J-pouch Life » Crohn’s http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 Loss & Gain http://www.jpouch.net/2011/12/29/loss-gain/ http://www.jpouch.net/2011/12/29/loss-gain/#comments Fri, 30 Dec 2011 04:09:53 +0000 Lizz http://www.jpouch.net/?p=2680 This is something I haven’t discussed on the blog-I always try to keep it strictly IBD and health-related, but sometimes themes overlap. This year, I’ve lost a lot of people. A lot. The most devastating to me was the loss of my Papaw-the main male figure in my life. The man who taught me how to tie my shoes, taught me the importance of patience, and how to live gracefully with a disability. I lost my Uncle Russ, a spitfire, gypsy spirit like me. I dealt with the cancer diagnosis of my favorite aunt, I saw her lose her beautiful hair and part of her breast, and I saw her survive all of it. I saw my uncle-in-law pass, a humble, kind man who went too soon and I saw his lovely wife continue her life with strength and grace.
The year has been peppered with this, in some way or another, and I’m sure it’s been similar for many of you. Maybe your loss is more direct-maybe you lost your colon. Maybe you lost a relationship or a job because of your surgery or illness. Last night, my cousin lost her dear uncle-in-law. He had a J-pouch, like me. He had Crohn’s disease like me. He lived in Texas, like me. He was in his 40′s and developed terminal intestinal cancer from Crohn’s. I post this not to discourage you, but to tell you that despite all the loss this year, I feel maybe more at peace than I ever have. No, I’m not glad for the loss, or the suffering that likely accompanied all of this, but it reflects an inner strength and peace that we all can conjure when we need it most. I tell you this with the hopes that you focus on the amazing blessings in your life, despite the lack-of-health cards dealt to you. When I think of Uncle Ralph, I am sad that we only e-mailed, that I never got to meet this amazing, funny, charismatic man who managed to hold on to his personality and hope despite his physical misfortune. It’s a reminder to seize the day, to tell the world about IBD, how much it sucks, and how they can help.

If you are dealing with loss, I wish you healing, and if I can help, by listening, by offering advice, e-mail me. If you need to talk about how IBD/j-pouch surgery is affecting your life, respond to this post-let’s get more discussion going! This website is a blessing. It’s something for which I am eternally grateful. Thanks to Mark & Megan for taking the initiative to create something to connect and assist others who have or are experiencing what they have experienced. And, let’s all take a moment to honor those we’ve lost, and to honor ourselves for being survivors.

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]]> http://www.jpouch.net/2011/12/29/loss-gain/feed/ 2 “My Hole” http://www.jpouch.net/2010/08/26/hole/ http://www.jpouch.net/2010/08/26/hole/#comments Fri, 27 Aug 2010 05:20:10 +0000 Lizz http://www.jpouch.net/?p=2516 So, I went to see funny-lady Margaret Cho tonight. If you know anything about Ms. Cho, you know she does some killer, hilarious impressions of her Korean parents, and that she’s a little raunchy. She spent the better part of the evening talking about “her hole.” Her anus, to be exact. She started the show by telling the crowd how she’d lost her voice, had seen a therapist who told her to drink olive oil. This was causing the interesting side-effect of causing her to poo an “olive oil mist”. There were other “hole” related jokes, which I as a Crohn’s/J-pouch patient always appreciate. Not that we are very shy around here, but I realized that I hadn’t yet told you guys about my most recent physical therapy appointment for my hole. As I mentioned in a previous post, the crap-o-gram I had revealed that my anus (hole) doesn’t open properly when I try to poo. It spasms sometimes, which can be really painful, and my surgeon sent me to a very specialized therapist who deals with pelvic problems. She is the loveliest lady, really. She is professional, funny, and warm, and not at all awkward. You know as a GI patients, we are all used to having people’s fingers up our ass. If it’s not a finger, it’s a scope. So, when this lovely lady suggested that a “hole massage” might help loosen up my tense arse, I agreed. I told her I was basically up for anything to avoid another surgery. So, first, she had me get into child’s pose (all my yogis out there know what I mean) and she massaged my lower back, my buttocks, and, the area around my hole. The left side was tight and painful, and the massage did help some. She suggested going into the “inner sanctum” to see if it was more of an internal thing. It was. My hole spasmed on her hard core. She did some internal massage which was…interesting. I think it helped for a few hours or maybe that whole day. It just always feels like there is a pinch on the left side down there-a tightness that I can’t get to relax no matter how much I try.
Anyway, the adventure continues. As I continue to get my butthole molested, let’s hope I see some progress.
What I won’t do for a good poo…

