J-pouch Life

I'm healthy & happy!

So my one-year anniversary of my first surgery is about 2 weeks away (December 10th), and I thought I would update everyone. I’m sorry, I haven’t been on this site in a few months, because I now have a 2nd job at a hospital and am very, very busy. I want to start and say that if anyone would like to contact me to talk about how I’m doing and how I handle things, feel free to e-mail me at Booties4986@aol.com.

Everything’s been pretty much back to normal for me, though after all that I suppose I can’t estimate what normal is. All I can say is that I feel amazing, I have no pain, and I feel like the year 2008 was a shadowy part of my life that is now over and I can continue doing whatever I wanted to do before anything happened.

For a little bit in May 2009, I came down with a virus or flu and it caused me to start going to the bathroom more frequently, up to 12 times a day. My doctor prescribed prescription immodium and also Lomotil. Those helped me out alot and I am on the Lomotil til this day. I take about 4-8 pills a day, depending on when I remember it and whether I think I’ll need it. I’ve learned to recognize the pattern of my bowel functions. Since I have the IRA, my digestive tract is much faster than normal people. For instance, it can be as short as 2 hours. This can work out to my advantage, when I know I have something to do on a day, I can plan when I want to eat, so I will be clear and not need to use the bathoom. I also no longer have the urgency I did before and that is a major relief.

I also try to take a fiber supplement once a day, but most of the time I skip out on it because of work schedules. Thankfully it doesn’t make a huge difference for me. I go to the bathroom about an average of 5 times a day. This is on a non-restricted diet. I actually eat whatever I want, and nothing has seemed to bother me. I eat vegetables, sometimes raw vegetables, and I’ve experimented with nut and seeds. They don’t bother me, but they don’t totally digest either, and I feel like I’m just better off being without them.

The one thing about my life right now I wish I could change is the fact that I don’t get to sleep a night through. I notice it on the that I work at both my jobs, because I get more tired. Since I get up about 2 times a night, I never really get to enter the REM cycle of sleep, which is the restorative part of sleep. So therefore, it’s like I start to enter the deep part of sleep, but then get up to go to the bathroom and it really becomes a series of long naps. But I have to say that is a small price to pay for the health I can live with now.

As far as relationships go, I’ve had quite a few attempts since my partner left me right after my first surgery, but none had been successful. I feel it was a mixture of my being nervous about how they would feel about my disease, and also my needing the independence I feel like I lost while I was sick. I have hope that one day something will work out and I will stick around and keep attempting relationships until I can find one.

I had a very fulfilling summer with my friends this year and I have done a lot of stuff since being healthy. It had finally allowed me to get a full-time job and get on with my life. I’m currently looking into graduate schools again (I applied to 10 right before I got sick and had to withdraw my applications when I was diagnosed). I now have the opportunity to achieve what I want, and know that at 23 years old, I can say I survived the disease and that it’s part of my past. I never take for granted the health I have and it will always be on my mind, and something I will never again ignore.

6 Months Post-Op (this picture was taken over the summer)

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 Read the rest of this entry »

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 devastated 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 and acts from the 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 Imodium 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?  Read the rest of this entry »

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.”