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Megan and Mark H. Patient Expert

Portland, Oregon
To learn more about us and the other bloggers at jpouch.net, please visit our blog at http://jpuch.net  At our site, you'll find tons of photos and text regarding the journey from living with ulcerative colitis to jpouch. the journey requires surgeries and is often difficult for the... Full Bio
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J-pouch Redo, Part II by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Hey, friends. If you’ve followed my story you know it’s been a frustrating 8 years since the inception of my J-pouch.  A post-colectemy, end-ileostomied 22 year old L ... Read on »
Bad Sick Girl by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Pale, scrawny, and sickly, but still got guts. You guys know I’ve been dealing with diversion pouchitis (DP).  I have to say, I thought I was prepared for DP.  Aft ... Read on »
Day Two: Anti-Inflammatory Diet by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Got up and made the Kale Ginger Strawberry smoothie again. Still tastier than one would anticipate.  Made a water concoction of lemon, cayenne pepper, and fresh ginger-jus ... Read on »
Let’s Try This Again by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Kale vs Ninja Well, kids, my wallowing has come to an abrupt end. I got bored of it and started researching alternatives-both to wallowing and healing.  I ate extr ... Read on »
Bloody Shit. by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health No, I’m not British.  I’m an angry American girl who woke up at 5am and shit blood out her butt despite having an ostomy that’s supposed to be doing my shitting for me.  I ... Read on »
Ask Me About My Shitbag by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Before we get started here, let me offer a disclaimer. I affectionately refer to my ileostomy bag as a, “shit bag.”  My stoma is named STELLAAAAA, but if you ... Read on »
Rock Out With Your Pouch Out by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health So, I had my surgery to create a loop ileostomy to divert stool from my bratty J-pouch!  Pre-op went down Monday, along with some exciting Girls with Guts (GWG) goodness ... Read on »
Frustrating Decisions…And Not Giving Up by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Hi, guys. I’ve officially scheduled the first of three surgeries to re-vamp my J-pouch.  The first is a loop ileostomy that we hope will give my innards time to cool off a ... Read on »
Post-Op/Pre-Op Op Ed by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Post Epic Poo Guys, it’s been a crazy few months. For a while I was seriously starting to doubt the universe and its plan for me.  Things have been “not right” sin ... Read on »
FML(A) by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health   ERrrrrrr.     Hi, all. This will be short and sweet since I’m not really feeling up to amusing gifs and clever puns. Here’s the rundown: Went to ER l ... Read on »
The Architecture of my Ass by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health

Hello!!!  fellow J-pouchers.

When Mark and Megan asked me to be the Crohn’s “expert” on Jpouch.net I was honored and excited because I knew I’d have a lot of material to share with you guys. I knew that although most of my blogs would be about research/living with a J-pouch and/or Crohn’s day-to-day, a few would deal with very personal new disease developments related to IBD. I come to you today with a post about the later.