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]]> http://www.jpouch.net/2010/08/26/hole/feed/ 4 Crohn’s…Again? http://www.jpouch.net/2010/08/05/crohnsagain/ http://www.jpouch.net/2010/08/05/crohnsagain/#comments Thu, 05 Aug 2010 23:21:56 +0000 Lizz http://www.jpouch.net/?p=2505 Hi all! So for those of you who have followed my story for the past few months you know there have been many ups and downs.  New theories emerged, the one most perplexing and possibly exciting one being that perhaps I didn’t actually have Crohn’s disease-maybe just a horrible case of pouchitis due to poor pouch function.  Several tests later, and another Prometheus test result just confirmed Crohn’s.  I heard this back in 2006 for the first time, after several post-surgical complications and made my peace with it.  So, to be told that I “might” not have it was sort of annoying, sort of exciting, but I guess in reality, I knew that my luck was just not that good!  So back to Crohn’s disease and back to my perspective that it really doesn’t matter what I have as long as it can be treated.  Treatment, however, brings a whole new scope of problems.  Turns out now that since this is (once again) permanent, and not yet curable, that I have some decisions to make.  I am on tons of meds-weekly Humira shots being one of them, and lots of antibiotics.  I take Xifaxan and am currently taking Augmentin for a sinus infection.  Gosh, it makes me feel SO much better.  Unfortunately, I can’t pump myself THIS full of antibiotics on a regular occasion, so I have some thinking to do…I’ve been going to physical therapy to try to get my pelvic floor muscles to relax so I can poo properly.  If this doesn’t work and things don’t improve (I’ve had mild to moderate inflammation despite being on all these drugs), it’s time to say ta ta to the pouch and HELLOOOO to an ileostomy again.  Don’t mind to go this route if it would help, but my surgeon suggested basically amputating the pouch to do an end ileo and I’m not thrilled at the prospect of losing what little guts I have left.  As you also are possibly aware, I was fired from my job because I was absent a lot at the first of the year due to my ongoing health issues.  Thankfully, I am getting unemployment benefits right now and have my health coverage through COBRA, but neither of those will last forever, so I need a plan.  My mom keeps suggesting disability.  Part of me agrees with her-most of the time I am too tired to do much of anything, but then I think, “but maybe I can get a work from home job!”  I’ve been applying for stuff, but I really need something flexible, and not many of those exist in this economy. Le sigh. What to do?  I don’t want to feel like I am “giving up” on a “normal” life, and it’s just not my style to not work for my earnings, but I guess I need to be realistic.  I just feel defeated when I consider that option. Should I  just bite the bullet and apply for disability?  Most importantly, I have to have health insurance and I don’t think I can find a full-time job that will provide that and allow me the sick leave which I will likely need.What would you do?

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]]> http://www.jpouch.net/2010/08/05/crohnsagain/feed/ 7 “You’re Fired.” http://www.jpouch.net/2010/03/15/youre-fired/ http://www.jpouch.net/2010/03/15/youre-fired/#comments Mon, 15 Mar 2010 20:01:40 +0000 Lizz http://www.jpouch.net/2010/03/15/youre-fired/ Well, this is one of those days that I come here to post and I wish I had a positive, uplifting one for you…perhaps this will turn out to be just that. Today, I was fired from my job because of my inability to come to work regularly because of my disease. Now, my employer is simply blaming it on an attendance issue, but they are all aware that I had a “condition” which was keeping me from working regularly. I’ve been having issues since December with a Crohn’s flare or a pouch problem-my docs and I are still trying to figure it out. I had a barium study done Friday, so hopefully that will lend some wisdom to us on that matter.

I feel relieved, bittersweet, I think. I will miss the money, and some of the work, but it was a horrible environment for me to be in, quite honestly. I loved the people I worked with, but the energy was all stress. When I am completely honest, I just couldn’t do the job because I was too tired a lot of the time when I was there to function mentally. I forget so quickly how much I’ve been through and what my body has to go through to just function every day when I feel well-I work as hard as I can and I see my “old” self come though. However, those days, honestly, kick my ass and I end up having to sleep for 4 days nearly without interruption to recover from it. It’s depressing and frustrating to me that I cannot do certain things that others can, and that’s why I’m really upset. I’m also worried about what my fiance (soon to be husband) and I will do financially, and what I will do about health insurance.
On the other hand, this opens a lot of doors for me. I have more time to help out with CCFA stuff, and to finally make it a priority to find a career, not just a job for a paycheck, that I can do and that I will enjoy.
Life with Crohn’s and a J-pouch is not easy, but I’m glad to have it.

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]]> http://www.jpouch.net/2010/03/15/youre-fired/feed/ 15 Giving Back http://www.jpouch.net/2010/01/27/giving-back/ http://www.jpouch.net/2010/01/27/giving-back/#comments Thu, 28 Jan 2010 06:51:10 +0000 Lizz http://www.jpouch.net/2010/01/27/giving-back/ I think we’ve all been at points of struggle with these diseases where we felt hopeless. For most of us, the J Pouch operation gives us our lives back. It gives us an opportunity to live it. It gives us an opportunity to hope.

I have done volunteer work for the Crohn’s and Colitis Foundation of America for the past six years. My mom told me about CCFA when I was first diagnosed. We joined and I was an inactive member for years (ie: I got the newsletters, paid my dues, but I never got involved.) Part of the reason for that lack of involvement was that I was  so sick, I could barely function, let alone have any extra energy to devote to a charity…even to one that might ultimately help my quality of life.

