Crohn's activity w/o symptoms?

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AlwaysRosie
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Date Joined Jan 2005
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   Posted 4/24/2008 10:01 AM (GMT -7)   
Does Crohn's generally cause symptoms . . . so I would know it is active?

Or does it sometimes do damage w/o our knowledge?

If it can act w/o symptoms . . . is this common?

Also . . . I'm newly dx'd and my GI wants me to go on Entocort. I know this might sound ignorant . . . but I'm trying to decide if I should start right away or wait and see for a while how things go. I'm just so afraid of the cumulative side affects and I don't want to add a med if it isn't absolutely necessary. I WAS taking 9 different rx meds at one point (for connective tissue disease) and now have it down to two. It seems that when I add a third or more meds, then I have issues with blood pressure, and at one point high glucose readings. Things are normal with both right now w/o meds.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

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chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/24/2008 12:57 PM (GMT -7)   
Yes, crohns can cause damage without symptoms.

I would be more afraid of the cumulative effects of leaving the crohns untreated....not a good idea at all! Things can go down hill really fast.

Homeboy
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Date Joined Dec 2005
Total Posts : 637
   Posted 4/24/2008 1:22 PM (GMT -7)   
I know when it's active, but it rarely will show up with tests.

My white blood cell count is one indicator for me, as far as having something on paper, and my g.i. will mail me the results if I can't stick around and wait for them during my visit.

When I get my WBC down to 5,000 or 6,000 I am feeling great.

I do get skin and yeast infections with my WBC count at that level, have one now and loving it, since my CD disappers during that time.

If only they would stick around longer...

Take Care
CD dx @ 13 (1987)
Prednisone 15mg every other day
Imuran 100mg day
Celexa 20mg day
Pain Meds
Vitamins + B12 Injections Once Per Week


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 4/24/2008 1:35 PM (GMT -7)   
I'm more familiar with Prednisone than Entocort, but as a sterroid, isn't that generally used to bring down acute inflammation?  If that's the case, symptoms or not it needs to be taken care of.  If the doc wants to use it as a maintenance med, I'd ask more questions.

Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 4/24/2008 1:37 PM (GMT -7)   
I once enjoyed a 20 year remission where I barely even thought of Crohns and was on no meds at all. It ended abrubtly with a emergency resection due to a complete obstruction. So while I was living my life during that 20 years the Crohns was still in there ticking away and doing its damage. Hope that helps.
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.


texasmom
New Member


Date Joined Mar 2008
Total Posts : 9
   Posted 4/24/2008 2:43 PM (GMT -7)   
I was diagnosed 25 yrs ago, had surgery and never had to be on meds until this past February.  I have been taking entocort since along with Pentasa and I haven't had any side effects from either. In fact some of my nagging problems have improved greatly. But I am still with stomach cramps. I would try the entocort.
 
Hope all goes well for you,
Texas mom

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 6:21 PM (GMT -7)   
CrohnieMomx2, Homeboy, Bektold, Nanners, Texasmom

Thanks SO much for your helpful comments. I really need to build a positive attitude toward the new med and you are all a great help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

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CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/24/2008 6:26 PM (GMT -7)   
Oh, yeah. Crohn's can be busily perking away w/no symptoms. Ask me. I sure do know. It took me awhile to convince my gastro that diddling around doing nothing because when I did have symptoms they were so minor I had "no symptoms" according to that fr**ing CDAI. It took even longer to convince her that "I" was NOT satisfied w/symptomatic remission. And "I'm" the important one on this team.
 
Even some researchers are smartening up and admitting that "symptomatic remission" isn't good enough and that they must aim for total remission. Duh! I always thought that total remission should be the goal. It has always been MY goal and again, "I'm" the important one in this equation. "I'm" the one enduring the consequences of this d*mn disease!!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 6:29 PM (GMT -7)   
Uh oh . . . sounds like a real pattern for you guys! Sorry CrohnieToo sad . . . but THANKS for your help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

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CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/24/2008 6:44 PM (GMT -7)   
Hey, Rosie, I can't complain. I was blessed w/an early Dx, even more blessed w/an easy resection and more blessed yet w/a 20 year total remission. And when it returned, it was w/very mild symptoms. I got more than a few snickers from more than a few doctors when I insisted it was the Crohn's returned. Some didn't even believe I'd ever had Crohn's because I had that 20 year remission. When my local colonoscopy and SBFT came up negative, I took off for Mayo Clinic where they have radiologists and radiology techs who are EXPERIENCED w/recognizing Crohn's disease. Sometimes you almost hate to be proven right and being able to say "I told you so". But I sure made it a point to say "I told you so"!

I've enjoyed 10 years of "symptomatic remission" and am now on the brink of having to agree to a second resection. I'm just not quite sick enough yet to agree to it. But both my gastro and Mayo are STRONGLY suggesting it. Altho I'm beginning to suspect I'm closer than even I anticipated. *sigh*
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 6:51 PM (GMT -7)   
Yikes!!! I'm grimacing in horror for you! Not a fun decision at all. I guess with this dd we each have our own personal roller coasters!!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

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FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 4/24/2008 6:55 PM (GMT -7)   
CD is only in my rectum. If it weren't for the two absceses and fistulas, I wouldn't even know I had it. I started Remi last summer and felt great. Fatigue is my only other symptom and since going on Remi I fet better than ever. I thougth that I had the solution. Then BOOM another abscess/fistula at the end of January. I had no idea it was coming.

Take the meds and keep up with your Dr.! Some damage can't be reversed.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 7:24 PM (GMT -7)   
Thanks FallColors. I'm now convinced.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 4/25/2008 10:49 AM (GMT -7)   
I might have lived with this disease 20-30 years.  I have IBS also so I never even knew I had Crohn's.  I never bled or lost weight.  It wasn't until I had a fistula to my bladder that I even considered seriously that I had Crohn's.  But even the surgeon thought it was diverticulitis.  Until they opened me up to repair my bladder and do a resection. My disease was so bad that they ended up removing half of my colon. Looking back I now realized that I missed signals.  Fatigue being the main one. 
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

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