What to do now?

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XSaschAX
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/7/2008 5:38 AM (GMT -7)   
I've have Crohns disease since I was four (20 now) and have tried every treatment there is in the uk and some us treatments. I have pain in my back, legs, and belly and also I suffer from constant sickness. I'm at a loss for what to do now.

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/7/2008 7:17 AM (GMT -7)   
XS,

Did you notice The Crohn's resource link to the right of the posts? I has very helpful information about things Crohn's sufferers can do to help themselves. I was especially thinking of diet changes. I have a lot of pain and cannot use pain killers, but have found the SCD and other dietary changes to be very helpful, not in replacing my Doctors care, but in addition to. I have a nephew who was DX'd @ 4 years old and even after 2 resection surgeries, he has benefited greatly from the SCD. His joint pain and fatigue have greatly improved too. Have you discussed the back and leg pain with your Doctor? If not please do, these can be signs of a flair coming on, the nerve to your legs runs very near the part of your intestine where you absorb nutrition, and could be a sign of new inflammation, that prevents absorption, and that would be good to know before you go into a full blown flair.
Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 10/7/2008 8:21 AM (GMT -7)   
 
I'm looking into this next. I've been having some issues with remicade treatments and searching other alternatives. 
 
Miss

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 11:48 AM (GMT -7)   
Hi and Welcome to Healing Well .What are your Dr. 's suggesting for treatment for you . Where is your crohn's and what are you doing for it now?I was DX with severe crohns and follow a low redidue diet as I have fistulizing CD. and used to get alot of obstructions before I had the resection. I also take vitamins and B-12. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 10/7/2008 2:33 PM (GMT -7)   
Have you tried dietary management, as Margie asked? If you have not tried the Specific Carbohydrate Diet or the Lutz diet (outlined in his "Life Without Bread" book), I would recommend looking into it.

If all else fails, try to get into trials for Prochymal or another stem cell modality.

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 10/7/2008 8:01 PM (GMT -7)   
I'm sorry to hear you haven't had much luck. All of the suggestions above are good. Also, PB4 would be a great resource to you. You may want to address her directly.

XSaschAX
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/7/2008 11:47 PM (GMT -7)   
I've tried a lot of diets, including the elemental where you can't not eat and only have the elemental drinks. I was on that for three year. Diet changes do not really help. I ready eat a low fat, no dairy diet when I can eat.

Thank you for all the replies
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