Post-Op/Pre-Op Op Ed

by on Tuesday, April 2, 2013 1:16

File this entry under: Coping/Support

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” since December, and got noticeably worse by February. Cue MRI, CT, ER visits re: fistula. By March, it was clear I had to move up my exam under anesthesia (EUA) with Dr. Remzi at Cleveland Clinic.  Travel arrangements were made and I went up with my mom for pre-op appointments on March 20 and the EUA on March 21. My first appointment on the 20th was a barium vaginal x-ray (complete with barium vaginal goo) to try to locate the fistula. After getting pumped full of this stuff, being on my period and it leaking out all over the x-ray table and on me, I got cleaned up, flipped over, and did the other end. The enema test didn’t clearly reveal a fistula, rather a bulge at the connection/stricture site. The post-enema poo was just…EPIC. I don’t know if my pouch has ever been empty before. OMG. I was relieved but exhausted. I drank about a gallon of fluids to regain clarity and headed for the lab to get blood work. After that, I saw Dr. Remzi’s NP, Vicki, and Dr. Shen sat in on that appointment. We discussed surgical options, non-surgical options, IBD treatment, etc. When I got to the EUA the next day, I was more anxious that I’d let on. I hadn’t been sleeping much since I found out about the fistula-maybe two hours a night. I was also excited to have a great distraction in my new position as Development Director at Girls with Guts (GWG). After getting recently fired, it was a savior to me mentally to have something to do that I was passionate about and also really good at! So, I kept my brain occupied with exciting/positive things for GWG, and tried to be patient with my own health. When I got to Cleveland and heard every physician I saw say how much they “hate” fistulas, I got kinda nervous…

I cried a lot that week. I think I was exhausted and overwhelmed, and it was truly cathartic. When they wheeled me back to the OR, I just thought, “How is this happening to me again? How am I doing this and not completely falling apart?” I prayed, I took deep breaths, I joked around with the nurses and the team of doctors. I made BFF’s with the anesthesiologist all the while wondering when I was going to get my freaking anti anxiety meds!!! They juiced me up right before Dr. Remzi came in. I dunno if it was the drugs, but his voice sounded incredibly deep as I looked up to him with hopeful eyes and he explained what he would do while patting me and saying, “I will take good care of you.” When I woke up, I pestered the nurses and staff for information about what was discovered. Knowing I’d remember only portions of the answers, I requested pen and paper to record all of my inquiries/answers and before I knew it had 5 pages full! Mom and I went back to the hotel, I slept, had dinner, slept some more. I’m happy to report I’ve been sleeping well since the surgery.

Pre-Op

So what happened? No one got a visual on that sneaky fistula, which is good? But they still can’t rule it out based on my symptoms of air and off-colored discharge.  Dr. Remzi said what I already knew-that my pouch was not properly constructed. Dr. Shen told me this back in 2010 when I first went to see him, but with the help of his “bag of tricks” I was able to postpone a reconstruction for three years. I was the healthiest I’d felt in years. Although I was SURE I was having a flare when this all started up in December/January of this year, the EUA proved otherwise. My IGG4/Crohn’s was in remission, it was my pouch causing all that pain, swelling, and nausea. That really hit home for me and made me realize that I have to get this sucker repaired. That’s not to say I’m looking forward to the two surgeries required to reconstruct it. I’m not. I am not excited to devote a year of my life to surgeries again. I’m not excited to have a year for my pouch to adapt again. I am kind of weirdly excited to have an ostomy again because I can get some fab Vanilla Blush goodies. The thing I’m wrestling with the most is, do I try the J-pouch again? Do I get it fixed, have a temp loop ileo for 6 months, then have takedown? Remzi has an 85% success rate with this surgery, but let’s remember how I’ve been in the 0.6% before…Still, is it worth a shot?  The other option is just to scrap the whole thing, get a permanent ostomy, and get rectum and anus removed. I have friends who have opted for this route, but both of them still have some problems. If I could just go back to an ostomy knowing it would fix all of my problems, I’d do it in a heartbeat, but as with all things, there’s no guarantee. I have no problems having an ostomy. When I had the colectemy and the end ileo when I was 22 or so, I had major doubts about proceeding with the rest of the surgeries because my quality of life was so much better. I’m happy with myself; an ostomy doesn’t change that.  The only issue with going directly to the permanent ostomy and having rectum, et al removed, is that there’s no going back from that. In an effort to not “burn any bridges” my gut is telling me to try for the reconstruction. Still, I’m tired. I’ll be 30 in less than a week, and that marks 15 years with IBD.  It’s been basically non-stop with disease activity/surgeries since diagnosis. Is 85% good enough to put myself through more surgeries?

