J-pouch Life

We’ve been noticing that on our blog that visitors to the site are identifying with the surgery photos of Mark, Carter, Ashley – In other words, people are seeing people and stories they are familiar with. Now, we want you to share your story and photo journey with others. Similiar to Carters photo journey and story , we are asking for you to share whatever you think might help someone else!

We are hoping to show, but not limited to:

1) Female perspective

2) Delayed surgeries, surgeries with complications, surgeries without complications. Perm ileo stories, strictures, fistulas, etc….

3) We didn’t document the pre-surgery journey and we’d like to show that part to others. Pre-surgery as in the tests done before the surgery and the time frame of those. The night before prep, backing of bag, family settling, etc…..

4) And these are only a few ideas, so share yours. As you can tell on this site anything goes as long as it benefits your healing, and the future healing of others!

If you are interested, please email Mark and Megan at mdhilton@gmail.com

“In a society that almost demands life at double time, speed and addictions numb us to our own experience. In such a society it is almost impossible to settle into our bodies or stay connected with our hearts, let alone connect with one another or the earth where we live” – Jack Kornfield

Photo via: rachel a.k.

Time to send two of you good healing vibes since your surgeries are this week:

1)   Lottie (http://lottie30.wordpress.com/) , a 30 something female in the UK going in on July 24th for her IPAA surgery.  Lottie’s been sick a long time with UC and is ready to get back to her two kids and her husband as healthy and not full of UC!

2) Carmen is headed in on July 25th as long as her doctor doesn’t have to serve Jury duty and her blood count is count enough.  Carmen needs to get back in full swing so she can keep belly dancing!   (http://carmenscolon.wordpress.com/)

If you need some good reading, I recommend the following Richard Cohen Book  Strong at the Broken Places .  Take care and heal well, keep us posted!  And if Lottie, Carmen or your families/friends need anything, we are here or of course, the awesome communities like jpouch.org and other support groups that we have links to in the right column.  None of you are alone is this incredible life transition, be sure to use your support systems, and be sure to give back with your experiences as you alread are – the best healing I found was giving back

“We really don’t want to stay with the nakedness of our present experience. It goes against the grain to stay present. There are the times when only gentleness and a snese of humour can give us the strength to settle down” – Pema Chodron

Jason PA shared this video with us, he said it inspired him. And if you know Jason from his postings, he is an extremely realistic but positive voice – For Jason I can’t say what the inspiration is but for me, what I gained from this video is the message of impermance in life.  And how important it is to live in the present, live in the now.  Megan has really worked on learning to live in the present, live in the now, for me being in the present comes more naturally.  She will post something soon on books and resources that have helped her be in the “now moment”.    Although the video is inspirational, why does it take cancer or UC for so many of us to learn how precious life really is?  I feel like after being sick and going through the surgeries and chronic disease that someone switched the “on” switch finally in my life -

[youtube=http://www.youtube.com/watch?v=MrVBWdCnys4]

Here is some food for thought for those heading in to or pondering “elective surgery.” Instead of pondering and dwelling on what are all the possible complications of surgery, why not consider what is the BEST CASE SCENARIO?  Why do we always see the “worst case scenario” and why was it a revelation to me that seeing life from what is the BEST CASE SCENARIO would really make a lot less anguish in life.

My Mom is having surgery on her eye for glaucoma, and she is currently in a state of fear. All she can say is “what if the surgery goes wrong and I lose sight in my eye?”  A rightful fear, for sure – however, I never hear her say, “80% of this surgery works and removes the pressure from the eye and can solve the problem.”  Right now she is so involved with fear that she can not see BEST CASE SCENARIO, she will only see worst case scenario.

I just know that when we were coping with Mark going into to surgery we spent so much energy (as in years) dwelling on what could go wrong, and almost refusing to see what could go right.  As you know, his outcome has been all the scenario of “what could go right” so we wasted spent so much energy worrying about what could go wrong.   Of course, I know in retrospect so much easier now to say to you “See best case scenario” – but seriously, don’t forget to see your “best case scenario options“.

Awareness of impermanence is encouraged, so that when it is coupled with our appreciation of the enormous potential of our human existence, it will give us a sense of urgency that I must use every precious moment” – The 14th Dalai Lama

Photo via: Fanboy30

Below is a photo of Mandy and her friend simply having fun and NOT letting her ostomy get in the way of water skiing and living life. 