So here I am today, on the committee to plan the CCFA walk for my Northwest chapter. I’m super-swamped at work, have a full social life, and aside from a minor flare a few weeks ago, I’m doing pretty well health wise. Things on that front are rarely 100% for me, but I am happy and I am thrilled to be able to do something to help others who are suffering now as much as I once was.

For those of you who are able, I urge you to get out and volunteer. If not for CCFA, for another cause close to your heart (or guts).

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]]> http://www.jpouch.net/2010/01/27/giving-back/feed/ 3 The New Year’s Curse http://www.jpouch.net/2009/12/31/the-new-years-curse/ http://www.jpouch.net/2009/12/31/the-new-years-curse/#comments Thu, 31 Dec 2009 23:18:27 +0000 Lizz http://www.jpouch.net/2009/12/31/the-new-years-curse/ newyearNot 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!

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]]> http://www.jpouch.net/2009/12/31/the-new-years-curse/feed/ 10 Just Dance! http://www.jpouch.net/2009/11/10/just-dance/ http://www.jpouch.net/2009/11/10/just-dance/#comments Wed, 11 Nov 2009 04:53:00 +0000 Lizz http://www.jpouch.net/?p=2243 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.

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]]> http://www.jpouch.net/2009/11/10/just-dance/feed/ 8 Plaid Pantry Denies Bathroom to Crohn’s Customer http://www.jpouch.net/2009/09/16/plaid-pantry-crohns-boycott/ http://www.jpouch.net/2009/09/16/plaid-pantry-crohns-boycott/#comments Thu, 17 Sep 2009 04:35:10 +0000 Eric http://www.jpouch.net/?p=2130 Boycott the Plaid PantryTime 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.

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]]> http://www.jpouch.net/2009/09/16/plaid-pantry-crohns-boycott/feed/ 9 Don’t Ask, Don’t Tell http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/ http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/#comments Thu, 16 Jul 2009 02:13:57 +0000 Lizz http://www.jpouch.net/?p=2068 shhSo, at every previous job since I’ve had IBD I’ve been very vocal about my disease.  It was practical because I was sick at the time, and when people asked me questions, the advocate in me burst forth!  Since I’ve been in remission and managed to get a job in Portland, OR in this crazy economy, I’ve decided that it no longer requires mentioning, or for that matter, broadcasting.  I tend to get up on my educational soap box when it comes to IBD, which is a good thing, and something I will certainly continue to do, however, I think many of us have learned all too well that even the most empathetic and understanding employer will, to some extent, always see your disease as part of who you are, and therefore, as a limitation.  I’d rather my work speak for itself.  I’m working as a paralegal, which basically means I do a lot of writing that the attorneys sign their names to.  It’s okay because I adore any chances to write and get paid for it ;) I’d rather keep professional courtesies, well, professional.  I am a very open, friendly person and I definitely let that come out in my job, but I am also trying to work on that part of me that for so long made Crohn’s a part of my identity.  It doesn’t define me and I no longer want it to, so I’ve made a real effort to modify that.  It’s easy to not complain when you are in remission and not suffering or in pain.  So, for the past few weeks, I’ve overheard our secretary talk about her mother’s “colitis”.  I kept my mouth shut until today when another paralegal started talking to her about a friend of hers who had Crohn’s that was airlifted to the hospital.  At that point my IBD alarm went off and I thought, “Okay, I know a lot about this…maybe I can offer some helpful words.”  So, without an intro of, “I have that too!” I just asked if the girl was on any meds.  Sounded like she’d unsuccessfully tried everything, including Humira, which was my savior.  I had nothing more to offer, so I hushed.  The secretary then started talking to me about it more and I said, “I have an interest in GI disorders and know quite a bit about it, so I was curious.”  I was actually able to make some suggestions to the secretary about her mother, she then asked me, “So do you know someone with it?”  My reply, a smile and a, “Yes.”  I then went back to my work.

So what is your policy regarding IBD in the workplace?  It’s certainly nothing to be ashamed of, and I’m oddly proud of it, but I’ve lived and learned and am, for now, deciding to remain a mystery :)

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]]> http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/feed/ 12 Teen Diagnoses her Crohn’s Disease http://www.jpouch.net/2009/06/15/teen-diagnoses-her-crohns-disease/ http://www.jpouch.net/2009/06/15/teen-diagnoses-her-crohns-disease/#comments Mon, 15 Jun 2009 19:54:35 +0000 Megan http://www.jpouch.net/?p=1956 Teen Outsmarts Doctors

Teen Outsmarts Doctors

In a timely fashion to Liz’s post on Lets Just Call it IBD, I just stumbled on this story this morning on the yahoo home page.  Apparently a teenage female had been sick with IBD-related symptoms for many years. The doctors called it IBD, probably colitis. She took tissue from her intestine to her high school biology class and she found signs of inflammation indicated Crohn’s Disease.

Read the full story here: Teen Diagnoses Crohn’s Disease Before Doctors in Science Class

Lesson of this story is that we know our bodies well and we must be active participants in the identification and maintenance of our health care.

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