Check our her blog here.

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (4)
• February 8, 2010 -- A little insight on my insides. (13)

We wanted to welcome Jessica to our community. Below is an email we received from Jessica and like many of us, she has had many struggles with UC and she is starting her first surgery Sept 25th.    See the link to her website below.

Dear Mark,
My name is Jessica, and have had Severe UC for 5 1/2 years. Have been on and tried every med out there, and am facing the 3 step surgery here at the end of Sept. The first one is scheduled for Sept 25th. I am a sea of emotions, and have been soaking up information online. I came across J-Pouch Life, and am loving everything about the wbsite. I have recently started a blog on blogspot as a sort of diary for me and my husband to help us better see the progress from where I was to where I will be. I am very interested in blogging more broadly maybe through ya’ll if my story could help somebody else out there as so many stories on your website have helped me! Maybe you can take a look at my blog, and get back with me on how maybe I could do this. Here is the link. Thank-you so much for your considerstion!

Please visit Jessica at her blog http://jessicaronson.blogspot.com/

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

Results are in

I have a kwazillion questions to ask the surgeon candidate. A kwazillion. Scientists maintain that’s a real number when it comes to questions regarding anything related to a scalpel. I’m currently compiling a list, spanning all areas from the ileostomy bag and the recovery process to insurance coverage and surgery experience. Each time I think of something, I add it to this list. If I don’t break the surgeon down into tears from the mass amount of questions on the list, I obviously don’t have enough questions. There are a few questions I won’t ask the surgeon about having a J-Pouch, though. Questions I won’t ask the surgeon:

1 ) Can I tell my friends I’m half android with a J-Pouch? Or is it half cyborg?
2 ) With the J-Pouch, will I still get nauseous from watching CW ads for 090210 and Gossip Girl?
3 ) Is it true I can time-travel with the J-Pouch if I eat enough chili?
4 ) What are we looking at for the percentage gain in Chick Magnetism with a J-Pouch?
5 ) Did you cry at the end of Titanic? The Notebook?
6 ) Since I weigh less (hello, I’m missing a colon), am I better at Pop-Lock dance routines?
7 ) Do J-Pouchers get discounts?
8 ) Are you House?

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)
• January 25, 2009 -- Jessalynn (10)

Brevin - by the glow of computer light

I just had a colonoscopy (explained by Mayo Clinic). While in the waiting room I thought of my UC in general and came up with this list. If you have Ulcerative Colitis, you know exactly what a “Colitis Incident” is. I just didn’t know what to call it. It’s when you get that urge to use the bathroom really, really bad. It’s this panicking sensation of you are going to go Number Two whether you’re ready or not. It’s not fun, but over time it gets less embarrassing, mostly because Colitis strips you of any sense of shame you might have had.  It’s a bit graphic, but we’ve all been there.

3. Great America

I’ve never been to Paramount’s Great America amusement park at the time. Colitis and roller coasters mix about as well as rabies and squirrels with little cowboy hats: it might look like fun at first, but at the end no one is laughing. But I went with a buddy of mine to help volunteer for an AIDS Walk that was taking place there, and set-up started while the park was still closed to the public. It was early in the morning and the park was abandoned except for a few volunteers routing supplies through to the main area. Abandoned amusement parks aren’t as creepy as you would think, but then again, it was light out with Spongebob memorabilia everywhere. I was walking around with a friend, admiring all of the closed exhibits and rides, when the urge came. I had no idea where I was in the park or where the nearest restrooms were. Disoriented and convincing myself that all the restrooms were probably locked by Spongebob-shaped padlocks, I resorted to going in some bushes near a basketball game exhibit, well out of the way of passerby’s. That was Colitis’s awesome way of ruining my first trip to Great America. About a year later, when I went back as an actual customer (what, they have a Spongebob Ride, in 3D!), I found the area where I had my emergency trip. It was only then that I saw that the bushes were right next to a hub of multiple security cameras. Reenacting the events in my head like an episode of CSI, I came to the conclusion that my butt cheeks were probably center stage on two of those cameras. I would like to apologize to the security guard who probably came across that thrilling moment.

2. A Valentine’s Day Gift

It was Valentine’s Day and my girlfriend at the time got me a nice gift bag filled with exotic chocolates. She made a card and placed it inside; it was really adorable. It was on the passenger seat of my truck as I was driving home one day when the urge to go hit really hard. For those with Ulcerative Colitis, you know that being in a car while having to go really bad is one of the worst situations you can find yourself in. I managed to find a parking lot, pulled in, and realized there was no way I could dart to anything remotely resembling a bathroom. The problem was there were people in the parking lot, and while I was at the far edge of the lot, I couldn’t risk getting out of my truck. I panicked to see what I had available in the car, and, as fate would have it, a giant gift bag, decorated with red hearts and filled with expensive chocolate, was all I had. Right then and there, in the front seat of my truck, I had to use a Valentine’s Day present as my bathroom. I wasn’t proud of myself as I half squatted over the bag, propping myself up with my legs. In my defense, I managed to save her hand-made card in my frantic scramble. But so much for the chocolate. This proves yet again that Colitis is not the most romantic thing in the world.

1. A Comedy Club on the Sunset Strip in LA

The urge to go came in the middle of what must have been a remarkably hilarious comedian’s routine. The men’s restroom had a urinal and a stall, but for some reason the stall was locked. I knocked, cleared my throat rather loudly, begged, the works, but nothing. Either someone died in there that night or it was out of order. I checked the lady’s room (always an excellent Plan B), but there were a group of girls in there putting on make-up in what seemed to be a giant group effort. I scrambled back to the men’s room and desperately glanced around. Then the epiphany came: I was there, the urinal was there, and heavenly rays of light shown down upon it. Yes, I dropped the trousers and somehow mounted the urinal to go number two. If you’re thinking about the logistics, I didn’t leave a mess. It was liquid and easily flushed away. In the middle of my urinal molestation session, a guy entered the bathroom. We made eye contact as he was half way through the door. I smiled and his eyes darted to the floor. A nice awkward moment of silence later, he casually backed out without a word. I still wonder what the guy thought that night. Oh, in case you were wondering, the sink was too high off of the ground.