“haha all taped up and ready to go!  my friends taped my bag to my stomach so it wouldn’t fly around…and my friend Kevin taped his stomach so I wouldn’t be embarrassed lol”

A picture speaks a 1,001 words

Tony Snow

July 12, 2008:  Tony Snow has died from colon cancer, he was 53 years old.  Tony Snow served as White House Press Secretary for Bush, and other republican political ties. This post isn’t about politics, but the politics of IBD rather. This post is about the fact that he UC for 25 years.  After living with UC for 25 years, he found he had colon cancer, eventually the cancer spread to the liver which ended his battle.  In 2005 he had his colon removed from cancer, and in 2007 was back in care for an abdominal growth. 

Click here:  Tony Snow on CNN

Click here:  Tony Snow on Wiki

Click here: Tony Snow on www.jpouch.org Forum Discussion

About the risks of UC/CD becoming Cancer:  Since I am not a medical professional on this topic, I’ll only provide you with the links to proper sites so you can get accurate information.  Click here for the  CCFA Update on Colorectal Cancer: Knowledge is Prevention .  This is a webcast, article and brochure about the topic, and discusses what are the risks of colon cancer and IBD, etc…

PDF Brochure Click Here:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients

“Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic diseases that inflame the digestive or gastrointestinal (GI) system. Specifically, ulcerative colitis inflames and causes sores in the colon, while Crohn’s disease can inflame any part of the GI tract, including (in some cases) the colon. If you have had inflammation of the colon, you are at a higher risk for developing CRC than the general population (unless your inflammation is limited to the very bottom of the rectum). If your Crohn’s is limited to the small intestine, you are at a slightly increased risk for cancer in the areas that were inflamed. Even if your disease is in remission, you remain at risk.

The two factors that are associated with increased cancer risk are disease duration and the extent of the colon involved. The risk for CRC doesn’t start increasing until eight to 10 years after you develop Crohn’s disease or ulcerative colitis. People whose entire colon is involved have the greatest risk, and those with inflammation of the rectum only have the least risk.”

Please cllick here to keep reading and gaining accurate information about the risks:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients 

CCFA Billboard, Tucson Arizona USA

 Looks like “times they are a’ chaning” if CCFA is posting billboards to bring disease awareness.  Hopefully you’ll be able to see the billboard details, but the female in the photo is sitting on the toilet and resting her head against the wall with her eyes closed.  It’s a pretty powerful image.  The text reads “Crohn’s disease and ulcerative colitis can be overwhelming.  We can help!” 

My sister told me about this billboard, and I told her she had to photograph it for us to share with others. This is so great because not so much for those living with the disease but so that others affected by those with disease can see that it really is a problem!  The billboard is up in the city limits Tucson, Arizona USA (greatest city in the world).  Thanks Erica for the great photo!

If any of you have great photos that are about IBD awareness you should send them and we’ll share them with our readers!

Photo by: Erica (Megan’s Sister)

Carter S. (22 years old) has been generous enough to share his story and surgery photos with our Jpouch Life readers. Be sure to check out his complete story and welcome him to Jpouch Life! He tells an incredible story (he’s a great writer as well). We are so happy to have Carter sharing his story with you.

Carter.S with shirt over ileostomy bag

Here is the link to his story and more photos Surgery Photos and Story: Carter S.

THREE CHEERS TO RENEWED HEALTH!

I have my step 1 one year anniversary today, July 6th, 2007. And feeling incredibly well, with low BMs and overall feeling of good health. I am so thankful for chance to be healhty again, and thankful for all the great resources avaialable to get through this. I don’t need to tell you on this board how much of life was hindered due to UC, and how much time I lost deciding for surgery, etc…

And to celebrate this 1 year anniversary from Step 1 surgery, you should click below and watch the videos by Jordan Sweeney. He is living with UC and has made an excellent album with videos about his reality. Watch this first video Rain Song, and it will hit you to the bone -Megan saw it for the first time and tears came flowing, when living with the disease I don’t think always realized what it was taking away from us.

[youtube=http://www.youtube.com/watch?v=9JeZ0A7Jigw&eurl=http://ucstory.wordpress.com/2008/06/30/songs-about-uc/]

Thanks to everyone who helped us through these past few years!
Mark (1 year healthy living with No COLON and No UC)