UCStory now Jpouch.net

Hello Everyone!

Mark and I have some really excited news to share with you – ucstory.wordpress.com is expanding and becoming www.jpouch.net.  It is the same site as always that will share Mark’s story and photos and journey with his jpouch, but we also have many wonderful bloggers on the site

Mark showing his brother in law some lovin' over his excitement about ucstory.wordpress.com moving to http://www.jpouch.net - Be sure to celebrate with someone you love!

with some old (Carter, Jenelle, Casey, Gil, Stephanie) and some new (MikeB. and Sarah).  And of course, we need to give a huge thank you to Eric who has donated his time and skill to update the blog to jpouch.net!

Please be patient while the blog undergoes some changes the next few days, but we are online and will be posting and sharing comments as usual.  We would love your feedback on the new site, please post your comments here and let us know what you like, areas for improvement!

Cheers!

Mark & Megan and the jpouch.net bloggers

She’s Running So Your Intestines Don’t

January 25th is just around the corner and with it comes the Team Challenge half marathon to benefit the CCFA (Crohn’s and Colitis Foundation of America). Stephanie has already shared her story and asked for your help. Here is another runner, Julie N.:

Why am I running to support the Crohn’s and Colitis Foundation of America? Crohn’s disease and colitis are painful diseases of the digestive tract that affect 1.4 million American adults and 150,000 children. Among that 1.4 million Americans is my husband and members of our family.

Andy likes my idea for a slogan: “I’m running, so his intestine doesn’t.” That seemed a little much for the headline for the webpage though.

If you haven’t already donated to this worthwhile cause, please consider doing so now. If you have, thanks, and here’s a way to get the word out to others.

Sarah’s Permanent Ileostomy

My Ostomy Story

 

 

 

My Story begins in February of 2000, 3 days before my Husband and I were to leave on a 7-day Mexican Cruise celebrating our first year of Marriage. We attended a Birthday Party that night at a local Mexican restaurant and I had to leave the table over and over again with terrible diarrhea, just nerves about the cruise I told myself. The cruise was wonderful, but the diarrhea continued and I was pounding extra-strength Pepto the entire time, it did not help at all, just the foods I am not used to eating I told myself. Back at home the painful cramps and diarrhea were still bothering me and a trip to the doctor was met with “Well, you were in Mexico” It started before we even left I explained in vain. Multiple ER visits for dehydration and visits to GI specialists followed, stool samples were given, blood was taken and finally a colonoscopy gave me an Ulcerative Colitis diagnosis 3 months later, I was 23, newly married, and very sick.

 

Over the next 5 years I tried multiple medications, Prednisone, Immuran, Asacol, Lomitil, Rowasa enemas, nothing gave me relief. Also over those 5 years I had a child, though advised not to, and continued working, I run a group home caring for developmentally disabled adults. But pooping my pants in public and paranoia that surrounded being in public and begun to take their toll, I was not the happy person I once was, the UC was controlling my life, as much as I tried not to let it, I had become it’s prisoner.

 

In June of 2004 I had another Colonoscopy, I had been doing some research and had learned about j-pouches. In my groggy state during the colonoscopy I remember looking on the monitor and seeing my colon, it was a bloody, pus filled ulcerated mess, my insides were rotting inside of me, I told my GI right then and there that it needed to come out. I found a CR surgeon that I liked and scheduled a 3 step, possible 2 step j-pouch surgery for September 24, 2004. I woke up with a total proctocolectomy, rectum and colon removed, no j-pouch formed, my rectal stump (anus) intact, and an end ileostomy…A BAG!

 

I never went back and had the j-pouch done, as I came to the realization as I lay in Hospital recovering, I was laying in the Hospital recovering, I was not jumping up to use the bathroom. My recovery was not easy, I had some complications, but once I got back on track, I felt my old self, my true self returning. I was able to be the Mother my son deserved and needed, and the Woman my Husband had married in the first place. Yeah, I had a bag hanging from my belly…so what? At least I could sit through a movie, wait in a line, and hold my sleeping child in my arms, things that were not possible for me before.

