How could I feel so well and still have active crohn's?

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snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 3/23/2009 9:34 AM (GMT -7)   
I run, I lift weights, I feel great and I continuously gain weight and eat anything I want. However, I mention to my GI that I think I have rectal inflammation and he recomends another colonoscopy to see if I'm still active. How could this be? in the meantime, he rec'nded Canassa supps which I'm not getting due to the cost. I've found ways to deal with the pain other than medicine when it comes to that area. Well, plus the Remicade, of course! 
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 3/23/2009 10:25 AM (GMT -7)   
Having rectal inflammation will not necessarily effect the other area of your disease... I will sometimes get a flare up of just that area... Canasa really makes a huge difference. It is very expensive, but if you have insurance, it should cover it. If not, you can always ask your doctor for samples.
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, tapering dose of 40mg Prednisone, Bentil and Percoset as needed... considering Remicade


lenagirl
Regular Member


Date Joined Aug 2007
Total Posts : 44
   Posted 3/23/2009 10:50 AM (GMT -7)   
It's more inconvenient than suppositories, but you can get generic mesalamine enemas (Rowasa), so if cost is an issue, that might be an cheaper option.

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 3/23/2009 11:05 AM (GMT -7)   
I have felt great the whole time. I curl, golf and walk on treadmill most days and do watch what I eat. I have been scoped eight times in last 20 months and every time it shows active crohn's. But it is restricted to a small area where I have a stricture in sigmoid colon.
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/23/2009 11:11 AM (GMT -7)   
I've only ever had success in treating my proctitis (inflammation of the rectom) with cortifoam....it is important to get on rectal meds as soon as you suspect you need them though, the sooner you treat the area the better.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/23/2009 11:15 AM (GMT -7)   
OK, I just spent 130 dollars on the Star Trek entire seasons1-3 remastered dvd collection. I guess I can splurge on healing my own body! Silly of me.

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 3/23/2009 6:15 PM (GMT -7)   
Hi Snappy. I think I know what you're going through. On more than one occasion the doc told me my labs were off the charts--all the while I felt better than ever. I guess that's one of the perks of CD! I would caution that if there is some activity, you do need to treat it--no matter how you feel. (And out of curiousity, do you really feel better than ever?? You mentioned experiencing pain... I'm still trying to figure out everyone's definition of remission, control, and flare.)

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 3/23/2009 6:45 PM (GMT -7)   

Hi!  There has been alot of discussion about what "normal" is.  Everybody of course has their own illness pattern.  I think that "normal" is what you are used to, can cope with, and allow you to run your life and do regular life functions.  I'm very accustomed to my muliple bowel movements daily (3-7) and some periods of nausea.  I always have blood and/or mucus.   It that active Chrons?   Is that normal?   From a doctors view, I have active Crohn's, and for me, it's normal--it doesn't need fixing and I'm not suffering.

 

I would be interested in other's point of view, too.
 
Puzzled Pix

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 3/23/2009 7:34 PM (GMT -7)   
I was using the generic rowasa enemas and didn't seem to help my rectum inflammation. I recently got put on Dicyclomine (generic bentyl) and has helped a lot with my rectal inflammation.

Trad
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/24/2009 2:29 AM (GMT -7)   
My doctor says some people may have active crohns and not even know it? Just the degree you have it, yours might be so severe that the medication only lowers the inflammatory response not take it away completely.

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/24/2009 4:39 AM (GMT -7)   

Well, I was wrong. Maybe I can splurge on DVDs when I get my tax refund like I did, but I cannot start a 140 dollar a month medications habit!! That's right folks, my copay is 140 dollars for Canassa. I won't be getting it. If my doc can't get me samples to try first I'll never get the first prescription.

 

Some have asked about my health. Basically, I do feel great. I thought I felt great when having my first flair, but I guess I was pretty sick. At least my fissure was a sign of that! Right now I have inflammation that causes me pain on random days when I go do #2. Today I'm fine. Two days ago I felt sure I was developing a fissure and started to call the GI.

 

Mainly, I feel good enough to ignore the pain that I can take care of in non medicative ways, but not good enough so that I feel comfortable going to the restroom everyday. When I compare to how I felt before Remicade my pain is easily put aside. But I will probbaly go see the GI just to make sure I'm ok. Eventually/


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 3/24/2009 10:15 AM (GMT -7)   
Snappy, I know what you mean. I was really sick with active disease but had no idea for years. Honestly, I had no idea what normal BMs were supposed to be and would have pain, bloating and gas at times but I just thought every one would feel like that if they ate too much or the wrong thing (every day). Why else are there so many commercials for Tums and things on tv? Seriously, I thought that when I was a teen. I played sports worked several jobs and felt what I thought was fine. The whole time the disease was scarring by gut. That's when it finally did me in. Still, I can be like you and have active disease and mostly handle it fine. I think as long as things come on slowly and build over time you get used to them and don't realize how far you have gone from normal. Only things like blockages, which are sudden and impossible to ignore really caught up with me.

Even though you can handle it, you are better off going to the GI and getting treated. Active disease does damage even if you don't feel it.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/24/2009 10:52 AM (GMT -7)   
I agree, inflamed. I guess I better call that doctor.

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!

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