UC to J-Pouch Story

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UCStory now Jpouch.net

Posted by Megan on December 30, 2008

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 www.jpouch.net - Be sure to celebrate with someone you love!

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

Posted in UC | 4 Comments »

Sarah’s Permanent Ileostomy

Posted by sarahbiggart on December 28, 2008

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.

 

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

Hiking with my Family on the Road to Hana

 

 

 

 

 

 

 

 

 

 

 

 

 

 Me, swimming in Maui, HI

Me, swimming in Maui, HI

 

 

 

 

 

 

 

Posted in UC | Tagged: , , , , | 7 Comments »

David Garrard-IBD PSA

Posted by mark on December 25, 2008

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:

Posted in UC | 2 Comments »

What is Love?

Posted by Megan on December 22, 2008

Love is in the air...by Swamibu

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

Posted in UC | Tagged: , , , | 1 Comment »

Finding A Clean Bathroom

Posted by Eric on December 10, 2008

diaroogle1For 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.

Posted in UC | Tagged: , | 4 Comments »

In the near future on UC Story

Posted by Eric on December 9, 2008

Eric in the Rockies

Eric in the Rockies

Hi All, my name is Eric and I’m going to be working with everyone to make some exciting changes to this blog. UC Story has grown so much in the past year that it’s time for some renovations. We’ve got some neat stuff planned for the future, including a site redesign, a new and simpler domain, brand-spankin’ new hosting package, and a bunch of other goodies to help you share your stories, thoughts, and feelings.

Mark and Megan will be busy this week (and beyond) moving across the country so I’ll try to hold down the fort. In the meantime, if there are any questions or comments you have, suggestions for the new site, design, features, etc., drop me a line in the comments.

Oh, I’m 4 weeks into a J pouch of my own, and I love it!

Posted in UC | Tagged: , | 2 Comments »

Good news!

Posted by jenellepower on December 5, 2008

Things have been quite the rollercoaster ride lately but I finally got some good news!  I have been waiting since October to find out if I have Crohn’s in addition to UC, in which case the surgeon would not be willing to do the J-Pouch surgery.  After 3 opinions, it was determined that I don’t have Crohn’s and so we can go ahead with the surgery!  The surgeon is aiming to do the takedown in one surgery but if doesn’t go perfectly, it’ll be two.  Right now I’m scheduled for February 10th but I’ve asked to have it bumped back a couple of weeks so that I have more time to complete my prospectus (proposal for my dissertation) before I go in.  Although the idea of having another surgery is tiring, I’m so excited that the ileostomy is really only temporary!  I was really getting used to the idea that it was permanent.  Really, I know now that it would be OK if it was permanent but would really prefer to have it reversed.

I will be doing some pre- and post-surgery pictures.  My scar is really bad, so I don’t want to freak people out but I think it is worth showing.  It is so bad because it was an emergency surgery and it got infected and so had to be reopened.  The surgeon says that he’ll do his best to remove the scar tissue but if it happens again, he’ll refer me to a plastic surgeon.

Posted in UC | 3 Comments »

Poll on disease awareness

Posted by Megan on December 4, 2008

I was recently flipping through the trend magazine, People.  The cover story was about Michael J. Fox and his battle with Parkinson Disease.  The article discusses Parkinson, Michael’s symptoms, states that nearly 1 million people in the US live with the disease, and it talks all about the advocacy being done for the disease, especially by high profile individuals.

My question then is this:  According to Mayo Clinic nearly 1 million Americans live with IBD (Crohns or UC).  But I’ve never seen a celebrity or high profile individual on the cover of magazine “I’m living with UC – and I sometimes have accidents in my pants” – Why not?  I figure if the shame of IBD related symptoms was not so embarrassing in society, maybe it would be easier to draw awareness to the diseases.

Therefore, I want your opinion on whether or not you think IBD would receive more public advocacy if the symptoms of the disease didn’t have to deal with things like poop and such?

Posted in UC | 7 Comments »

Marc Jacobs has UC

Posted by Megan on November 24, 2008

I was recently reading the November 27, 2008 issue of Rolling Stone Magazine, and they did an article on the famous fashion designer Marc Jacobs. The article is really interesting and talks about his story of living with UC – it is excellent that someone so high profile is willing to talk about their disease. My only concern though is that in the excerpt below, it seems some of the info about the disease may not be fully correct (i.e. the indication he has UC because of poor diet and smoking…that may not be fully accurate way to portray the disease). Excerpt from The Deep Shallowness of Marc Jacobs by Vanessa Grigoriadis:

“Jacobs didn’t take care of himself when he was out of rehab. He chained-smoked, ate poorly and soon developed ulcerative colitis, a stomach ailment involving the chornic inflammation of the large instestine (his father died from complications relating to this disease). “It was really debilitating,” says Jacobs. “I was in a lot of pain, and it kept getting worse, with more outbreaks and flare-ups. I lost so much time every day in the bathroom, uncomfortable and ill.” He relasped in 2006, but decided to try a different way to address his problem: He hired a nutritionist who advised a drastic lifestyle change, with no sugar, dairy, coffee or flour, plus exceercise, macrobiotic food, a nap and sunshine every afternoon. “Instead of Wendy’s five times a day at weird hours, and Coca-Cola after Coca-Cola, now I’m drinking six bottles of water, green vegetable juice and wheat-grass shots iwth giners,” he says laughing. (Grigoriadis, 2008, p. 136)

Here is a video with an interview with Marc Jacobs, showing how eats healthy, he even takes VSL#3…

Video from Style.com of the fall/winter 2007 Marc Jacobs Fashion Show below.  People living with UC achieve great things. Hopefully, Marc will do public advocacy for UC since it affects him and affected his father.

Reference:  Grigoriadis, V. (2008, November 27). The deep shallowness of Marc Jacobs. Rolling Stone, Issue 1066, p 61-65, 136.

Posted in UC | Tagged: , | 3 Comments »

HI EVERYONE!

Posted by pixiesndust on November 23, 2008

before it all began
before it all began

Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is yesac87@hotmail.com

sick times

sick times

I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.

big face

big face

Casey’s Blog and Photos Here

 

Posted in UC | Tagged: , , , , , , | 2 Comments »