J-pouch Life

I don’t want to steal thunder from Lizz’s post below. Nay, instead she actually inspired me to post my update. I would just do this as comment for her post but I don’t know how to add pictures as a comment.
November 11th will be my 6 month anniversary of the first surgery and well, it’s pretty amazing. So much so that I have no idea what word in English conveys this clearly and am thus establishing the word jaypouchirifical. This is what I’ve been up to and how my body is responding:

Weight: When I had UC, my weight would fluctuate as I had flare ups. When I got out of the first surgery, I was coming in at a 152 pounds. Now, I’m sitting around a 183 pounds and, here is the best part, it no longer fluctuates all over the place. I’m super proud of this achievement. It means my body is stable for the first time in 8 years!!

Poop: I still go more than an average person, but come on, people. Come on. During UC I had constant pains and had to run to the bathroom every hour or so. I now don’t have to rush or anything. It’s all rather casual now. My stool is also more controlled now (you know: solid, smells like flowers, wins awards).

Diet: I have less restrictions now than when I had UC. I started slowly, sampling various foods and transitioning my diet to new food groups. So far, everything is good. I do avoid a few certain styles of food because, well, the results were mixed. Leafy salad, corn, and Mexican food aren’t on my Favorites List, but there hasn’t been a food that totally wrecked me. For those concerned about Mexican food: no, you won’t have to sacrifice the deliciousness. But I do recommend you pace yourself ha.

Fiber: BeneFiber is awesome. I don’t have to take it as often. In fact, I havent’ taken it in over a month. Instead, I just take it when I’m going to try a new food or eat something that I know will cause issues (looking right at you, soup).

Meds: Aside from the occasional Pro Biotic (VSL #3) and multi-vitamin, I currently don’t take any medicine. For someone who used to take 12 Asacol tablets a day on top of other fun pills for many many years, this is extremely liberating. Weird, almost. But I feel like I earned this freedom by going through with the surgery.

Exercise: I go the gym 6 days a week. I’m not trying to get buff or win World’s Strongest Man, regardless of what my previous claims might have implied. Instead, I’m just really, really, really excited about being healthy again and am trying to maintain my health by helping my body out.

Scars: Check it out:

Aside from the large scar that I've had since I was a wee baby, you can barely tell.

Team Challenge: I learned about this from fellow j-pouch community member Elise. Team Challenge is having a fund-raiser half-marathon this December in Las Vegas for the CCFA and I’ve been training dangit. When I had UC, I couldn’t run unless it was straight to the bathroom. Now, get this, I can drive to the city, train, come back, and THEN use the bathroom. And when I say “train” I mean pretty long distances. This past weekend was 5 miles walking and 5 miles running. I’ve never run 5 miles in my life, ever. It’s soooo motivating to be surrounded by a team members all gunning for the same cause: finding cures for UC and Crohn’s. And yes, I’ve been raising funds. All of my fund raising goes straight to the cause: YOU. I’m doing this for everyone affected by UC or Crohn’s. I hope to make you all proud! Here is my fundraiser page. Lizz you better donate a grand or I’m sending you “questionable” pictures.

Training for a %$#ing half marathon.

There’s that great line in the bible (or the Byrds song, whichever you prefer), “a time to weep and a time to laugh, a time to mourn and a time to dance.”

