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pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1658
   Posted 3/26/2010 12:08 PM (GMT -7)   
Just wanted to fill you in on what is happening with my Crohn's world. I started flaring with severe bleeding last Friday. Although I have NEVER stopped bleeding since this nightmare began, this new onset bleeding would have required a blood transfusion within the next 2 weeks, as it was at its worst. I have been fighting an impending flare for the past several months but managed to stave it off with liquid diets, ect. I take Cimzia monthly and I noticed that about 2 weeks before I am due for my shots, I started having increased bleeding, ect till finally this month I broke out into a full flare. Usually once I flare,  my medication no longer works again after that so that is usually when my GI tries another medication. Unfortunately, I do not have very many left to try before they will be operating. I was told by my doc that I would eventually have to have my colon removed. Back to my story, I inquired about bee propolis from another crohnnie on this site and while I waited for the pills to arrive by mail, I decided to try slippery elm, which I purchased at Whole Foods. I started the Slippery Elm on Sunday and within a few days, my bleeding has nearly stopped completely and my bm's went from 30 per day to only 1 per day. I am amazed that my body actually responded to this supplement because I haven't had any luck with meds. My GI told me supplements were "Voodoo" and not to waste my money. I don't know how long this will work for me but I just wanted to throw this out there to those heavy bleeders like me. I just made a purchase online at Puritans Pride for 5 bottles for $14.98. They were buy 2 get 3 free. I have decided to continue to take my Cimzia as scheduled and stop the Slippery Elm temporarily to see if the Cimzia is even working anymore because if it is not, I plan on stopping the Cimzia and continuing the Slippery Elm indefinitely. I figure  if the Cimzia doesn't hold off a flare, I don't need to continue to take it and risk side effects. I will keep you all informed with what happens.
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
No surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions. 
Been through MANY medications with terrible results.
Currently on Cimzia, Welchol (for crohns), Ambien (prn), xanax(prn), Cod Liver Oil and Feosol iron.
Organic diet has made a big difference for me. 
Learning how to love life and relax. 


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 3/26/2010 8:14 PM (GMT -7)   
Sounds like amazing results.  Keep us posted.  When you say you are into a full flare, what does that mean for you? What are your symptoms besides alot of blood.  I'm thinking I'm flaring when I have blood. Just curious.
Diagnosed with CD 2006.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg. Tapering down, now on 20mg.
Colazal 3xday, Antioxidant strips
 Off of the Prednisone!!
I live by faith and not by sight....


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 3/26/2010 8:41 PM (GMT -7)   
I'm surprised a doc would say that supplements are voodoo. There is so much research coming out of the medical schools, like Harvard and Johns Hopkins, which validates the benefits.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes


Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 3/26/2010 9:26 PM (GMT -7)   
I'm glad that you have noticed the effects of the Slippery Elm. I started taking it but thus far have not had any major results. My gastro said it was okay to take as it wouldn't affect any other meds.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/26/2010 10:51 PM (GMT -7)   
I like when a crohnie gives us results of what works for them so much better than a no crohnies stupid ideas. I'll look aroung and try it thanks pmedic.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 3/27/2010 8:38 AM (GMT -7)   
I agree, that it surprises me as well that doctors don't promote supplements and diet. I see where some on here do but mine certainly doesn't.
Diagnosed with CD 2006.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg. Tapering down, now on 20mg.
Colazal 3xday, Antioxidant strips
 Off of the Prednisone!!
I live by faith and not by sight....


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 3/27/2010 12:03 PM (GMT -7)   
hldwodrgs said...
I'm surprised a doc would say that supplements are voodoo. There is so much research coming out of the medical schools, like Harvard and Johns Hopkins, which validates the benefits.

Got some links?
Cimzia, Asacol


pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1658
   Posted 3/27/2010 3:16 PM (GMT -7)   
dinkeydee- a full flare for me constitutes very bloody diarrhea at least 20 times per day, liquidy/sandy in texture (sorry so graphic), pain of at least 6 out of a scale of 10, no appetite, low grade fever and just plain sick and weak.
 
hldwodrgs- I do not care for my Dr. and plan on replacing her soon. I need to find a good GI in the New Orleans area.
 
grandpato2- I found out about this supplement here on this site so I am happy to share my experience with everyone.
 I only wish it will work for others as it has for me.
 
Crohnie for life- Are you a heavy bleeder? How long have you been taking it and what is your dose? I take 3 pills 4 times a day. I am even waking up in the night to take my pills because I want to heal completely before I stop waking myself up at night.
 
I will keep you all posted on my condition. Thanks for the replies!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
No surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions. 
Been through MANY medications with terrible results.
Currently on Cimzia, Welchol (for crohns), Ambien (prn), xanax(prn), Cod Liver Oil and Feosol iron.
Organic diet has made a big difference for me. 
Learning how to love life and relax. 

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