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twinsrock
Regular Member


Date Joined Jun 2010
Total Posts : 21
   Posted 6/27/2010 11:06 AM (GMT -7)   
Hello Everyone,
 
I am new to this forum, but not new to crohn's disease.  I was diagnosed 9 years ago during ( incidentally) during colonoscopy.  I have had only very mild symptoms thus far, for the most part.  I haven't really been on much medication except for pentasa in the beginning and entocort more recently, but am off of it now.  According to some of the diagnostic tests ( small bowel follow through) I have a narrowing that is progressing and very narrow.  I still feel pretty okay, no pain really, just gurgley stomach and some nausea.  The Dr. is now recommending 6MP.  This is a hard one for me as the treatment is surely to be worse than the disease.  Just wondering what your opinions are..thanks

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/27/2010 12:29 PM (GMT -7)   
The gurgling and nausea are typical signs of a stricture. The testing shows signs of a stricture and that means that the medicine you are on is NOT keeping your disease in check. 6MP is still one of the more "mild" of the CD drugs. I have been on it for over 12 years and it has kept me out of the hospital and out the the operating room. If you want your narrowing to continue, then continue on the medication you are taking. IMHO you need to be on some other medication to stop the narrowing and try to heal the damage that has been done, or you will end up with an emergency situation. The question is what medication do you want to try.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


twinsrock
Regular Member


Date Joined Jun 2010
Total Posts : 21
   Posted 6/27/2010 12:50 PM (GMT -7)   
Thank you so much for your feedback. Currently, I am not on any medication. 6MP is mild? With everything I read this med scares the heck out of me. I definetly don't want an emergency situation which is why I am thinking I need to do something pretty quick. In the meantime should I just drink liquids and avoid food? This whole thing is incredibly scary to me. Is there a certain med that you think is better for strictures. Thanks so much for your response

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/27/2010 4:34 PM (GMT -7)   
I think of 6 MP as mild -- before needing to go to Remicade or one of the other stronger drugs. I was on 6 MP several years ago and didn't have serious problems. Stupidly, went off of it on my own and am now in an uncomfortable flare and taking Prednisone again with lots of side effects, problems. Will gladly start 6 MP in a few weeks.

I say go for it. When you read about side effects remember that they only happen to a small percentage of people -- most do OK with the drug and that's why it's so commonly used.
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/27/2010 4:48 PM (GMT -7)   
Twinsrock: Hi, its interesting what different GI's think. I am newly dx and the GI doc wanted to start one of the TNF's. I didn't say no but only that this all made me nervous and so he added Lialda on top of Entocort instead of something more sophisticated. So 6 MP seems milder than the TNF's and I don't know if this information really guides your decision making. Although after reading a lot of what many posts on this web site, when I see the dude again I might revisit the issue. He did say that the thinking is starting to change with some discussion regarding aggressive treatment might have more merit than conservative treatment that only accelerates post symptom/disease advancement.
newby


twinsrock
Regular Member


Date Joined Jun 2010
Total Posts : 21
   Posted 6/27/2010 5:37 PM (GMT -7)   
Thank you all for your posts. This is a wonderful place to get information from others in the same situation.

Grumpygi: I recieved several opinions about which therapy to try. I went to one of the leading centers for IBD, Cedars Sinai. The Dr. there said Remicade is definetly the gold standard and he would definetly recommend that for me at this point.

My personal GI ( not at Cedars) said he would try 6MP first as Remicade has a lot more side effects.

9 years ago, when I was first diagnosed I was told I would never be a candidate for remicade as I am prone to narrowing and remicade was thought ( at that time) to cause the strictures to scar down or heal to quickly, thus causing a blockage. This is such a frustrating disease as I feel as though our options are few and we are merely lab rats.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/27/2010 7:33 PM (GMT -7)   
There seems to be 2 school of thoughts on treatment. One is to start with the most aggressive meds and the other is to start with the most mild and work up from there. It really all comes down to what you are comfortable with and which type of CD you have. My doctor, and I think I agree, believes that leaving the stronger meds in reserve is the way to go.

If you have the stricturing type, then you don't want to take something that will cause more stricturing. But you should always be on some form of maintenance medication. We have a chronic incurable disease which will always be working its little magic on a microscopic level, even if we don't have any symptoms. I learned this the hard way. I self diagnosed at 13, but was treated like I was a bit crazy. My mom had CD so I knew what I was looking at. 10 years later I was finally diagnosed and treated properly, but it took another 10 years to undue the damage that had been done by leaving the disease unchecked for so long.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/28/2010 9:03 AM (GMT -7)   
Zanne:  What did you do to undue the damage?  Are you talking about diet and medications or just improvement in medications?  Thanks! 

newby

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