Maintenance Drugs for CD

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JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/26/2009 7:32 AM (GMT -7)   
Here is my question.  In the past for many years I was not on any drugs for my CD, which I now know was a bad move.  Since changing GI's I have been put on almost every type of drug out there and nothing seemed to help me.  Most of them made me worse.  Next week I start Remicade to hopefully put the CD back in check.
Here is my question.  I know Remicade is used to reduce the inflammation and calm down the CD.  I won't be on this forever.  Is there any new maintenance drug out there that anyone has tried.  I haven't spoken with my GI yet as I want to take it one step at a time with him and I just want to get the CD under control first.  But now I am thinking and worrying that if the Remicade does work, I have nothing to take for Maintenance since I have had adverse reactions to everything.  Has anyone been in this situation and what have they done?
Crohn's Disease since '88
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/26/2009 7:38 AM (GMT -7)   
It's not a new treatment, but supplementary enteral nutrition has been shown to be effective at maintaining remission, and you wouldn't have to worry about drug side effects. You would likely take in the neighborhood of 750 calories per day of the liquid diet as a supplement to your regular meals on an ongoing basis to maintain remission.

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/26/2009 7:41 AM (GMT -7)   
I honestly don't think a liquid diet for the rest of my life is a solution.  I am not that sick that I can't eat.
Crohn's Disease since '88
 


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/26/2009 7:43 AM (GMT -7)   
I was told that I had Crohns in Aug of this year. I had areally bad reaction to my 3rd treatment of remicade on Sept 30th. It attacked my arthritis that is every where in my body and made it 10 X more painful. But so far oxycodone is helping with the pain.

Now I will be trying Humira at the end of November, even though both drugs have the same side effects. I want to know which drug will be the lesser of 2 evils.


hope thius helps

Sally

Post Edited By Moderator (Nanners) : 10/26/2009 12:12:03 PM (GMT-6)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/26/2009 7:52 AM (GMT -7)   
Actually Remicade is a maintenance drug as well as a remission-inducing one for many people. Some people have been on Remicade for 10 years.

I don't think Writer wasn't talking about a liquid diet, she was suggesting supplementing your regular diet with liquid nutrition, perhaps she can clarify if you're interested.


33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!

Post Edited (Rider Fan) : 10/26/2009 9:11:04 AM (GMT-6)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/26/2009 8:27 AM (GMT -7)   
Rider Fan is correct. I was suggesting eating your normal diet, but adding to it 2 to 3 portions a day of a liquid supplement. The liquid diet can be used to induce remission, and in that case it is used alone, instead of your regular food and beverages, for several weeks. But for maintaining remission, it is employed in addition to your regular meals.

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/26/2009 8:32 AM (GMT -7)   
ok, I missunderstood.  So basically it would be like adding a can of Ensure to lunch or dinner.  I wouldn't have a problem with that except for all the extra calories added.  I am trying to lose weight (one of those unlucky enought to gain to much weight on CD).  I will definetly research this though.

Crohn's Disease since '88
 


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/26/2009 8:57 AM (GMT -7)   
JavaJay - the intent would be to reduce your total solid food caloric intake and supplement with liquid caloric intake - your total food intake will remain the same. The thought process being that the liquid food is much easier on the system and would reduce inflammation by virtue of less digestion taking place while still maintaining caloric balance.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/26/2009 9:34 AM (GMT -7)   
It's definitely tougher if you need to lose weight. To avoid gaining, you'd have to do what the prior poster suggests and reduce the calories from regular food in order to offset those you're getting from the supplement. Those who tend to have chronic weight loss because of the disease simmering in the background (or short bowel syndrome) have an easier time supplementing, because they can add the supplement without reducing their intake of normal foods and beverages.

Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 10/26/2009 8:54 PM (GMT -7)   
In addition to the enteral nutrition, I would also look at the SCD. What most people don't realize -- especially in the early phases of CD -- is that the disease can become much worse and have a cumulative effect over time. It can happen as a gradual process that runs silently in the background. You might seem to be doing OK now (and feel like you can eat whatever you want and only have to take minimal meds) but if you let things go unchecked, there is a chance that you will pay big time later. If I had taken steps with diet early on, even without additional medications, I could have spared myself a lot of pain and suffering.
34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries
 

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