when disease isn't active

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kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 2/22/2009 3:19 AM (GMT -7)   
hey, i was just wondering does anyone still have symptoms even when their crohn's is not active? i find i still get the faitgue and low energy and mouth sores, stomach complaints. is it usual to still have those kind of symptoms even when you are in remission? i have mild crohn's but i still seem to feel like crap a lot of the time! also i'm not anaemic but my iron is towards the low end. is that usually the way with crohn's?

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 2/22/2009 6:26 AM (GMT -7)   
kiki, who is telling you that the crohn's is in remission? Sounds like you may still be flaring to some degree. Anemia is very common in those with active crohn's as well as the other symptoms you described. If your GI is telling you your in remission, you might want to get a second opinion. Best wishes.


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


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 2/22/2009 8:33 AM (GMT -7)   
Just because you aren't haveing major symptoms doesn't mean that your Crohn's isn't active. Are you on any meds?

Elizabeth
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.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 2/22/2009 10:51 AM (GMT -7)   
kiki, from what you are describing, it sounds like you are flaring. Like others have said you don't need to have major symptoms to be in a flare. I would think you would want to treat the milder symptoms before they become severe. You are more likely to get back into remission if you don't wait.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


CDfreesince93
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/7/2009 5:06 PM (GMT -7)   
I am new to this forum and just came across this thread. I have been in remission for 15 years - confirmed by routine colonoscopies and tests - and I still have symptoms. They rage from occasional D to chronic joint pain, fatigue, gas, cramping, among others. I have just chalked this up as normal for me. I have also had eye problems (iritis), but all along the disease stays dormant.

Hope that helps - your not crazy. Just make sure you keep up with routine exams and tests so you can catch a flare early, when, and if, it does occur.

Kim
41, diagnosed 1992 (25), resection 1993, remission for 16 years, no current meds


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2009 6:54 PM (GMT -7)   
I too am in remission with mild Crohns but still have some problems just as cdfreesince93 said. Sometimes it is because of something I have eaten that will cause problems. I personally live on a low residue diet and that seems to help some. But my joints are always in an uproar, and my stomach will have its bad days, and I too am on the low side for my Iron. The anemia is because of my diet though. Hope that helps.
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"*

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 3/7/2009 7:42 PM (GMT -7)   
I consider remission to mean no pain, for myself.  I have ALWAYS had D. The one and only time I had normal poops is when I was on 100mg of prednisone + the first 4 shots of humira, then 3 weeks later, back to constant D. I dont know if you would even call them normal, they were so freakin hard and big I felt like I was pushin a baby out of my butt! It could be though that we dont stretch those muscles hardly as much as a normal person would, everything just slides on out! I go through phases where I will be really tired for a long time, then all of sudden Im full of energy and always going.  I honestly dont believe that I will ever been in true complete remission with normal poop, energy, ect ect.  But ever since my resection in sept I've felt like absolute crap constantly, plus the adrenal fatigue from the prednisone.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly)
 

kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 3/7/2009 7:52 PM (GMT -7)   
yeh it's hard to deal with all the ups and downs isnt it?! at the moment i havent had D for almsot 3 months so thats good. but on the other hand it's gone the opposite way and i'm finding myself straining for a BM or it will be painful then come out and be larger in volume, or i have to go back frequently to the toilet only to find that i can only get a little bit out! it seems like my BMS change from day to day! thats why i keep telling myself maybe it is IBS and not crohn's? but my GI and doctor are 99.9% convinced otherwise. they said they diagnose someone with IBS when they really dont know what is going on with them. My liver enzymes were slightly elevated again for the 3rd time and when i was first getting diagnosed i was high on the inflammation blood test. But since starting salofalk and doubling the dosage things have settled down more. So i then i start to think maybe it isnt IBS if the medication isn helping?? I dont know maybe i am in denial about it all! i know i can take years for crohn's to show itself internally!

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/7/2009 10:06 PM (GMT -7)   
The last two days I have been extremely tire,fatigued and I don't no why. I haven't been doing anything but sitting on my butt. I did just get a B12 injection last Wed. I wonder if that had anything to do with it. I just feel like I could sleep all day long.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 3/8/2009 11:16 AM (GMT -7)   
Yeah... I believe I'm in remission now... and I still get the occasional tummy pain and bathroom trouble (relating to constipation)... And the joint pain so far hasn't let up... it has gotten a little better than it was, though...

I guess its all how you interpret it...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/9/2009 11:34 AM (GMT -7)   
Kiki87 I have alot probs with constipation myself. You might want to ask your doc if its okay for you to take stool softners. I have to take them every night or I will get backed up bad. Just a thought!
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"*
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