A lot of my journey with this disease has revolved around fear. Fear of a flare, fear of another surgery or complication, fear of a rare medication side effect. Unfortunately, most of my fears have come true. I seem to be one of the cases that just gets the full gamut of the disease, and good or no, I’ve come to expect complications. When these began after my J-pouch surgeries, I was frustrated and devastated. I’d lived my life as a very sick girl with a diagnosis of Ulcerative Colitis, with an “it-could-be-worse” attitude, my mantra being, “At least it’s not Crohn’s…” So, when I was diagnosed with Crohn’s less than a year after takedown, I felt hopeless. Eventually, I got a grip on it until a few other bizarre surgical complications arose and I had a mini-breakdown. I started seeing a therapist who helped me deal with the fear and paranoia that goes hand-in-hand with chronic illness.  With a new perspective, I trudged on, and my life was more full and wonderful as a result.  I’ve somehow managed to hang on to that way of thinking-Deciding to control my mental and emotional reactions to the deception of my physical body, choosing to be pro-active with regards to my attitude and medical care, and generally,  choosing to deal with my disease vs. snuggling into a heaping pile of denial.   So, when I noticed air coming from my vagina recently, I knew the thing to do was investigate and deal, not dive into the woe-is-me pity party or choose the, “I’ll just ignore this and see if it goes away” route.  I’ve started listening to my body when it tells me something is wrong instead of being a stubborn, stoic, control freak. So, after about a week of this…air passage… I e-mailed J-pouch Jesus (Dr. Bo Shen) and he recommended a pelvic MRI to rule out a Pouch/Vaginal Fistula.  (Here’s where my oh-so-clever architecture pun comes in.)  For those of you unversed in fistulas, they are, essentially, a tunnel from one organ to another.  They are often a complication of surgery or Crohn’s disease, so naturally, they are something that had been on my paranoia radar in the past.  I remember the first time I learned what a fistula was, and what happened most of the time when woman had them (Poo comes out of your V).  I vividly remember thinking, “Oh GOD! I do NOT want that.” Not that I wanted any of the other stuff, but for some reason, a fistula sounded extra icky, to use the phrasing of my inner teenage girl.  Air was something I could deal with, but when it became regular, I knew something was “off” downstairs and that it was time to investigate.   And the weird thing? I wanted to investigate.  While lying strapped down to a plank inside of a tiny cylinder for an hour with a lovely soundtrack of magnets scanning my insides was not my idea of a good time, I knew it had to be done, so I did it.  I wasn’t sure what to expect of my results. Part of me just KNEW I had a fistula way before Dr. Shen was ever contacted to investigate this, and part of me was still hopeful that I just had a magically windy vagina.  (Insert sound of a gusty prairie. Cue tumbleweed.) So, when the radiologist noticed a sinus or fistula I thought, “Well, he’s not J-pouch Jesus…Maybe he isn’t correctly reading my extra-special insides, maybe this isn’t anything significant.”  Yet, when Shen e-mailed me confirming the fistula, I didn’t feel as defeated as I thought I would. Perhaps this calm is what comes from being  a seasoned sicky, but I haven’t cried about it. I haven’t thrown a hissy fit. I’m just, dealing with it. With a lot of grace, I might add!  Dr. Shen is referring me to Dr. Remzi, colo-rectal surgeon to the stars, to perform an investigative surgery.  While I can deal with a gusty lady, I will probably be much less sane when she completely switches careers with my J-pouch, so I’d rather deal with this now than later.  As many a zoning committee knows, it can take years to get approval for, much less build a tunnel or bridge.  Who knows how long this has been going on in my nether regions, but Madam Mayor is gonna do her damnedest to put a stop to the current construction and see that the appropriate repairs are completed ASAP.

I’ll keep you guys posted on the whole affair.  In the meantime you can send get well cards to:

Lizz’s Vag
c/o Lizz’s J-pouch
Fistula Way
Dallas, TX

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Where it Belongs, huh? by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Hi, all. Once in a while, someone comes along and says something that I just can’t ignore.  If you are a regular on the IBD blog scene, you’ve probably seen this, fume ... Read on »
My Pouch Runneth Over/Cleveland Clinic, Part Trois by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health In perfect Cleveland Clinic fashion, it was an exhausting, informative, whirlwind week. Mom and my aunt, who have traveled with me to every damn hospitalization and major ... Read on »
Travelin’ Ass/Badass Butt-Diseased Babes by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health   Wow, where have I been and what have I been doing? Apparently not blogging. Most recently, I went to New Orleans for the Voodoo Music and Arts Experience to see ... Read on »
Daunting, Wit, Compassion, Education by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Hello there people of the J-pouch and pre-post surgery / non-surgery world. My name is Eric, and I have had 5 surgeries for Colitis. I almost died. Now I’m both a high s ... Read on »
It Happens, Everybody Poops, Even Athletes by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health ESPN has an interesting article on professional and endurance (ultra) athletes and their doings of number two. Some of the stories are a real tribute to the strength and ... Read on »
Jpouch.net – Top Chron’s/UC Blog Honor from Healthline.com by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health Hi All, Recently little jpouch.net was acknowledged by www.healthline.com as one of 11 top chron’s blogs on the interweb – how exciting!  Check us out along with the ... Read on »
Something Bit Me in the Chihuahuan Desert, and It Wasn’t a Chihuahua by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health No chihuahuas were harmed in the posting of this blog. Hello fellow colonless travelers! (Really, does that “colonless” greeting ever get old?) I have returned ... Read on »
I Have Crohn’s Disease, and I Have to Poop. by Megan and Mark H. Patient Expert 1 Comment Posted in: Blog Posts in Digestive Health So, friends without large bowels, how are you? What’s new? How’s the plumbing working? Mine’s been so-so lately. I feel like I’ve been on the verge of a pouchitis/Crohn’ ... Read on »
Loss & Gain by Megan and Mark H. Patient Expert Posted in: Blog Posts in Digestive Health 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 peop ... Read on »