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Crohn's Disease Forum » Your Story » Professional Patient


11-14-2012, 10:02 AM   #1
profpatient
 
Join Date: Nov 2012
Location: Illinois
Professional Patient

I am new to this forum, but excited to share what I have learned from this disease and to hear your words of wisdom and support. I was originally diagnosed with UC back in 1994 and it was changed to Crohn's Disease in 2005. In all that time, I have never been in remission. I have a very severe form of this disease. My doctors even call me an anomaly. I have endured every medication they have for this disease. I have also had 7 surgeries and now have an ileostomy. Right now we are trying combinations of drugs. I currently take Humira, Methotrextate and Cipro.( I hate predisone and will only take it if absolutely necessary) As if that weren't enough I also have other illnesses that complicate everything. I have a blood clotting disorder called Factor V Leiden. That caused me to have 7 PE's after I recieved a Mediport, so now I take a blood thinner injection daily. You can imagine what that does to my blood count when my Crohns is really active. I lost my son, Jaxon, at 28 weeks of pregnancy with no answers as to why. So put that all together and you can imagine my bouts of anxiety and depression. Through all of that I am still standing. I have a wonderful, supportive husband, family and friends. Also, my faith helps me to endure one day at a time. I know I shared a mouthful, but what gives me purpose is to know that maybe my experience could help others. I am grateful to find a site that can allow all of us to share and support. Hugs!!
11-14-2012, 10:34 AM   #2
SarahBear
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Join Date: May 2012
Location: Charleston, West Virginia

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Hi, welcome to the forum!

I'm really sorry you've been through so much. I don't have any advice to help you, but I just wanted to say I really hope things get better for you soon!
11-14-2012, 03:09 PM   #3
keke77004
 
Join Date: Nov 2012
Location: houston tx
So sorry for ur loss u said rite faith .. Continue to be strong and we deal with this disease in different ways I'm in pain also Hpe u feel betta
11-16-2012, 10:34 PM   #4
Jessi
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Join Date: Jul 2011
Location: Ogden, Utah

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Hello and welcome to the forum.

I am so sorry about your sweet angel Jaxon. I hope that you are able to find comfort in knowing that we're all here for you.
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~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
11-16-2012, 10:58 PM   #5
ForeverCrohns
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Hi Profpatient

Welcome to the forum!
11-16-2012, 11:38 PM   #6
PhoenixBird
 
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Join Date: Oct 2012
Location: Auckland, New Zealand

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Welcome! I'm sorry you've never been in remission, I hope that things will change for you in the future. Professional patient is a great name! Haha!
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Diagnosed: UC-December 2011
Meds: Tried and failed on: Pred, Azathioprine, Cyclosporin, MP6. Not ready yet to try methotrexate. Currently on Pentasa, Pentasa enemas, colifoam, imodium, suppositories, B12 injections, Vitamin D and probiotics. Starting Remicade August 2013.
Surgery: Appendectomy March 2013.
11-17-2012, 08:29 PM   #7
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome to the community. I'm sorry you've been through so much I'm glad you found your way here though!

I'm paging our Science Advisor and genetic guru, Judith to see if she may have come across anything regarding Factor V Leiden thrombophilia and Crohn's Disease from a genetic standpoint that may in some way be beneficial since there is an increased prevalence. Judith, Factor V Leiden seems to be implicated with the F5 gene. Any overlap?
11-18-2012, 03:20 AM   #8
Judith
 
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Join Date: Mar 2012
Location: California
Welcome to Crohnsforum Profpatient. I am so sorry you are having these health issues. But am so happy you have decided to joined us. I know you will be a great asset to the site.

Unfortunately, as David mentioned, there is a link between IBD and Factor V Leiden. The Chronic Inflammation seen in IBD can exacerbate the risk of veinous Blood Clots seen in persons with Factor V Leiden. I have started a wiki page on it here Factor V Leiden. Hopefully it might help others.

Welcome!
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