The Blues meet up in Colorado

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Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/23/2011 7:31 AM (GMT -6)   
Last night I met up with Blueglass as she visited Colorado on vacation. We feasted on Mexican food, went walking along Clear Creek in Golden and talked non-stop about all things ostomy. It was wonderful to meet her in person. I highly recommend meeting up with fellow Healing Well posters if you get the chance. This is such a great community of people!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/23/2011 6:00 PM (GMT -6)   
That's awesome that you two met up and had a great time! yeah
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/24/2011 8:42 AM (GMT -6)   
That's great!! Glad you had a great time:)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 416
   Posted 7/24/2011 8:05 PM (GMT -6)   
Cool! turn

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/24/2011 10:10 PM (GMT -6)   
how awesome! :) i had a GREAT time too meeting Rosemary (esoR) when she came to visit israel :) she is such a sweet lady!!

so glad you two had such a great time together!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/25/2011 3:28 PM (GMT -6)   
Blueheron,

Yes, so glad you met up with Bluegrass. As Hodaya says above, she and I met while I was in Israel this past spring. We felt as if we knew each other. We are both such real people. I honestly couldn't believe I was in the company of someone else with an ileostomy. It is quite a feeling......sort of like "I'm home again....this person GETS IT when we talk." Yes, I too advocate the get-togethers. My dream is that we can all meet sometime with everyone well as they can be. We would make headlines in some newspaper! :-) :-) :-) Rosemary

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 7/25/2011 9:42 PM (GMT -6)   
Really looking forward to meeting NASCARon September first here in Gladwin. First time I ever looked forward to September.......brings winter.........

Dan

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/26/2011 3:43 PM (GMT -6)   
I'm home now, after a great trip, and meeting Blueheron was definitely a highlight. I was a little nervous beforehand that it might be awkward, but it wasn't at all; as she said, we just talked non-stop (well, we did stop, but because we were tired, not because we ran out of things to say).

This is a great community. When I was sick, I used to say all the time that I felt like IBD had made my life so much smaller. I feel like as soon as I decided on surgery, my life started getting bigger.

I look forward to hearing more stories of people meeting up! It was fun reading about Rosemary and Hodaya, and Dan and Ron, great that you're going to meet.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/26/2011 11:07 PM (GMT -6)   
welcome home blueglass. i so agree. i feel my CI also made my life SO small, but through that i got to connect with so many wonderful people from so far away. i feel this is something really good that came out of all my suffering, connecting with such a great community like this one :) glad you enjoyed your trip! and OMG i read your post about the TSA experiences.... i hope it doesn't get too embarrasing when i ever go traveling.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/27/2011 8:39 PM (GMT -6)   
I know what you mean about having a health problem and feeling alone. I did not find this site until after surgery and did not know anyone with Crohn's or an ostomy before. First, I found Shaz's ostomy site, www.ostomates.org, which is a great site! You should check it out, if you haven't already.

Not long after, I found this site, and it has been so amazing to meet all of you! :-) I was blessed to meet Peggy in person two different times when she and her husband were visiting family in Florida. She and I had emailed back and forth and talked on the phone, too, but I felt like our friendship really deepened after we met in person. I highly encourage meeting face to face, too, if you ever get the opportunity.

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 7/27/2011 11:11 PM (GMT -6)   
Makes me smile that people can meet from this site. Even though strangers, having such a profound connection that we unfortunately don't have with others in our lives! Fantastic!!!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/28/2011 8:26 PM (GMT -6)   
If I had found this site and logged onto the ostomy strand, with all of the knowledge that you people have and share regarding testing, I never would have had my original surgery and would not have ended up as an ostomate. You would have spared me the fate I met with due to lack of appropriate preop testing and the misdiagnosis of the sigmoidocele that wasn't, unneeded removal of the sigmoid, scarring of the colon and small bowel and all that followed.

BUT seeing as through this twist of fate, I did end up as an ileostomate (only way to save my life) and was lucky that one doc was willing to save my life, I am trying to pay the good forward. You all on this strand are more knowledgable than many docs I know. Together we could come up with a medical school curriculum that would revolutionize colon and rectal surgery medical school education!!!!

I actually did write an article on about.com called "Listen, be human first and a doctor second". They liked my advice to medical school students so much that they published it. It came from my year of being so gut injured from the sigmoid resection and scarred small bowel that I could not eat or poop for 13 months. During that time docs either tried to help but did not know how, didn't want to clean up another doc's mess, didn't want to deal at all, or they tried and when they could not figure out the complications they BLAMED ME. That was the WORST! So that is how I came to write a how-to for medical school students on about.com. Pretty cool huh? May as well do the best with the hand we have been given.

I'm now working on a patient advocacy book with hints I have not seen in any other patient advocacy books. Things patients just don't think of.

Rosemary

Post Edited (esoR) : 7/28/2011 8:30:20 PM (GMT-6)

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