What are your most embarrassing UC incidents?

These posts might also help out:

• January 20, 2009 -- On the John: Space Diapers to the Rescue (2)
• January 4, 2009 -- Vintage Toilet Paper Ad (2)
• December 20, 2008 -- On the John: Crapping Robot Toilet Paper Holder (0)
• February 11, 2011 -- Belladonna Wars? (7)

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 he 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.

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• August 4, 2010 -- Western Diet Causes Inflammatory Bowel Disease (0)
• March 27, 2010 -- Colston Thomas Mills (4)

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)

These posts might also help out:

• July 18, 2008 -- Best Case Scenario (5)
• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• July 11, 2008 -- CCFA Billboard (0)

Health Take has offered a very good webcast on how to talk to others about the disease you are living with.  The webcast especially addresses how with these diseases we often look “fine or healthy” but we are not.

“Often when you’re suffering from painful Crohn’s disease or colitis symptoms, you may look healthy and others may assume you feel better than you do. So how do you ask for the support, understanding and help that you need?

Join us as our expert guests share tips for effectively communicating about your Crohn’s disease and colitis pain and other symptoms with your family, friends and others in your life. From informing a co-worker about a difficult symptom to expressing your needs to a spouse or new love interest, you will learn about techniques that will help you feel supported and empowered. Plus, you’ll learn why it’s important for your emotional health that you speak up and seek assistance.”

Communicating with family, especially my family was EXTREMELY difficult. They just didn’t, couldn’t understand chronic illness and what it really meant.  When you have UC  ”are you feeling better today” has a whole new meaning.  We wrote our story of support and have put it on here for Our Story of Support.  Part of this blog has been to help others communicate their situation better. 

BLOG POST FROM LOTTIE in the U.K., she is headed into surgery at the end of the month and on her blog (which you should check out http://lottie30.wordpress.com/) she wrote the following post that made us think more about “communication”

“Talking to Megan and Mark about support etc and reading their take on it, made me realise that very often unless you ask you don’t get.  With this in mind I took an unprecedented decision to speak to them about it properly.  It is impossible to get my brothers and sisters in one place at once, especially as one lives in Sydney, so I emailed them all (and their partners/husbands).  I explained that I was having the op, what it entailed and more importantly how I felt about it.  I explained that it was a scary time for me and N and the kids and that we need their support not their sarcasm or dismissiveness (which is what I would normally get).  In response I have had some of the most lovely messages I have ever had from my brothers and sisters, which have made me feel loved and cared for by them like I never have before.  It is really special.  It has made me realise that yes, you definitely have to tell people what you want and then you might get it.  I feel supported in a way I never have before and that is an amazing feeling.”

Photo by: Jake Shears

These posts might also help out:

• July 18, 2008 -- Best Case Scenario (5)
• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• July 11, 2008 -- CCFA Billboard (0)

[youtube=http://youtube.com/watch?v=9JeZ0A7Jigw&feature=related]

The Rain Song

Sleep now, you’re on the edge of breaking down.
Breathe now, you can’t forget that one.
Rain fell, and you’re still along that same wet road.
Oh I’m only twenty one and I’m already so low.

When I’m in no pain, I’m so alive.
I hate my face when I take my pills.
I’ll live this way and I will until I’m gone.

But I’m okay. The topics change. I’ll be so great. I’m on my way.

It feels like rain when ever I flare.
On cloudy days I become aware.
Rain comes and goes, but when it comes, it likes to rot.

music and lyrics by jordan sweeney

[youtube=http://www.youtube.com/watch?v=NlTApl_Zhlc&feature=related]

In The Dark

I’m in the dark. I’m freezing.
The ghost is in my skin.
I’m paranoid, I’m fleeting. The stars are my light.
It’s dim, and I need more light.
Can I breathe tonight?

Is this me, my life?
Is there a reason for pain all night?
Will I be alright?

I’m in the boring season. It seems like no one’s here.
But all around is reason to live.
It’s only fear that pulls the trigger.
Will this last forever?

It’s time to see inside.
Is there medication that’s right?
Will I be alright?

I don’t want this. Please take this back.
God, I’m so scared. It’s time to relax.
Twenty seconds left for this time.
Will the next one hurt more? I’m fine. Why not?

music and lyrics by jordan sweeney

These posts might also help out:

• April 25, 2009 -- Therapeutic Art Sessions (9)
• February 1, 2009 -- Healing Art (2)
• January 10, 2009 -- Remaining Positive, (0)

Below is Ashely, she was about 21 years old when she had surgery, in 1 week she found out she had UC and then she was in surgery. Here she is showing her stoma, and her after the reversal her scar:

  
Here is Ashley’s scar after she had her “takedown’ surgery so she lost her stoma and now has a J-Pouch. Ashley is awesome and a real inspiration, here are her other photos Ashley’s Photos.

These posts might also help out:

• July 18, 2008 -- Best Case Scenario (5)
• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• July 11, 2008 -- CCFA Billboard (0)

Image to the left shows the large intestine and rectum removed, the formation of the temporary ileostomy, and the jpouch.  The whole series of photos can be found by clicking on the following jpouch.org link.

Image via:  Jpouch.org

These posts might also help out:

• July 18, 2008 -- Best Case Scenario (5)
• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• July 11, 2008 -- CCFA Billboard (0)