About the Photo Journal of
Mark and Megan:
Well, if you are reading this then you either know us personally, or you are seriously thinking about the surgery for yourself or a loved one. I tell my story in these photos, the comments were all documented by Megan (my partner) during the time because we wanted to capture what was happening and what we were feeling at that moment. Our goal initally was to provide a way for friends and family to know what I was/we were going through. But also, before I made the surgery decision and headed into surgery, there were no pictures for me to see of the process and real life people going through it. I wanted to provide a way to show others and their loved ones what the process somewhat goes and looks like. Now, keep in mind all j-pouch related surgeries go differently depending on doctors, your health, etc…So this is only 1 story of the journey, my story, and the story of my family, my recovery. Documenting this process was one of the most rewarding things we’ve done! We recommend for anyone to document their story, you’ll find the rewards of helping others with your story help you and your family heal. Also, the photo to the right is Megan and I in Mexico in May 2008, I’m there with my 6 month old J-pouch and life is good, very good!
ABOUT WHY MARK HAD THIS SURGERY AND UC INFO:
In simple words, Mark’s disease, Ulcerative Colitis (moderate to severe panulcerative colitis) made him have chronic diarrhea, bleeding, and urgency. His panulcerative colitis means that the entire colon and rectum are inflammed, some people have only parts of their colon inflammed. The related symptoms from those main symptoms were of both physical and emotional in nature. The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch). Go to this site here if you want more info: J-Pouch Illustrated.
Mark having to have the surgery is more extreme, a lot of people have UC for a lifetime and monitor/control it with medical intervention. The following NY TIMES jpouch story does a good job explaining that only 20-40% of UC patients need the surgery (% explained here UCSF Site), so if you have just been diagnosed it is important to understand you may be in the 60-80% who WILL NOT need surgery. A common question and one we asked is how did you know when to have surgery especially “For those not forced into surgery” and When did you know time for surgery. There are many posts out there like this one Jpouch vs Ileostomy and these help you feel not so alone in this journey.Stories of surgery decision making.
1) STEP ONE PHOTO SET IS THE REMOVAL OF THE COLON, TEMPORARY ILEOSTOMY.
Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedown’ is 2nd surgery). Step 1 was done in early July 2007 and he was in the hospital for 5 days . Thankfully, he experienced no complications from this major surgery. Step 2 surgery will happen after step 1 recovery. See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal
2) LIVING WITH A TEMPORARY ILEOSTOMY
Mark had Ulcerative Colitis (pancolitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to committ to the surgery. Many dietary and herbal options were tried as well. Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets. It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted. The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy. This has been the best decision for his health and quality of life. Click on Photo Set 2: Living with Ileostomy to see the rest of the recovery and life with a bag..
3) “TAKEDOWN SURGERY” – TIME TO LIVE WITH THE J POUCH:
Here is the link to the surgery series for “takedown” surgery. This is the 2nd surgery for Mark where they j pouch has had 3 months inside to heal while he lived with a tempoary ileostomy. The Ileostomy is removed here and his j pouch becomes his waste removal method: Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.
4) The photo journal has been posted on Mark’s Flickr Photo Journal since July 2007. The Flickr photo journal has had over 7,000 views. It has been used by nursing students for ostomy presentations, been used by parents to talk with their children about their upcoming surgery, and we’ve had many great comments from others about helpful to see someone else in their situation. We hope to move exclusively to use of this blog, but our old blog is still up for users familiar with that source.
Who are the Bloggers on UC to JPOUCH STORY?
5) Mark H. is the muse to this project, without Mark none of this would exist! Mark is a building contractor, and he has been in the construction industry for nearly 15 years. Mark is now 33, surgery at 31 years old. Mark is a west coast kid, raised in California and now living in Oregon while Megan finishes her doctorate degree. In December 2008 we will be moving to Georgia.
Megan L. is Mark’s main squeeze, I’m his partner of 14 years, and I’m 31 years old. A west coast kid, from Arizona and now living in Oregon. I’m working on a doctorate degree and soon to be finished in 2008 – how exciting as I’ve been in school forever . I will be an Assistant Professor soon in Georgia doing research and teaching on Housing Issues for the Aging Population and families living with chronic disease. Mark and I have a dog, no kids…yet….we’d like to now that he is healthy and I’m finishing up my degree.
5a) Carter S. has joined us as a guest blogger, and he has shared his photos and story on his page: Carter’s Surgery Journey.
5a) See on the top right hand corner there are other new bloggers including Stephanie, Casey, Gil, Jenelle, Rob.
5b) We hope to continue having other guest bloggers and new stories of surgery journey’s!
6) CONTACT US
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Three Cheers to Good Health,
Mark & Megan
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