Again, I don’t have MUCH of a choice. Of course, I always have choices-how to react, which surgery to do, but whether or not do so SOMETHING, isn’t really an option now that I’ve seen how poorly this sucker works. I can’t go on living on pain pills looking 5 months pregnant because I can’t poop. I want to live my life. I want to give myself a chance, and I guess 85% is pretty good.

So, what do you guys think I should do? Try for the reconstruction or say sayonara to this thing once and for all? No guarantees with either, but one option presents one less bridge to burn.

Update: Guys. It’s THREE surgeries. Not two. :( First is to give me diversion or  “loop” ileostomy. Second is reconstruct pouch. Third is takedown. BLAH! I’m grumpy now.

FML(A)

by on Monday, March 4, 2013 3:13

File this entry under: Coping/Support

 

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 last night because of pelvic pain and swelling accompanied by bad nausea and shaking. After ER doc determined that J-pouch=several surgeries, total colectemy and that total colectemy=NO appendix, he ordered pain, nausea meds, and a CT. CT scan showed Crohn”s flare (no surprise there) and my uterus is inflamed because the fistula. Seems the shit tunnel is active after all. On several strong antibiotics to prevent infection/sepsis and waiting to get in earlier to Cleveland for surgery. Side note: Dr. Shen is the best! He talked to my ER doc last night who was lost in the J-pouch/Crohn”s weeds and told him what to do.

Your fistula is here…

Gave me his cell on a Sunday night so he could help me out. What a guy!!
Tindamax AND cipro for now. Trying to get in to see Remzi sooner but casino online when I called the scheduler and told them Shen wanted me in this week she let out a big laugh. That”s a good sign, right?
Oooh, and I just got fired for being sick. Again. Good times. Too small to be eligible for FMLA.
Surprisingly, don”t feel as bad as I thought I would. Just tired and sore and very swollen in my abdomen/pelvic area. Don”t think it”s hit me 100% mentally.
But have I told you what a great support system ya”ll are? As my friend, Casey, would say, “You get a gold star.”
xoxo

The Architecture of my Ass

by on Monday, February 11, 2013 1:46

File this entry under: Coping/Support

Hello!!!  fellow J-pouchers.

http://www.youtube.com/watch?v=K41r5eD0iXM
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.

Fear is a Four Letter Word
!@#$&!*&%#   

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 online casino australia 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

Where it Belongs, huh?

by on Wednesday, January 23, 2013 9:25

File this entry under: Coping/Support

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, fumed, and snarked back.  If not, let me be the first to offer you this:

Bathroom bill ends up where it belongs – down the drain

As I said on my personal Facebook page, this type of pronouncement brings out the advocate in me.  Not the angry, “it’s not fair,” advocate, the “I’m going to educate you and hope you have an empathetic bone in your body,” advocate.

Here’s my e-mail to Ms. Dougherty:

