Any Crohnies on Maintenance Meds?

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flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 9/25/2007 3:03 PM (GMT -6)   
I've been in a med-free Crohn's remission since my proctocolectomy surgery a year ago. Are there any other Crohnie ostomates out there who are also in remission without medicine? If so, for how long? If you do take maintenance meds, which ones do you prefer? Remicade? Humira? Others?

I see my GI tomorrow and just wanted to be prepared, in case she brings up the fact that I'm not taking any medicine.

JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 9/25/2007 3:29 PM (GMT -6)   
My surgery before this last one put me into remission for 7 years, medication free. I just had another surgery and am going to the doctor's next week to see what meds I should go on for maintenance. It seems that things have changed since my last surgery. I won't go on Remicade or Humira, but I'll think about 6MP if my liver tests come back normal. Let me know what your doctor says.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 9/25/2007 3:58 PM (GMT -6)   
I'm going on almost 2 years (in Jan.) without meds. I know some of them do seem to have some preventative properties but I just don't know ones. Sorry I couldn't be more helpful.

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 9/25/2007 6:35 PM (GMT -6)   

I have been in remission since my surgery in 1984!  No evidence of CD since then.   I have been blessed.    My CD was really, really advanced when they did my last surgery in 1984.  The surgeon removed rectum, what was left of the large, and several feet of small.  Prior to that I had several resections, and a temp. ileostomy to no avail.  Didn't respond to any of the drugs that were on the market at that time. 

I do take "maintenance" drugs for the diarrhea that is normal with an ileostomy  -- with as little gut that I have left.  (RX imodium - start my day with 3 capsules but usually don't take any more with my change of diet a year ago (was taking 3 capsules 3 times a day), Bentyl prn, & Nexium prn (recently my gastric ulcer has healed- change of diet again).  I have been so fortunate and am totally aware of that.  I have had my trials along the way with "bugs" and  partial obstructions. 

I wish you the best at your doctor's appt.  Are they going to do a scope to take a look see?   Are you having any symptoms at all?  Let us know how things go for you.  Think positive!
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 9/25/2007 9:25 PM (GMT -6)   
Judy, Jen, and Peggy~Thanks for your replies. I'm so glad to hear that you're all in remission! yeah

I'm feeling great, have no signs of Crohn's, and LOVE not having to take any medicine. I want to stay med-free and in remission and will let you know what my GI says tomorrow.
Cecilia

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/26/2007 11:03 AM (GMT -6)   
I saw my GI this morning, and she said that since I'm in remission, we should let "sleeping dogs lie," and she does not see the need for me to take any medicine. Yippee!!

She also said that since my disease was always in the same place - the colon and rectum (which has been removed) and never in the small intestine, I will probably never have a problem again, but of course, with Crohn's there's no guarantee. She said to come back and see her in a year!
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/26/2007 6:54 PM (GMT -6)   
CONGRATS Cecilia!!!! Good news for you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 9/28/2007 10:59 PM (GMT -6)   
They couldn't remove my rectum due to excessive bleeding when they attempted to do so. And, my rectum has Crohn's. So, I take Remicade every other month to keep the doctor away. Sometimes it can be a hassle, especially if I've gotten off the suggested 2 month cycle. But, it's worth not feeling miserable.

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 10/3/2007 5:35 PM (GMT -6)   
I was on a Humira study which was working very good for maintaining my Crohn's until I found out I had cancer and they pulled me off of it. After surgery, I still am having Crohn's symtoms (cramping, pooping a bunch) but I was just put on Codiene which helps for the pain and the pooping. I really was at the end of taking drugs which I had seroius side effects on all of them. (quit breathing on Remicade, pancreatitis with 6 mp yada, yada). BUT they also said that when your immune system is low (which Humira does) it could have contributed to the cancer .....
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

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