Is this remission or do I need more medicine?

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nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/15/2007 3:28 PM (GMT -7)   
Went for follow up to GI doc today and he said that the sporatic pain is ok compared to the bad pain I had previously.  I told him I still had diarrhea every time I urinated plus additional larger amounts in the early morning up to 7x a day.  Other than that there is no other symptoms other than gurgling. He told me to continue on the pentasa and entocort.  He said I can add questran if I wanted to help with the diarrhea but I am not too fond of the questran. 
 
I am wondering if this is my new normal or will my body go back to normal stools ever???  Not sure if I should ask for more medicine to get back to normal or just be patient since I am new to Crohns I don't know what to expect.
Thanks
Chris

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/15/2007 3:53 PM (GMT -7)   
You're going to the Mayo soon right? I would definitely get a second opinion. I don't understand how any doctor can tell you it's okay to be in ANY pain,

however......aren't you going to Mayo because of PSC or suspected PSC? If so, the stronger meds are probably no longer an option because of the damage they can do to your liver.

You really need to have a good conversation with your doctor and tell him your concerns while at the same time finding out what he's thinking and why he thinks this is the best he can do for your treatment.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 10/15/2007 4:32 PM (GMT -7)   
I have to respectfully disagree with you Judy. Sometimes the effects of seeking complete relief from pain are worse than living with the pain itself in the long term. I live with pain every day and have for 30 years. My pain isn't constant and i understand the mechanism that causes me to have pain. The daily pain I experience is not so much a sign of disease activity as it is mechanical. I am willing to work through these painful episodes rather than be medicated, not only because I suffer debilitating side effects from most of the pain relievers on the market, but also because for me it is important to be in touch with what's going on in my body. I know what normal pain is and therefore I have a pretty good sense of when something is wrong. Also, because I have stricturing crohn's, if I were unwilling to accept any level of pain, I would run out of bowel before I run out of life. According to John Hopkins' site people with stricturing crohn's come to surgery on average after about eight years with the disease and unfortunately that cycle repeats itself after each resection.

When I was diagnosed 30 years ago I already had a significant stricture. Becuase I have been willing to live with a moderate amount of discomfort I have been able to stretch out the time between resections to an average of once every 15 years (although the time between the first and the second was shorter).

Everyone experiences pain differently and the intensity, frequency and cause of pain differs in one crohn's patient from another. I believe that it is acceptable for a physician to engage a patient in a conversation about pain thresholds and to encourage, in some instances, patients to try to manage their normal level of pain.

I don't think we are any where near as evolved as we should be about appropriate and adequate pain management. I am certainly not arguing that there isn't an appropriate place for pain medication in the medical management of crohn's patients. We could probably all benefit from seeing pain management specialists, but that doesn't mean that all pain is bad and that the goal should always be to eliminate all pain.
Belleenstein:

30+ years living with Crohn's.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/15/2007 4:49 PM (GMT -7)   
I just don't believe it's right that her doctor made the judgement that she should live with this pain if she wants relief from it. As I stated, it's very possible that this is all he can do for her for now until they clarify her liver problems, but he should at least have explained his reasoning. I'm just a big believer that no one should HAVE to live in pain, and everyone has different tolerances which can change from day to day. I've always been lucky though, my doctors have always been helpful in my pain management.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/15/2007 5:01 PM (GMT -7)   
Hi Chris,
 
How long have you been on the Entocort? It can take up to 8 weeks of Entocort, 3 pills a day, to achieve full remission.
 
After that, Entocort is recommended as a maintenance med for another 12 weeks, at 2 pills a day.
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