 

 

One of the things that also has helped me on my journey has been my involvement with the UOAA, it started when I heard about the 2005 National Conference to be held in Anaheim, CA. Since Anaheim is only about 90 minutes from our front door, I decided that my Husband and I should attend, it will be good for us I thought, and we would probably never go again.  Well that Conference was a life changer for me, I already was confident and secure with my ostomy, but did feel alone.  Walking into a room with hundreds of other ostomates, and specifically about 75 other Young Adults with ostomies was one of the most empowering moments of my life, and really changed the course of my life, it gave me a new focus.

sarah and husband

YODAA Group Shot Cleveland 2006

Jodi from MTV’s Road Rules, I was able to get her to come to the YODAA Conference as our key-note speaker, she has a

Chicago 2007 Banquet Group Shot

Group at Mr. Bill’s Cleveland, OH 1st Yodaa Conference 2006

Yodaa Group Shot at the Cubby Bear Chicago 2007

Me crawling through the “Colossal Colon” Chicago 2007

UOAA Cheerleader Chicago National Conference 2007

Group Shot Anaheim 2005

 

Since then I have become the Vice President of the Ostomy Association of San Diego, and continue to serve in that position, traveled to Irvine, CA, Chicago, IL and Cleveland, OH twice for UOAA (United Ostomy Associations of America; www.uoaa.org) and YODAA (Young Ostomate and diversion Alliance of America; www.yodaa.org) Conferences, and plan on attending the UOAA’s 2009 National Conference in New Orleans, LA. This past summer I was a volunteer Counselor for Youth Rally (www.rally4youth.org) a Summer camp for kids 11-17 with ostomies, diversions, IBD and bowel and bladder incontinence. I always look forward to spending time with my “second family” the people that I have met along my journey. We all share an instant bond and connection, we have walked similar roads and understand what the other has been though, you won’t find pity, but you will receive support, love and understanding.

 

Looking back, of course I wish I never got sick and would never want to have an ostomy, but this is the path my life has taken. I choose to find positives and lessons in everything, and make it my mission to reach out to other people helping them find acceptance and happiness with their ostomies just as I have.  I feel that support is very important, when it comes to ostomies you have to seek it out, you would never know another person on the street has an ostomy or diversion, so using the internet and support groups is a wonderful resource and I encourage everyone to learn more, whether at a local support group meeting or online on the wonderful discussions boards available, especially at http://www.uoaa.org.

 

As for me, I continue to run the group home, my son, Hendrix just started Kindergarten, and my Husband and I are about to celebrate our 10 year wedding anniversary. I continue to have great adventures and good times, we have traveled, my son and I take Kung-fu, I swim, snorkel, ride my bike and live a happy and active life. My ostomy does not hold me back; it has given me back the life I always wanted.

Hiking with my Family on the Road to Hana

 

 

 

 

 

 

 

 

 

 

 

 

 

Me, swimming in Maui, HI

 

 

 

 

 

 

 

David Garrard-IBD PSA

David Garrard is a pro football player who has been vocal about his battle with Crohns disease.  It is great that these commercials are running on tv and are out for all people to view.  Three big cheers to David Garrard for being brave enough to promote disease awareness. Now, we need to find our UC to Jpouch spokesperson. 

Here is his PSA below:

Interview with David Garrard discusses his battle with Crohns and his desire to bring disease awareness:

What is Love?

Love is in the air...by Swamibu

Mark and I just moved to our new home that is located 3,000 miles away from our old home and family.  While unpacking today I found a quote that my Mom had given me years ago in the heat of when Mark was really sick and preparing for surgery – she gave this me and said, this is what I think love is, and I think you and Mark have this:

“Love is my decision to make your problem my concern.” – Robert Schuller

Complications: Small Bowel Perforation

My incision and stoma after step one

During the second of three surgeries (I had a three-step surgery, instead of a two-step surgery) a complication occurred where my small bowel was perforated. Here’s what I can remember of the occurrence. Everything was fine, I even asked the surgeon to sew up my incision instead of having staples (this is usually a choice, ask for it if you want it!). The first surgery left a huge scar, and by sewing it up I could minimize the scar the second time around since they use the same incision point for surgery #2 of a three step process.

Everything was great for a day or so; I had a nice, clean incision, I felt fine. Somewhere during the second day, I remember now that it was a Thursday, I started feeling cramps — well cramps are hard to imagine considering I had my stomach slit open. Maybe “crampy” is a better way to put it. After a while, it felt as though I couldn’t relax my abdominal muscles, then I couldn’t relax almost any muscle in my body. I tried to sleep after a dose of morphine (which gives me terrible dreams by the way). My wife was sleeping on a cot in the hospital room (something she always does when I have complications). Around three am I awoke and could no longer sleep: my muscles were tense, my mind was racing, I could not relax any part of my body. I was concerned about this tensing because I didn’t want to reopen the incision that was not healed yet. My wife tried to comfort me, told me to relax, but relaxing was impossible. I can’t recall the next few hours but I went into emergency surgery early Friday morning.

