that you don't feel good today or that you've been sick lately...what exactly does that mean FOR YOU individually?
 
I know it's different for everyone since we all have different forms of Crohn's, different stages of Crohn's and just different symptoms of Crohn's.  I guess I'm just curious to know a little bit about how everyone "flares". 
 
And when you DO go through a flare period, do you always go see your GI or do you simply acknowledge that you're flaring and deal with it for a certain period of time?  If you do simply acknowledge it as a flare, how long do you wait until you go see your GI for new answers?
 
For me, flaring means:
 
1) I've had loose BM's/D that make me sick to my stomach - usually 5-15 times a day
 
2) I've had a "spastic colon feeling" that day, which constantly makes me feel like I need to go to the bathroom
 
3) My bowels are gasy/crampy/icky/yucky feeling which drags me down physically & emotionally
 
4) I'm massively lethargic
 
5) My bowels have been waking me up several times in the middle of the night with loose BM's/D, exhausting me for the day ahead
 
6) Rapid weight loss in a short period of time which makes me feel weak and puny
 
7) Immediate cramping or loose BM's/D right after/during eating
 
8) Badly swollen ankles
 
9) Muscle and joint pain...all over body aches
 
10) Mouth sores
 
 
So what about YOU???
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/7/2008 4:49 PM (GMT -7)   
My bad flares are more like what you described. I never let that go more than about 10 days before seeing my GI. But I have alot of more mini flares per se than big ones with my Crohns. My mini flares are usually bad nausea and vomiting, no appetite, very lethargic, sometimes D. They usually last about 3-4 days.

There usually is a cause I ate something bad or for my recent bout I am dealing with was caused by pain meds I took after my recent knee surgery. Tore my guts up BAD!!!! I seem to keep having some lingerly nausea in the a.m. and am actually getting a little concerned now as its being going on for a week already. I had to get my knee surgery disability leave extended another week because I have been so sick and unable to do my Physical Therapy. Hope thats 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.


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/7/2008 5:00 PM (GMT -7)   
Until you asked I don't think I ever gave this a lot of thought but I never say I'm sick when I am flaring. I might say I am hurting more than usual or something.
I'm sick means I have a respritory infection or something unrelated.
Flaring would be I am significantly worse than usual.
I never make unscheduled appointments with my doctor which I think drives her crazy. As I leave the office she has me set up my next appt. That is when I go see her again regardless of how I am feeling.
She is now telling her to call her under certain circumstances.
Sj

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/7/2008 5:04 PM (GMT -7)   
Hi I have to say that I when I had the blockage things were bad for me Pain, gurgling, not eating , neausea, big time D, I know I'am sick when I cain't do housework. Glad to say I am feeling better lately except for one eye.lol gail

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/7/2008 6:19 PM (GMT -7)   
I usually ride out my flares until I'm truly sicker than a dog. Bad I know. But I figure what can they do?? I've been sick for over 3 months, I consider that sick. Other times when my crohn's is acting up, I consider it a flare, knowing that it will get better soon. I try not to overuse my doctor, sometime to my own detriment. I usually don't go into the GI, unless it's my regular appointment.

elroque
Regular Member


Date Joined Apr 2008
Total Posts : 38
   Posted 4/7/2008 7:02 PM (GMT -7)   

Yes, my syptoms are pretty much lie yours except the joint/body pain is all over and I totally swell up all over. I usually try to ride it out for a max of three days but by that time I am just so out of it due to the lethargy, dehydration with the diarrhea that I call the Dr. before I have to rush to the ER. That is soooo not fun.

Sadly since being diagnosed I have yet to have a series of regular good days so when someone asks me how I feel, I could honestly reply I feel sick and not too hot but what is that going to solve?


Rock
 
Love many, trust few, but always paddle your own canoe....


sunny017
Regular Member


Date Joined Apr 2008
Total Posts : 26
   Posted 4/8/2008 4:49 AM (GMT -7)   
Mine are like yours as well, except the massive weight loss. I have larger than normal pants for when I am not feeling well because the bloating is very bad. Fortunately, I have more good than bad days. It is usually something that triggers the Crohn's and I don't realize it until I look back. Like antibiotics for a sinus infection etc.

I also do not go to the GI until necessary. I have also recently restarted my 6MP/Pentasa because I had a stomach virus and couldn't keep them down. After I was better, for some dumb reason I became stubborn about taking 10 pills a day. I know the only one I hurt is myself when I do it. Well, to say the least the Dr. wasn't the friendliest about it! I am fortunate that entocort/6MP/Pentasa have helped.

I just want to, being new here and reading the past posts. You could not find I friendlier place for information. It is so nice to see people being so supportive and friendly to others. I for one will keep coming back.

Wishing everyone a day where they can just enjoy the sun for awhile and have no other worries.

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/8/2008 4:49 AM (GMT -7)   
Morning, Kitt.

Flare = Nausea (sometimes vomiting), the Big D (3 - 15 times a day depending & a very raw rear side :)!), knife-like, stabbing pain in the same area of my small intestine, feverish, very tired and weak, 5 - 12 pounds dropped over a course of a week to two weeks. My guts swell up real bad when in full flare up. Nothing can be consumed but liquids.
NOTE: The pain never fully ceases. I have been considering surgery for the past six months because I don't know how much longer I can go on like this... BUT I don't want to undergo removal of small intestine to turn around and have it come back soon... very frightening to me. :(

Length = anywhere from two weeks to a month

Doctor = I go as long as possible before I go to the doctor. If I am hitting 10 on the pain scale and this lasts over three days I end up in the ER to make sure my white blood cell count isn't off the charts and get IV fluids and meds.

