Intro. Out of the shadows

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pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1658
   Posted 1/28/2010 4:15 PM (GMT -7)   
Hi everyone! I figured it was time for me to come out of the shadows and into the light after reading the posts in this forum daily but never participating. I am a 44 year old female Paramedic in the New Orleans area for 19 years and was diagnosed with Crohn's in early 2008 after the death of my father. My initial symptom was only slight blood in my stools. After my subsequent Dr. visits and the original colonoscopy I was placed on several immune suppressors which seemed to start me on a slippery slope whereas my condition rapidly deteriorated. I started having the severely bloody diarrhea combined with profound weakness and luckily I fractured my little toe because during the exam, the nurse practitioner sent me for labs and found my Hgb at 5.0 and my platelets were clumped. I was given 4 units of blood immediately and required 2 more a week later. This depletion has caused several heart issues but I feel blessed to still be here after that experience. I was tried on many different medications and never experienced remission till Humira, however it was short lived. I was in remission for 5 months and the severe bleeding and diarrhea was back. I started on Cimzia in September of 2009 and combined with the other medication I take has me feeling better than I have since this nightmare began. My GI has advised me that once I no longer respond to the medications I will need to have my colon removed. I find this unacceptable and will continue to fight to keep my colon. I just returned to work 4 months ago after being out since March 2008 due to this illness and would like to remain employed to help others. This experience has taught me many things about myself and life in general.  I have learned I am a survivor and that nothing including hurricanes or Crohn's can take me down without a fight! I have learned to laugh and to cry and stop to smell the flowers. Thank you for being here as a strong group to continue to search for a cure!


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. 

Post Edited (pmedic) : 1/28/2010 5:05:46 PM (GMT-7)


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 1/28/2010 4:31 PM (GMT -7)   
Thank you for sharing this!  Yes, you are a survivor, and you will continue to be.  I love to hear stories of people like you who want to FIGHT for their health, and not let this disease control their dreams for life.  Please keep us updated on how you are doing!
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds yet, Garden of Life supplements


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/28/2010 4:31 PM (GMT -7)   
Welcome to the forum, the people here are awesome and there are no stupid questions.
I'm sorry to hear that Humira has failed for you. I'm currently on it now for 1 month and I hope it works.
You have a good attitude on not giving in to this horrible disease, keep up the fight!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1658
   Posted 1/28/2010 6:05 PM (GMT -7)   
Thank you for your responses!
Wolfie40- I think I was taken off Humira prematurely because I had problems with Cimzia until it was combined with the Welchol and Fish Oil. If Cimzia stops working I will ask to try Humira again in combination with the Welchol and Fish oil. 
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. 


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8587
   Posted 1/28/2010 6:17 PM (GMT -7)   
I see you got an original diagnosis of UC, but it was changed to Crohn's. Pity, as a removal of the colon is actually a cure for UC, but not for Crohn's. I can well understand why you don't want to lose your colon! But psychologically, I think it would be a bit easier to accept its removal if it meant you were cured.

Anyway, it sounds like you've had a fairly horrific start. Here's hoping that you can get into remission and keep your colon.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/28/2010 7:09 PM (GMT -7)   

hey pmedic,your story is heart wrenching to be sure, I'm cd since 1970 2 surgeries, my sister has crohns and had her colon removed, she now has ostomey bag, but she takes no med's and is in no pain what so ever. just no colon. for me if I had my choice I would go your route, I'm super active an a bag would be hendurance in my life style, I too eat organicaly and mostly vegan.

imuran and pred, vicodon when needed. sleeping med's always

one other thing if I ever needed a pmed I hope to god it would be one like you

artist guy


pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1658
   Posted 1/29/2010 7:53 AM (GMT -7)   
Thanks artist guy for the kind words.
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. 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/29/2010 8:05 AM (GMT -7)   
Hi Pmedic and welcome to Healingwell. I am glad that you are feeling somewhat better and able to get back on with your life. I hope this med continues to work for you. Welcome to our HW family.

PS: Sorry to be as stickler, but could you go into the control panel and edit your signature. Forum rules require signatures to be not more than 10 lines including spaces. I think if you remove some of the spaces, you should be okay. Thanks for your understanding.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1658
   Posted 1/29/2010 6:50 PM (GMT -7)   
Thanks Nanners, Sorry I forgot about the spaces!
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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