New Member: Opicalwaveguy

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Date Joined Nov 2003
Total Posts : 7122
   Posted 10/3/2007 7:36 PM (GMT -7)   
I found the following posted today at the bottom of an old thread. I wanted people to have the opportunity to respond to our new member.
Opticalwaveguy wrote:
My wife of 13 years has nearly given up on life. IBS in 2000, Crohnes in 2002, partial colectomy in 2006. Diagnosis change to ulcerative colitis and complete colectomy in 2006. We've gone through remicade which no longer works, cipro/flagyl cocktails and now we are dealing with anal fissures. To add insult to injury we moved to Salt Lake City where the doctors have absolutely no compassion for her condition and the University Hospital treats my EMT wife like a drug-seeker whenever we go to the ER for pain control. Our next and apparently final hope in the medical system is our referral to the Mayo Clinic.
She hates it here in UT and I don't blame her based on the poor actions of the physicians and medical insurance that fights constantly with the doctors and pharmacists. Our relationship is severly suffering and our kids are quickly slipping through the cracks.
We have our dream house, I have my dream job and we are both miserable. opticalwaveguy at yahoo dot com

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Regular Member

Date Joined Dec 2005
Total Posts : 259
   Posted 10/3/2007 9:05 PM (GMT -7)   
Are you going to the Mayo Clinic in Rochester? I am currently being treated at the Mayo in Scottsdale, Arizona. There is also a Mayo Hospital in Phoenix. I have been treated there for Crohn's over 7 years now. I was referred after a surgeon told me I needed an intestinal transplant and that my intestines were dead. The first consultation with my GI , he said " Your pain is real". I love everything about the Mayo and I felt like they could at least understand or figure out how to treat my Crohn's keep in from getting worse. I currently get Remicade every 8 weeks at the Mayo Hospital. The doctors at the Mayo have a team approach and they treat you literally from head to toe, and the whole person as well. I remember when my doctors referred me there or were thinking of sending me out of state to the Cleveland Clinic , I thought I might as well try the Mayo first since it was a 45 minute drive from my house in Gilbert, AZ. I hope you can get some help from the Mayo. I just got out of the hospital after a 9 day stay. Our insurance is out of network but has paid pretty good for the Remicade treatment and the hospital stays, etc. Take care, Amy
42 yrs, diagnosed Crohn's 1988, 2 bowel resections, 1 strictureplasty, 1 botched exploratory surgery, 1 emergency surgery for ruptured ulcer, Remicade every 8 wks, Immuran 100 mg, Protonix

Veteran Member

Date Joined Apr 2007
Total Posts : 532
   Posted 10/4/2007 6:44 PM (GMT -7)   
You might want to investigate this procedure. I personally know somone who had this done in St Pete. She has never felt better. She had to have a minor revision of her pouch, but it sounds like the way to go. She has to empty her reservoir twice a day with a catheter. And she is not on any pain meds now.
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 

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