As I have posted in the past, my boss is a real jerk so I still go into work each and every day, though some days I can barely walk.

Because nobody but others with chronic disease like this understands, I usually tell folks I am a little under the weather and try to muster up a smile.

Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 4/8/2008 9:08 AM (GMT -7)   
Okay, I'm the one with strange symptoms.  I'm still trying to figure it all out.  It took a year to find out what my normal is and another 6 months to realize, I don't have a normal.  Each day is different.  Constipation for a couple of days. then multiple butt pee 5-10 times a day for a day or two.  Then normal bm's.  Achy joints some days. Bloating others. One thing that drives me crazy is that I don't really ever know when I'm flareing.  Fatigue comes and go's.  I don't lose weight with flares.  Never had the bleeding issue.
 
But the thing that concerns me is that I have fistulizing Crohn's so I constantly worry about what is going on inside of me.  Last fistula was to the bladder which made it necessary to have emergency surgery and resection.  It's when I found out that I even had Crohn's
 
The last few days I've been running a low grade fever so I'm figuring that I'm flaring but as long as I can continue to get my butt to work, or nothing else shows up I'm not calling my GI.  I do have an appointment with my PCP next week and I'll check out what my blood work has to show.  As far as I know, the only thing out of wack prior to the CD discovery was that my platelets were way too high.  I think I'm going with that as an indication of disease activity.
Vicky / 48 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 (27) 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


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/8/2008 9:50 AM (GMT -7)   
This is very interesting...moreso because even though some of us have differing symptoms, we can all agree that we know how the other feels for the most part, having a chronic illness. Sometimes I feel very alone in that aspect as I'm surrounded by people 20 years younger to 20+ years older who are healthy as horses and DON'T understand how I can feel bad for a long stretch of time...lonely until I come on THIS site. YAY for HW!
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/8/2008 11:30 AM (GMT -7)   
Kitt -
 
You sure got that right:  People do NOT understand chronic illness at ALL when they are healthy.  Because of the isolation this brings, stress and depression often follow for many... which brings about worsening of symptoms.
 
HW (as I have said before and will probably always say) has been my only source of comfort and information throughout my dealings with this wonderful illness. 
 
Has anyone looked at how many posts the CD forum has compared to all the others?!!  WOW  yeah I think that speaks volumes to the kind of support that everyone brings to one another.  Good folks here... mighty good folks.  I am finding myself logging on now here and there at work for comfort.  :-)
 
... now if only they could find a cure!!!!
 
 
-Leslie
 

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/8/2008 11:33 AM (GMT -7)   

one more thing that I just noticed after my post... I am now a regular member!!

WHEW HOOOOOO!!  I feel all warm and fuzzy on the inside - lol (Okay - so I am a dork tongue )

 


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/8/2008 12:31 PM (GMT -7)   
Texan, I HAVE noticed that about the CD board!  We have such great support here...with people willing to share the most intimate stories, which is SO helpful.  I posted a question on the Breast Cancer board for my aunt recently and got 2 responses over a month's period of time.  And it wasn't that people were reading and not responding, it was like the top post for weeks.  Just not a lot of people on that particular board.  Very quiet.  
 
I think one reason there is so much support for us Crohnies on HW is because in general, MOST people just don't talk about BOWEL MOVEMENTS in open conversation!  It's very taboo.  Even in my office when one of the gals has a child that gets sick...and they come to work and tell about it the next day, they will say out loud that the child threw up, dry heaved and vomited all over the place but then they will whisper that he also had *shhhh*  DIARRHEA  *shhhh* !!!!!
 
Diarrhea and gas and intestinal cramping just isn't discussed!!! So it's great to come on here and be able to tell people what your bowel movement LOOKED like and find out what everyone's opinion is on it!!! Seriously...can it GET better than that?  You can't get that kind of support from any GI.... tongue
 
Congrats, too Texan, on becoming a regular member...I wonder if there is some OTHER term they could use for that here on the Crohnies  board?!?  I mean, come on...REGULAR?!  I would venture to guess that MOST of us "regular members" are RARELY regular...if you know what I mean. yeah
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


nsgrimm
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 4/8/2008 3:59 PM (GMT -7)   
Almost exactly what you posted, major abdominal pain and cramps, tired, very tired.  I get migranes as well though =/

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/8/2008 6:26 PM (GMT -7)   
I'd just say "I'm starting a Flare" to anyone who has to know, but that includes very few people..

Matthew

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 4/8/2008 8:05 PM (GMT -7)   
Symptoms for me:

- extreme exhaustion
- mouth and throat sores so painful I can hardly talk
- achy painful joints
- extreme bouts of pain that make me curl into a fetal position and gives me chill bumps all over my body
- fever
- extreme gas that'll kill a horse
- gurgling that gets me stares in public =)
- sores that show up in my vaginal area that make it hard to sit and walk
- lose the ability to eat almost anything, so I lose color and drop weight quickly
- have acute blockages if I eat that make me end up puking and in pain

The last time I flared, I ignored it and it landed me in the hospital for 2 weeks. When I flare, I flare good evidently and can't pull myself out of it. So, now I call the GI. Last time I started to show symptoms, I called him immediately and he had me do an additional Humira dose and add on Prednisone and things calmed back down.

My flares are directly related to my stress levels so I can usually spot one coming.
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