Ms. Dougherty,

As a young woman who was diagnosed with Inflammatory Bowel Disease (IBD) at age 16 (now 30) and has had over ten surgeries to either remove, reconstruct, untwist, tack down, or stretch my intestines over the course of my diagnosis, I seek both to understand your article, and to attempt to educate and inspire empathy in you and your writing.  Unfortunately, as you said in your article, this problem is rare compared to many more publicized diseases.  I will go into graphic details so you hopefully get the picture.  When I was 16 years old, making a scrapbook for my WWII hero grandfather for his birthday I had the sudden urge to use the restroom.  When I stood up to flush the toilet, I noticed blood running down my leg.  This was not menstrual blood, it was the first of many times I would defecate exclusively blood and mucus in my life as a Crohn’s patient.  A year prior to this, I was taken to the ER by my director-of-the-state-Republican Party mother who carried me by sheer will and determination after an evening of ceaseless, uncontrolled blood-and-mucus-diarrhea and vomiting.  I cannot accurately represent the stabbing, writhing pains of the bloody and ulcerated intestines of an IBD sufferer.  I can tell you that I have prayed for death in my bathroom floor, been unable to eat, been hospitalized more times than I can count, taken a plethora of dangerous drugs, and soiled myself regularly in my 14 years of this experience. The Crohn’s and Colitis Foundation of America (CCFA) estimates that approximately 1.4 million people are diagnosed with IBD.  (http://www.ccfa.org/what-are-crohns-and-colitis/). On a good day, when an IBD patient such as myself is not hospitalized, having surgery, or bedridden, we occasionally like to get out and stimulate the economy.  On more than one occasion I have politely asked (and waited) after presenting my “I can’t wait. I have IBD” bathroom access card to use a facility.  Thankfully, most people have been accommodating and understanding to me.  Those who haven’t were after the fact because they got to witness IBD in action.  While soiling yourself in front of a group of strangers may seem like small potatoes to you, it can be emotionally devastating to patients who are trying their damnedest to live a “normal” life.  It’s not that we don’t want to hold it. It’s not that we want to inconvenience anyone. It’s that our bowels do not function as yours do.  It’s that, I don’t have a large intestine (colon) and that several surgeries and the disease itself do not allow me to hold my bowels.   (I have a J-pouch, not an ileostomy.) I am an attractive, employed 30 year old woman who regularly soils herself.   While I have been able to successfully deal with this and integrate it into my life, become an advocate and sit on the board of many IBD-related charities, younger patients often have a harder time shrugging it off, as the boy you mentioned in your article probably does. These diseases often become active during teenage years, and I hope that you can consider how this might be especially embarrassing to a young person who besides having the misfortune of dealing with a painful, debilitating, life-long disease, would suffer slightly more emotionally if they publicly soiled themselves in a group of “friends” , than say, a seasoned veteran such as myself.   While I understand your opinion that any store owner should have the right to deny restroom access to a customer, I feel you would change your tune if you had a complex and life-threatening autoimmune disease or loved someone who did.  
I cannot hope to illuminate my condition for you in an e-mail, but I assure you that patients like myself, are doing exactly as you suggested and launching campaigns for awareness, or are privately e-mailing reporters to provide a patient-perspective.
My question to you is, why are you so emphatically against allowing a sick person access to a bathroom? As an attorney friend of mine commented, “I could think of a couple of legitimate legal reasons, which I supposed would be the crux of the article, not ‘who needs more laws, if you educate the public, they will do the right thing’.”  The only reasons you list are your disgust for “another law” and a scenario where a salon was robbed.  My feeling is that if you have experienced these diseases first-hand as a patient or caregiver, you might better understand a patient’s desire to have access to a restroom by presenting a document that proves our need.  It just seems like a very strange soapbox for you to stand on, so tell me: why?
That’s the end of it.  I tried to keep the snarkiness to a minimum.  I fear some may have slipped under my ever-vigilant radar.
So, fellow gutless, what’s your reaction to all this?

My Pouch Runneth Over/Cleveland Clinic, Part Trois

by on Tuesday, November 13, 2012 5:37

File this entry under: Coping/Support

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 appointment since I was 16 were able to leave me to my own devices, now that I’m almost 30 (gasp!).  I put on my big girl Depends, and flew up with friend and fellow colon-be-goner, Casey.  Casey and I were introduced through Jackie Z.  We initially met up in Big D, where we both reside, so I could give Casey some info about Cleveland.  Then, low and behold, we bonded, like woah.  She’s potentially sassier than me, a talented artist and do-gooder. And she has no colon.  She’s quickly become one of my people and she was an ideal butt-buddy travel companion.  We were both kind of amazed to travel with another sicky.  Much like I felt when Jackie Z. came to visit me in Big D, we were all, “OMG, you have to poo right now too!?! That’s awesome! Let’s go together!” Who would think that simultaneous, frequent defecation could be that profound a bonding experience.  But, having someone understand you, not feeling like a burden, just one of the crowd, is huge for the gutless/autoimmune ridden.  We napped when we weren’t getting poked/prodded/examined or told we had some rare-ass disease and fit in fun when we had an hour to kill.

