My new blog on doing outdoor activities with an ileostomy

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Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 5/11/2011 7:07 AM (GMT -6)   
Check out the new blog I started, Ostomy Outdoors, which features films on getting back into outdoor activities with an ostomy.

http://ostomyoutdoors.wordpress.com/

-Heidi
-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 11/8/201

Post Edited (Blueheron) : 5/11/2011 7:12:47 AM (GMT-6)


blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/11/2011 8:04 AM (GMT -6)   
Very cool! So glad you got to go, and you look great out there. Glad the pouch cooperated, sounds like you're close to being back to being able to do what you love to do and used to do.

Does your husband make videos professionally or just as a hobby? Very nicely done.

It's so beautiful there.....

Hmmm, a video series about me teaching math w/an ostomy bag would not be so compelling.... but you do inspire me to think about ways to share more publically. It's a hard balance w/the privacy, but glad you decided to make the videos.
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

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/11/2011 1:33 PM (GMT -6)   
great blog Heidi! love it.. I'm facing a perm ileo at the same age as you.. and I was a triathlete and marathon runner before. You're truly inspiring!
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/11/2011 3:46 PM (GMT -6)   
blueheron:
 
Nice videos and a great written blog....congrats on getting back on the slopes,and I hope to follow your blog as the days, weeks, and months go by... turn
 
enigma
 

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/11/2011 5:53 PM (GMT -6)   
Awesome - absolutely terrific and inspirational.  Thanks for sharing as this will be worth so much to so many.  Great way to pay it forward, thank you again.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/12/2011 6:56 AM (GMT -6)   
That's great yeah

I always try to let people know that the sky is the limit...unfortunately, some put parameters on what they 'can' do with an ostomy...not the other way around.

For me, here is nothing better that taking a few hours to paddle around one of my local reservoirs or going for a run outdoors!
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!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/12/2011 7:15 AM (GMT -6)   
so cool! really enjoyed watching the videos. so glad you're back out there enjoying same things you always used to. you're an inspiration!
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

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/14/2011 10:52 AM (GMT -6)   
Heidi: just checked out the blog and watched your video. Absolutely awesome! I was all teary-eyed watching it and just seeing you doing something you obviously enjoy so much. Like you, I just want to let people know it is all possible. There is life after surgery and IBD! I'm just starting back to running and it feels amazing. Keep up the good work with sharing your story and I will do the same. :-) I think the more we can talk about these topics, the more accepted and main stream they will become which benefits all of us.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

JMCH3
New Member


Date Joined Apr 2011
Total Posts : 13
   Posted 5/15/2011 3:28 PM (GMT -6)   
Heidi,
Your website is inspirational. I was just saying how I'd like to start a blog for active ostomates... i think it would be so useful to have a venue to discuss issues regarding active lifestyles, like equipment, hydration, etc.
I just read your most recent post about changing your ostomy, and I wanted to offer an (unsolicited) piece of advice: if I eat 3-5 marshmallows about 1/2 hour before changing my ostomy, it slows down my transit time and allows me about an hour of peace to successfully change out the wafer. It works almost every time (unless I have just eaten a big meal or drank a bunch of coffee).

I have a question - are you concerned about getting a hernia for any particular reason? Did the doctors warn you about this? I have heard other people with ostomies mention issues of hernia, but I have not heard anything personally.

Keep up the great work!

Sincerely,
Jeannemarie
Dx UC in 2004. No real issues till Nov. 2009 - huge flare. Allergic to remicade, non-responsive to Humira. Steroid refractory. Dx as indeterminate, April 2010.
Total colectomy w/ jpouch formation, May 2010.
Pain/inflammation in diverted Jpouch, June 2010 - present. On Cipro, Flagyl, Prednisone, Azathioprine. Dx Chron's Oct. 2010 (disputed).
Scheduled Jpouch removal and permanent Ileo, May 2011.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 5/15/2011 4:54 PM (GMT -6)   
Thanks for the positive comments on the blog everyone!

Jeannemarie, I always use the marshmallow trick too. It usually works like a charm for me, but for some reason this day it did not. I plan on doing a seven day backpack trip in the fall and joke with my husband that my marshmallows, appliances and TP will take up half my pack:)

I do worry about hernias, both incisional and parastomal. I may have a slightly higher risk for an incisional one because I had a poor reaction to the dissolvable sutures used in my abdominal wall and it took a while to heal. This is why I don't plan to try rock climbing until the fall when I am a bit stronger, and even then will stick to the more slabby routes for a while. So far I have been wearing a NU-Hope hernia belt while doing my outdoor activities as prevention, but I don't know how much protection this really gives me. My surgeon did say that I would be able to climb and do everything I did before, just to ease into things and listen to my body. He was the one who suggested I go snowboarding so soon. I asked him if it would be safe to buy a season pass for next year and he laughed and said "what about finishing out this season?" Sure there is a danger of hernias, but I can't let the fear of them stop me from living the life I want. I will just be as sensible as possible.
-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 11/8/201

Post Edited (Blueheron) : 5/15/2011 4:57:29 PM (GMT-6)


Vonnyj
New Member


Date Joined May 2011
Total Posts : 8
   Posted 5/23/2011 9:44 AM (GMT -6)   
This blog is great. Had a temporary ileostomy, which has been reversed but I know plenty of patients who would really appreciate this info.
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