Prior to my diagnosis of UC and, subsequently, Crohn’s, I was a devoted and passionate dancer.  It was my “thing.”  It was also one of the first things to go when I got too sick to be that physical.  For a long time, I was truly devestated that I couldn’t dance anymore-and I really couldn’t-not the way I had my whole life, not the way I was best at, not the way I loved.  I was actually teaching jazz when I was 17 and totally chock-full of Prednisone.  I would go into the tap room because it had the cool tile floor during my breaks because the Prednisone made me so hot.  Eventually, Crohn’s kicked my ass.  I was able to go to Europe for a few weeks in the summer after my last year of teaching dance, but as soon as I landed in the states, I was admitted to the hospital for a week for a flare.  The following years were tolerable.  I wasn’t teaching or taking classes, but I was in college, doing well in school and that occupied me enough to serve as a distraction.  Don’t get me wrong, I’d occasionally bust it out in my dorm room when my roommate was away, but it was nothing like it used to be for me.  About a year later, my disease progressed rapidly and severely.  I tried several treatments, nothing worked.  Eventually the bleeding and fatigue got so bad that I physically couldn’t leave my apartment, could barely eat, and stayed mostly in bed.  There was no dancing in the living room then.  Soon after, I made the decision to have the J-pouch surgery, which I maintain is one of the best decisions I’ve made in my life.  Although I felt incredibly better after getting the diseased colon out of me, things were a struggle for the first year.  About 9 months after the final surgery, my doctors discovered I had Crohn’s. I started Humira and a few other drugs and am now in my second year of remission and doing great! I am also proud to report that I attended my first dance class in TEN years tonight.  (Has it really been that long?)  Let me tell you, I am hella PROUD of myself for A) going back, B) keeping up with a room of 18 year olds, ten years younger than me, and C) for doing all this with my rockin’ Jpouch and Crohn’s disease.  For a long time, I remembered thinking I’d never dance again-that the diseases would take away all joy from my life because I was too sick and exhausted to live my life.

This post is a reminder to keep fighting.  Health is a wonderful thing we often take for granted.  It is also a reminder to challenge yourself, get out there and do something fun.
I may have a little trouble walking tomorrow (I’m a smidge out of shape after 10 years), but you can bet your ass I’ll be back in that studio leaping, dancing, and being me.

Can you believe it has been 2 years already since I had my jpouch takedown on Oct 22nd, 2007?  So much has changed in my life and our life that I can’t express how great it all been.  Below is a recap and new update on how things are:

FIRST - After 15 years together Megan and I were married in a private ceremony on Saturday, Oct 24th.  We had a quick ceremony in a beautiful park in Georgia.  A friend of mine from childhood lives in North Carolina with his wife came down to go see a show with us, and learned they would be our witnesses.  It was all planned in less than week (although the talk of marriage has been many years in the making).  Our marriage is bittersweet because it is hard to celebrate our marriage when our gay and lesbian loved ones are unable to have the same civil rights to marry their same sex life partners.

And below is our wedding video.  It took 7 mins. and unfortunately, it was really WINDY, so the sound on the video is pretty bad.  But you can hear parts of each of us and our vows to one another.

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SECOND - I’m healthy!  I AM  healthy!!  Really nothing much has changed about my physical look (scars) and how my body feels andacts fromthe 15 – month jpouch update.  Although, below is a recent photo of what my scars look like, I know some of you have asked how they look now. Look pretty good if you ask me :0  I might be bias though because I’d be willing to look like anything as long as I’m free of UC.   I’m able to do everything and have no limitations.

• My body feels strong and I have good stamina.
• My weight is 141 pounds (stayed around 120 when I had UC, worst was 100 pounds). This weight feels good, I feel like I look full and healthy.
• BMs are around 8 per day. I do wake-up a minimum of once a night to use the bathroom and sometimes twice.
• I haven’t been taking immodium or metamucil lately.  I just get lazy and don’t think to take the meds. I do have more formed and less BMs if I use those products.
• Very little butt burn, but sometimes do have itchy butt. Cream cures that up.
• Never have urgency.
• Never have accidents. No leaking.
• Sometimes I do feel like I get dehydrated even when I’m drinking enough.  I try to mix up my water and electrolyte drink to keep that from happening.
• I have had 2 rounds of pouchitis in 2 years. It is no fun but cipro clears it up quickly for me.
• I eat everything, I have no problem with food.  Although, the better I eat, the more consistent and formed my BMs. If I eat junk, my body will let me know.

THIRD - Megan, Katie and I will have been in Athens, Georgia for 1 year in December! Can you believe that?  Megan is enjoying her position as Assistant Professor at the University of Georgia.  She has had lots of opportunities to thrive in her work interest.  Here is an article in UGA Red and Black Newspaper about one of her students project.  The picture above shows Megan with the 6 other professors selected for the 2009-10 Service-Learning Fellowship.  My work is going well, I’m doing finish carpentry for a contractor in Athens and enjoying tht. It is hard here in the construction industry because the market is really flat due to the economy. 