We left Monday for our flights to Cleveland.  Two stops to be exact.  I was fasting/doing clear liquids that day as my J-pouch scope prep.  No laxatives are necessary because as soon as I deprive my belly of food, the bile acids go berserk and I have to poop all the time.  We flew Southwest which is traditionally known for their laid-back flight attendants who aren’t robots and oft have a sunny disposition.  For some reason, passengers, flight attendants, pretty much everyone on the plane but Casey and I were in grumpy moods.  We were all, “Hey, we’re super excited about going to get tubes with cameras shoved in every delicate orifice, what’s your problem?”  The later connections=mood improvements, which was good because I almost had to fight a flight attendant who wouldn’t let me go to the bathroom.   When I asked politely to go after my sprint to the lavatory and was denied, I said, “Well, I honestly can’t hold it. I have Crohn’s Disease.” His response, a snarky, “I do too,” with an expression that implied, “I can wait, then so can you.” OR, “I don’t care what made-up disease you have, I’ll just say I have it and see if you back down.” MY response, a pleading, whispered, “Well, then you know I’m about to s&!# in my pants.” Doors opened, seas parted after that comment. So maybe he had Crohn’s, maybe he didn’t, but that statement worked and I didn’t have to whip out my handy-dandy, official “I have to crap more than you,” IBD medical alert card. He apologized profusely when I came out looking paler than when I entered and I happily forgave him.

On the second leg, we were seated by a super nice man from Akron who talked about his daughter’s ailments and surmised that Casey and I were traveling medical comedians.  One of our favorite phrases from the trip:  We’re here all week.

We landed around 8pm and we were pretty tired.  We checked in, Casey napped, and I had some French Onion soup broth for dinner.  I was rarin’ to go the next morning although I was somewhat concerned if Dr. Shen had made it back from China the previous evening.  (I knew this because he e-mailed me five times while in China to let me know he was there, confirm Casey’s scope prep, etc.) Who does that!? That’s just Dr. Shen.  He does it all himself, and is my J-pouch Jesus.  After we checked in, a worried Casey held all my things in the waiting room, I got an easy IV (only at CC!), met my nurses (Irena & I can never remember the other one, I blame Versed.) Anywho, they are ALWAYS my scope nurses, they are so sweet and I lurve them.  They wheeled me back, I saw Dr. Shen at his computer in the operatory and said, “You got a hair cut!” He said, “Yes, I have to try to look younger.” It should be noted that he looks no older than 37, but most certainly is based on his medical training.  We chatted a bit about how I was feeling, then more polite small-talk, (as feels appropriate before someone shoves a camera up your ass).  I asked him if China was work or pleasure and got the answer I expected, “It was both…This is Dr. ___ from China.  She is here studying with me.” He’s had docs from other countries studying with him every time I’ve been.  Awesome! (I get really excited about IBD and J-pouch education.)   He went over my case history for their benefit, “Autoimmune pouchitis, history of UC/Crohn’s, efferent limb, stricture, drug-induced Lupus from Humira.”  Then he told me he’d discovered yet another form of IBD.  This one is called NoD2-associated autoinflammatory disease, and is genetically similar to Blau Syndrome, a rare childhood disease.  He mentioned my skin rashes that preceded drug-induced Lupus and asked me to send him pictures of the rashes when they happened.

After that, I interjected, “Dr. Shen, I’m supposed to tell you that my mother says, ‘Hello, thank you’, and she loves you…And I love you too…” He giggled and asked, “Liz, are you youngest in your family?” I replied, “Um, yes…why?”  His response, “Because I can tell.  You a princess.” Then all the nurses and I cracked up.  They said he says the same about them.  We then talked about the lecture he was giving later that week at the annual GI Update: Treatment of Special Cases.  All the nurses talked about how much they wanted to go hear it.  Enter more medical small-talk, then I got my Versed+Fentanyl cocktail, coughed and surrendered. I could hear his notations, but I made an unconscious effort to not rouse myself and look at the screen like I did last year after I saw the blood and ulcers on the screen and flipped my shit. There was a level of anticipation that I didn’t have last year, however.  I was expecting to be in a moderate flare as I’d been having night-time incontinence, incomplete emptying, etc.  I heard him say “stricture” and knew that he was planning a balloon dilation if I had one based on our pre-drug convo.  All this before 10am.  Who needs coffee?

