J-pouch Life

Friends,

Over the last 72 hours we have been asked for any possible effort(s) to help people, families, and caregivers in Haiti. For now we would encourage our readers to support relief agencies like the Red Cross. Currently it is too early to develop or provide support other than those connected to search, rescue, and recovery efforts.
Please pass this information along to your loved ones and ask everyone to keep this country, their citizens and the rescue efforts in their thoughts.
Thank you.

Eric Mills,

Webmaster, jpouch.net

Not sure what’s going on here, but for the past two years, I’ve had a Crohn’s flare over the New Year’s holiday. Perhaps it’s related to stress from the holidays. Either way, it’s time to make a change. Bahamas next year!
Does anyone else notice this phenomenon? Things are going totally great, then all the holiday stress gets to you and *bam* tummy problems. The good news is, I seemed to get out of it pretty quickly last year, so I’m hoping the same is true today.
Hope everyone has a safe, happy, and healthy New Year’s!

Hey thought I would post an update on how everything is going so far, it has been almost three months since my total colectomy and I am doing great. As for now as I am waiting to return to college in mid January, I am working out at the YMCA 3-4 days a week and just preparing for school again. My life really hasn’t changed that much since the surgery, other than I feel a lot better, I am going out with friends and don’t have any problem wearing my clothes with my bag. I still find it a bit weird going out and meeting new people because everywhere I go people seem to know about what I went through and want to see my bag and my story. And I feel like some people don’t really understand it, like they look at me differently and that it is gross to have the ileostomy. But I guess anyone who really has half of a brain understands that it was a necessary procedure and my life is better now since the surgery. As for returning to college I don’t think it will be that difficult with my bag considering how good I am doing with it. I am majoring in Biochemistry at University of Minnesota-Duluth, I was enrolled for the first week this Fall 2009 semester but became so ill that I couldn’t attend class any more and I had to withdraw and have the total colectomy surgery, since the surgery in the beginning of Oct. I have just been recovering at home. I am able to have the takedown procedure as soon as Jan. but I think if I decide to have it then I would really get out of the groove of school. So I think it is best for me to go back to college in Jan. 2010 and as soon as the semester ends in late May, I will have the take down surgery in June. I will have the summer to recover and get used to the j-pouch which I think will be good since at first I have heard the j-pouch can be different but with time it stretches and my body will get used to it. It really was a difficult decision to withdraw from school and miss this whole semester but I know it actually would have not been possible for me to continue school with the way I was feeling, you can’t function at your highest caliber without your health. It is really crazy to see some how so many people take there health for granted, they don’t realize how lucky they are until something bad happens. Even though I missed the semester and the credits for my major, since the surgery I won’t have to worry about the colitis, I can totally concentrate on school and take summer courses to catch up on my missed semester. Which is not a big deal at all, I am pretty sure I remember hearing that most college students don’t finish they undergraduate degree in four years, so I won’t sweat it. It is just nice to have my health back, and I couldn’t have done it without my family and my surgeon.

http://grantsucstory.blogspot.com/

Hey guys-

I just created a blog to be a resource for members of the GLBT community to visit and get some answers on questions that you have been searching endlessly for. I know it’s a very taboo topic, but as a gay man, I would have loved having a place where I can go and ask any questions I want without feeling embarrassed. I have posted on jpouch.net before and got a lot of responses from people thanking me for putting information about being gay and facing the surgery. I have done a lot of research onto the topic and hope to provide some answers and/or comfort to those of you suffering.

http://gaydigest.wordpress.com/

Hi!

We’d love to have jpouch.net give Lisa some great support and go visit her blog and UC to Jpouch Story Lisa’s UC to Jpouch Story .  She has just had Step 1 surgery and on the mend. She is new to the community and as we all know could use some jpouch support.  Meet Lisa in some of the below photos before surgery – we hope to see her in back to happy photos soon after this recovery! Lisa’s UC to Jpouch Story

Well, I know, it’s no fun sometimes, that is, sometimes you have to spend time in the hospital. Hey, we’ve all been sick, had surgeries, or been visiting someone who has. Sometimes the computers don’t work in the hospital, or even on a sunny day at the beach. Now we have a new way for you to get your Jpouch.net fix – we’re mobile. If you have: android, aspen, blackberry9500, blackberry9530, cupcake, dream, incognito, iphone, ipod, opera mini, webmate, webos our site will now dynamically redraw itself just for YOU. Yup, that’s sweet. You’re welcome.

Oh, and I’ve made the comments over to the right scroll so we can all see who’s talking about what. Your comments are what make this site great, so keep talking!

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.