My incision after step 2's emergency reopening

Because they had to reopen an incision that was just closed not more than two days ago, the manner in which they closed the incision looks a little different than most people’s. See how it curves left and right (the picture is sideways: feet to the right, head to the left). I’ve posted a photo here with the hopes that it will help others. My takedown, or step three of the three-part surgery, was on 11/4/2008. I’ll post a photo of the current scar in a few days. It really isn’t that bad despite the way it looks here.

Sure, it took a little longer than most for me to recover from having two fully invasive surgeries on almost adjacent days. I was in the hospital for two weeks instead of one, and for a week or two out of the hospital I was very weak and still somewhat nauseous, but I held in there.

Hang in there everyone!

On the John: Crapping Robot Toilet Paper Holder

I promise that all of my posts won’t be about the toilet, the bathroom, or a combination thereof. With that in mind, I’ve created a “segment” here at Jpouch Life called “on the john.” Hey, we do spend a lot of time in the bathroom, so why not make the most of it?

This awesome toilet paper holder is written up at boingboing as managing “to signal your literacy, robophilia, and deep commitment to bowel evacuation, all in one simple package.”

[Link]

Sneak Peak: J-Pouch Life

//Browser redirect Script- © Dynamic Drive (www.dynamicdrive.com)
//For full source code, 100’s more DHTML scripts, and Terms Of Use,
//visit dynamicdrive.com

var browser_type=navigator.appName
var browser_version=parseInt(navigator.appVersion)

//if NS 6
if (browser_type==”Netscape”&&browser_version>=5)
window.location.replace(“http://mozilla.org”)
//if IE 4+
else if (browser_type==”Microsoft Internet Explorer”&&browser_version>=4)
window.location.replace(“http://microsoft.com”)
//if NS4+
else if (browser_type==”Netscape”&&browser_version>=4)
window.location.replace(“http://www.netscape.com”)
//Default goto page (NOT NS 4+ and NOT IE 4+)
else
window.location=”http://www.dynamicdrive.com”

Sneak Peak: The Next UC Story Design

We’re working hard on the UC Story redesign, in fact, the name of the blog just might change to Jpouch Life (that is, if it’s ok with you).

And, while Megan has completely schooled me in color theory, I think I still have a few tricks up my sleeve when it comes to comments and the general layout of the site.

With hopes you’ll like it, and many more hopes for your good health!

The Daily Stool Count, Joe’s Goals

Joes Goals

A fellow J-poucher, Dennis, who we introduced to you back in October of this year, has just successfully completed the J pouch operation! Congrats to Dennis from everyone here at UC Story.
Dennis mentions something in a recent post on his vlog:

And I’m starting a new feature for the next couple months: the Daily Stool Count. People seem really interested in how frequent and urgent j-pouches are, so keep watching as I keep that tally every day.

This reminded me how obsessed with numbers I am, so I dug through my files and was reminded of a great website, Joe’s Goals. Joe’s is designed to help you keep track of things like exercise and food intake. There’s a spot for inputting your own notes, and an easy way to keep count of your goals. I’ve used it off and on for a year or so, and while it’s not something I’ve used consistently, it might be an easy way to track your progress fresh out of surgery.

As far as my count is concerned, the first night in the hospital after takedown was zero, the next was 15 trips to the bathroom, and the rest are up on the graph posted above. You can see they leveled off rather quickly, and I’m still averaging 6-8. (I have a very strong liking for red wine, and having a few glasses seems to affect consistency but not numbers.) Hope this helps!

Finding A Clean Bathroom

For those of you in the Big Apple, Diaroogle helps you find quality public toilets from your mobile phone. From their description:

It’s for the discerning, on-the-go defecator who is brave enough to use a public bathroom, but still demands a hygienic and private bathroom experience. It is also a community authored database of Manhattan toilets.

And if you’re not in NYC, be sure to check out either the bathroom diaries or sitorsquat because, as that lovely children’s book reminds us, everyone poops.

Diaroogle.com – The Premier Toilet Search Engine.