 I guess all the blood and mucus I’d been harboring for a year could finally make an easy exit (and was no doubt “stirred up” with the scope, biopsies, etc.) because when I went to the bathroom after I woke up, this is what I saw:

Enter disclaimer here: Beware! Graphic photos of scope results, and a picture of my bloody mucus in the toilet follow.  (Notice my nice TP nest.)  If you are squeamish, easily offended, two things:
1) Skip this part.  Close your eyes and scroll down really fast!
2) What are you doing reading my blog? Have we met? 😉

But seriously, I think it’s important for people to see what we go through, for other IBD/J-pouchers to see they aren’t alone, and for someone to document all this.

Who’da thunk I’d be a bowel reporter in my off time? Here you go:

Post-scope goo

Liz’s Guts 2012

Anywho, I am a blast post Versed. Casey was SHOCKED! She was like, “Um, I’m not going to be like this, but party on, Wayne.”  So we went to Au Bon Pain, got some safe post-scope noms, then killed time on the mall side of the clinic.  There were some cool art pieces, and being the art nerd that I am, I wanted to take a gander.  Here’s a pic of me REALLY enjoying the art in my goofier-than-usual Versed haze:

Weeeeeee!

After that, we made a pass through the fancy clinic shops to kill time before my appointment with Dr. Shen.  Exciting purchase:  I bought a bra and got $10 off because I voted!

My appointment went something like this:  We confirmed via scope that I was in a moderate flare of mystery IBD.   There were ulcers, there was blood, there was mucus, there was inflammation.  He asked if I was concerned about the ulcers and inflammation to which I questioned, “Are you concerned?” He said, “No, because it look the same as last scope.  If it was worse, I’d be concerned, but it stay the same.”  I agreed.  He recommended I start a course of Entocort, which I took after the Crohn’s diagnosis.  My mama reminded me it gave me killer headaches for a while, but as with everything, Dr. Shen involves me in the decision to put steroids into my body vs. “you must take this.”  He suggested I try it for two weeks and if I can’t tolerate it, we’ll try treating with antibiotics.  But, I’m gonna try to tough it out.  Steroids work really well.  It’s not Prednisone, in fact the side effects are very mild comparatively.  Also, I’m not going to stay on it forever.  So, that’s our game plan.  That constituted about 10 minutes of the appointment.  The remainder of the half hour to forty five minute chat was me quizzing him about this new form of IBD, and asking a few other questions related to studies I’d read in GI news.  As always, he humors me and you can tell he loves that I ask these questions and have a genuine interest.   Last year he told me pre-scope that I needed to go to medical school.  If I thought my guts could handle the stress I totally would, but I know they totally can’t, so enter my plan for advocacy/chronic illness health counselor.  He knows I blog, he knows I send lots of patients his way.  We talked about my meeting Casey through my advocacy efforts to which he commented, “You are very popular in those circles.”  I smiled and said, “So are you.”

Man, I really wanted to go to that lecture he was giving Friday…

Eventually we made it back to the hotel and rested.  After that, we sauntered around the corner to 4th street which is a pedestrian-friendly food and bar area.  We had a delish dinner at Chinato, and we may have picked up cupcakes prior to that. :)

Wednesday, Casey had clinic appointments with a surgeon Dr. Shen recommended, Dr. Hull, as well as a stoma nurse, Crina. That was a pretty intense appointment as Dr. Hull varies between motherly petting and surgical seriousness.  Casey and I like to diffuse awkward situations like getting your stoma and rectal cuff examined by making inappropriate jokes.  Dr. Hull seemed to enjoy it at times, but had no problems telling us to stop when she needed to get serious again.  Casey got validation of her stoma pain and Crina, who is quite possibly the sweetest woman alive, was able to fit her with a superior bag.

That appointment lasted an easy hour and a half and before we knew it, we were waiting for Dr. Shen with his super fun intake nurse, Betty.  We reviewed Casey’s symptoms again, scheduled tests, and got referrals to other specialists at Cleveland.  Dr. Shen helped me schedule her with the surgeon, stoma nurse, and for scopes and clinic appointments with him, but with his and Crina’s help, we were able to get her in to see three other docs while we were there that week!  This is why Cleveland Clinic rocks-efficiency and awesome staff who care and make things happen.   When we left Casey’s Ipod charger in the clinic and completely forgot about it, Dr. Shen e-mailed me and saved it for us.  This is the e-mail I got: Casey may leave her Ipad power charge in the clinic.
I have it…

I love him.