Katie is doing well. You can see in her photo above that she is living a dog’s life. She sleeps, plays, loves, eats, and hangs outside. She really loves the back porch, and she has great windows she can see out of.  We think she is about 9 yrs old now and her joints have been showing the age but she is healthy and happy.

Thank you to everyone for all your support over the years. A special thanks to our family and friends and of course, to the wonderful community over at www.jpouch.org .   We are living happy and healthy and thankful for everything that the jpouch has given us. 

Jason PA

If you are not familiar with  Jason PA, you definitely need to watch this video.  Jason PA is 38 year old State Trooper in PA. He had a jpouch and it failed and he is now living a healthy wonderful life with a permanent ileostomy.  He participated in this great video about made a video about Living with an Ostomy.  For those of you who are facing life with a perm ileo – Jason PA is a wonderful source of inspiration.

It’s been some time since I posted an update here. Exciting things are beginning to happen for me. In just a few weeks we will be coming up on the year anniversary of the creation of my j-pouch. After my takdown surgery in December, I had been having to have dilations on a pretty regular basis due to scar tissue forming around the opening to my pouch, but guess what? The dilations are no longer needed (after a total of 11 I think)! While I still have to do enemas to treat the UC that remains in the small part of my rectum that is left, the enemas seem to be doing their magic. I also have to take Cipro on a daily basis to treat chronic pouchitis. These things are all totally do-able for me. I feel like life is “normal” again!

As you may recall if you read my story in the past I was diagnosed with a severe case of UC (toxic mega colon) in 2008 when I became pregnant. During my lengthy hospitalization, we lost our daughter and I gave still-birth to her at five months along. Just a couple of weeks later my colon was removed. The most challenging time in my life, no doubt. But here’s where it gets good folks! I have been healing. I feel good, and my husband and I have started the adoption process! After weighing the pros and cons of getting pregnant, we decided that adoption fit us better. (Plus, I can’t go off the Cipro without getting sick, and you can’t be pregnant on it – though there may be other options, we didn’t explore them.)

While I know patience is a virtue I will be embracing as we go through the adoption process, I get so excited sometimes I can hardly stand it! I cant’ tell you how wonderful it is to feel HOPE about the future again!

Time to boycott the Plaid Pantry, whatever that is. (Is that like a 7-11?). Reading through posts on the Consumerist weblog, trying to decide if I should subscribe to its RSS feed, I came across this article about a fellow IBD sufferer who was denied access to a bathroom. As a result, she pooped her pants.

Granted, it is an “employee only” bathroom, but hey, what is the world coming to when someone poops their pants because someone else is worried about… er… what? What, exactly happens if you break the rules and let a customer into the bathroom? You get fired? They steal toilet paper? Fine.

I would gladly get fired for breaking the rules if it were in the name of humanity, decency, or any of those other words that end in a ‘y’ and connote positivity.

Here’s hoping the next clerk is a nice one.

J-pouch.net readers,

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/

People always used to give me strange looks when I would tell them that it has been 485 days since my first surgery. I’m no “rainman” or anything, I just use a bunch of different forms of technology to keep track of my health. I’d like to start sharing them with you. Starting with the first one, well, aside from graph paper the first one: “days since”. It’s a “module” for Google’s personalized homepage, igoogle. You can add the module by clicking ‘add stuff’ from igoogle’s page or by visiting the author’s site here.

As you can see by the screenshot, it’s really simple. Sometimes simple is better. Most of the time simple is better. I like watching the numbers go up, and this helps me feel better too. Other possible uses for this could be: tapering on Prednisone, keeping track of how long it has been since your last flare, or just remembering when you last mowed the lawn!

I have a bunch of these technology tips, so check back for more of what I call “colitis by numbers.”

James Orr, 66, was on trial in Cincinnati, Ohio yesterday for robbery and kidnapping when he disrupted the hearing with an extreme act of grossness. Orr reportedly asked his attorney if he had any food. When the attorney told him no, Orr apparently put his colostomy bag on the table, squeezed out the contents, and then either ate, or pretended to eat, his own feces. The Sheriff’s deputy cuffed him and removed him from the room which the judge then closed for cleaning. Orr’s trial will continue next week. [ Link ]