Merry Lynn with son on his first birthday.

We wanted to introduce you to  Merry Lynn, she has been living with colitis for 10 years, for 3 years she has been in remission, and just learned she has high grade dysplasia. Her dysplasia means she will be having a colectomy to remove the risk of colon cancer. Her story is being shared on her blog and provides an important perspective into having surgery because of cancer risk not because of living with UC without remission.

Below is an email Merry Lynn sent to us introducing her story:

Hello my name is Merry Lynn Guy and on my blog I just list my name as ML (it’s what most people call me) . I was recently told that I need to have surgery due to the high grade dysplasia that is now presenting after 10++ years of having colitis. http://road2singledigitjeans.blogspot.com/ was originally created when I was attempting to be in a bloggy world weight loss group but then the group fizzeled so I had the blog name and title so now it is a blog about the medical path I am about to travel. I would be happy to be on your blog roll. I enjoyed reading Natalie’s Storyand have learned so much about what I am about to live through from your site. THANK YOU for creating it.

I have met with two different surgeons thus far and the verdict is the same.
The toughest part of my journey thus far is coming to terms with this verdict because I am a colitis patient that has been in full blown remission for just over three years. I have been living life to the fullest and now after my colonoscopy on 6/4/09 and some pathology confirmations I am heading towards surgery NOT because my disease is out of control but due to length of time having it and its now path to cancer.

I hope you will stop by and place me on your blog roll. I have yet to find a UC patient blog or site that talks about having to have surgery because of the same or similar presentation as I. So maybe my blog will be helpful to another.

ML

Please visit Merry Lynn’s Blog and give her the wonderful support that jpouch.net readers/bloggers can give!

These posts might also help out:

• March 11, 2009 -- March is Colon Cancer Awareness Month (5)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• December 29, 2011 -- Loss & Gain (2)
• July 20, 2011 -- 2 Years Post TakeDown (6)

Blue Star is the Official Colon Cancer Logo

Recently, Lisa wrote us and shared her FAP to J-Pouch Story.  FAP (Familial Adenomatous Polyposis) is a genetic disorder that causes polyps and often cancer in the colon. It aggressively runs in families as you can see in Lisa’s story, but there is little awareness of the disease in the public.  With March being Colon Cancer Awareness Month, it is excellent to bring attention both to Colon Cancer screening, as well as, awareness towards FAP.

FACTS from the Colon Cancer Alliance:

–  1 out of 8 people will be diagnosed with colon cancer.

–  90% of colon cancer is treatable.

–  To learn more about Colon Cancer and early screening visit www.ccalliance.org to learn more accurate information about early detection, symptoms, etc…

We’ve often discussed Colon Cancer on this site in various ways, here is a flashback to some of our colon cancer awareness posts:

• Rob’s Story of Being a Colon Cancer Survivor
• The Death of Tony Snow
• Becca’s FAP Colon Cancer Ongoing Battle
• 2009 Colondar Available

Please post your comments about your experience with Colon Cancer, any awareness is good awareness.

These posts might also help out:

• June 19, 2009 -- Colitis to Dysplasia Surgery (1)
• December 29, 2011 -- Loss & Gain (2)
• April 20, 2009 -- Welcome Christine and Ricardo to jpouch.net (2)
• August 1, 2008 -- Surgery Photos: Rob’s Story (1)

Rob Headed into Pre-Surgery Testing

Rob is headed in for surgery on Aug 8, 2008 for removal of jpouch and to gain a permanent ileostomy. His story is different than Mark & Carter’s because he had colon cancer many years ago, and it damaged his rectum area, leaving him with the option of a perm ileo to simply get his life back.  Below is an excerpt from Rob, and we’ll be adding photos and text of his journey as it happens.   Be sure to send him your support, he has a long journey of physical and emotional healing ahead!

Rob’s Story Explained:  “My Colon was damaged due to radiation I received 17 years ago but I’ve been on a medication called lomotil.  It controls B/M’s but unfortunately not all the time. I have had my shear of accidents so I can relate to Marks story when he was up on the lift and had an accident.  You see my problem is also with my Sphincter (the anal muscle that holds everything up and in). Because of the cancer they had to removed a large portion so I have no control of any B/M’s. I can’t even feel when I’m having one. I’ve been surviving because of the medication. It hasn’t been pleasant. I need my life back so I have to go for the permanent ostomy.”

Keep visiting we’ll keep updating with text and photos on Rob’s page:  Surgery Photos: Rob B’s Story

These posts might also help out:

• December 29, 2011 -- Loss & Gain (2)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• November 4, 2010 -- Fear Monger, MD (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)

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 

These posts might also help out:

• July 18, 2008 -- Best Case Scenario (5)
• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 11, 2008 -- CCFA Billboard (0)
• July 6, 2008 -- 1 Year Anniversary NO UC! (8)

Stew’s Bike Ride Fundraiser

Stew writes: “Thank you for visiting my fundraising page. Please dig deep and sponsor me online. The purpose of this ride is to a raise funds for this worthwhile cause buy mostly to raise awareness for this support group for those who have had this operation, because of either Bowel Cancer,Ulcerative Colitis or Chrones Disease .

The thought of riding for over 500km on a narrow bicycle saddle will not be lost on fellow “Pouchies”. I just want to illustrate that we are capable of normal activities post opperative, and give a little encouragement to those who may be feeling that the end of the world has come as they know it. At 59 yrs I am not an avid cyclist and only bought this bike second hand to complete this challenge,I shall be pulling a home made trailer of my own design  containing my camping and catering supplies, anticipate the journey will take 5 to 6 days and I will try to update my progress enroute. 

Training rides in the winter were very trying and the suport I received kept me going. I am told the tax break in gift aid changed at the end of March so don’t put off what you can do today. Thanks to all those supporting me so far. Don’t wait till the final day to donate it’s much more encouraging seeing what I am aiming for than hope it will come in after the event . A penny a kilometer is arount £5.00 and the tax man will add around 125p.

A special thankyou to Wendy who runs my local Folk Dance club who donated the proceedes from her raffle to the fund £81 raised – brilliant.

A trial run up tp to Adeburgh around 55 miles and back the following day over last Bank Holiday went well and thanks go to friend Dave who kept me company for most of the way. Donations to me personally have escallated in the final few days before the off and many more have placed pledges – not included in the totals quoted on these pages, so the final totals will I am sure fare exceed my expectations, A big thanks to everyone for their support.

It’s done – 349.2 miles at an average speed of 8.3 mph

Started Saturday 7th june at around 6.00am outside Aldeborough Newsagents who kindly took my photo as proof. Saturday became one of the wettest and miserable days I can remember, finishing some 65 miles later about 20 miles short of my target. Wet through and cold I spent a difficult  night under canvas, and after repacking all my gear to separate the wet from the dry I set off late. Covering around 55mile again well short of my target miles. I realised that towing the trailer I would not be able to catch up my schedule, so all nessecities were packed onto the bike and the trailer was left behind near Stamford . Two good but hard days followed and I resorted to B&Bs and for the final day I abandoned all but essentials for the final push. Completed on Thursday 5.00pm ish I was reunited with my wife, leaving the symbolic entrance into Aberdaron till the Friday morning for pictures etc.

On the way I got Post Offices to verify my bike trip computer and stamp a sheet with the date and Post Code  to verify that I had indeed carried out the journey. My friends at Cathedral Squares Square Dance Club have come up trumps Boosting my sponsorship by £126.00

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: IA will receive your money faster and, if you are a UK taxpayer, an extra 25% in tax will be added to your gift at no cost to you.

So please sponsor me now!

Many thanks for your support.”

These posts might also help out:

• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• December 29, 2011 -- Loss & Gain (2)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• August 26, 2010 -- “My Hole” (4)

*Be sure to send Cynnycal your best wishes, being on her 2nd round with colon cancer – you can never get or give too much support*

Through sharing Mark’s surgery, we learned the power of images can really say what needs to be said and words aren’t needed.  And I’ve been haunted by this image that is attached here.  I think it is the first time I really conceptualized “colon cancer” or even “cancer” for that matter.  The woman in the photo is on her 2nd battle with colon cancer, and in her blog she is so raw and honest about what these experiences are for her.  About this photo she writes in her blog Cynnical and The Colon Chronicles “And this is how I normally can be seen while on chemo:Don’t I just look thrilled. There ya have it. I guess when I’ve bitched in the past about how people don’t seem to fully grasp that you’re “sick” or not well, if you don’t look like the typical chemo patient…didn’t lose your hair, no outward signs of illness….Guess this time around chemo made sure I got some outwardly visible signs.”

Mark and I would always joke (went from said seriously to eventually a joke) that if you are going to get sick with something chronic and life altering, you better make sure it is a mainstream disease like cancer, because people don’t respond to your struggle if they don’t know your disease. So having UC is kinda obscure, we found most people knew Crohn’s sorta but not UC.  And as Cynnical points out people not grasping your sick unless you fit the stereotype of what sick should be.  I guess this is a HUGE reason why need more advocacy on chronic disease.   

Also, it is time we all start addressing the very real issues of self-esteem and the related symptoms of disease:

Self-esteem and IBD is discussed “Some of the emotional challenges that are typical of those diagnosed with IBD are:
1. Self Esteem
2. Self Image
3. Depression
4. Anger
5. Grieving
6. Sense of loss that your life isn’t ever going to be the same
7. Feeling alone
8. Feeling different
9. Shame/Guilt
10. Embarrassment
(*Some of the items on this list were offered in Sherry Porat’s presentation at the IBD conference on Nov. 3,2007)”

These posts might also help out:

• June 19, 2009 -- Colitis to Dysplasia Surgery (1)
• March 11, 2009 -- March is Colon Cancer Awareness Month (5)
• August 1, 2008 -- Surgery Photos: Rob’s Story (1)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)