Needless to say, Casey got the short end of the probe this week because she got stuck in three holes and had an esophageal manometry test.  I’m so glad we were there together to be each other’s support and comic relief.  By Thursday we were infamous with the staff.  “Oh hey guys! How was the mall? Did you get some shoes?” or, “Where’s your friend?”  Our usual response:  “Don’t worry, we’re here all week.”

By Friday we were getting worn down, but as I mentioned, we were good about, “Not overdoing,” in my mother’s wise words.  We napped. I worked out in the gym some and did yoga in the room, all the while preaching to Casey to, “Drink more water! Do yoga! Vote!” Side note:  It was pretty cool to be in Ohio on election night.  And, that’s all I’m saying about the election!  My political blog is purposely non-existent.

Friday Casey got worked in with two doctors that were on her recommendation list, but first she had the esophageal manometry.  I was there to hold her hand and lordy loo, it did not look fun, but she was a trooper!  The aforementioned CC efficiency allowed us an hour before we needed to leave for her appointments in the ‘burbs, so we called our wonderful driver-for-the-week, John, and asked if he could drop us off for a quick walk through of the West End Market.  I nommed baklava, crepes (so excited, I love crepes)

Crepe noms at West End Market

and got a few goodies for stockings. (Be excited, mama!)  Then we drove out to the ‘burbs for an appointment with a pelvic floor specialist who rx’d probiotics and yoga!  When the word, “yoga” passed his lips I let out an exclamatory, “YES! Yoga!!! YES!!!!” I hate to say I told you so…

Then, back to the main campus for her last appointment.

We had another hour to kill before we saw the last doctor and decided to head back over to the shops.  On our way across the skyway, we passed the Intercontinental Hotel on Campus.  Casey stopped in her tracks and said, “Liz, this is the Intercontinental.  This is where he’s doing the lecture.”  Angels came down with harps and horns, and when the beautiful music of epiphany ceased, we walked up to the front desk to ask if Dr. Shen had spoken yet.  I said, “He’s our doctor, would it be okay if we went in to listen to his talk?” The ladies chirped a resounding, “Sure! Right through there!” Then the angels came back, played another gig, I ran to the bathroom, dropped my phone in the toilet, rescued it, cleaned it, and hurried into the lecture room.

It. Was. AWESOME! I’m such a medical research nerd, so this was sort of my heaven.  I was taking notes like a fiend on my much-coveted Doodle Pad that we picked up in the CC bookstore for a whopping $2.  None of the other doctors thought twice about our attendance, probably because we were just as interested in the lectures as they were.  The physician who spoke before Dr. Shen was lecturing on the various crappy meds used to treat IBD and the risks and benefits of using them.  He spent a good amount of time talking about the statistics of biologics and explaining what they’ve learned since the initial research trials that earned them FDA approval.  The stat that stuck out to me the most was the risk of death in Humira (2% of study participants) and the risk of drug-induced lupus OR, the way it’s worded in the drug literature, “a lupus-like syndrome,” (0.6%).  I knew these statistics before I heard this lecture because I was scared sh!tless of taking biologics and did every possible bit of research, including reading the prescription inserts forward and back before surrendering to the needle.  My dermatologist here in Dallas was one of the doctors who did the research studies for Humira and when we reviewed my health history and the theory that it had caused drug-induced lupus he asked, “Do you know how rare that is?” My response, “Hi, I know we just met, but I’m Lizz, weirdo medical wonder.”  But, seeing those percentages side-by-side, I realized it was more likely that I would die than get lupus from the drug.  Wow. Who would have ever thought I’d be glad for lupus!  (Enter another disclaimer: I’m not poo-poo’ing Humira or suggesting that others not take it. It’s a great help to many people and was to me for a while.  I am simply reporting on my experience and the theories of my physicians, and restating the study’s statistical information. The decision to take any medicine with a black box warning should be made carefully and by a fully-informed patient.)   After that lecture, Dr. Shen gave an interesting presentation about the use of endoscopy as a method for treating stricture, pouch sinus, and fistula, and discussed its benefits as a preventative of more invasive surgery.   I’d had my stricture dilated during my scope earlier that week, so I was a live, easier-pooping example of its benefits.  (My butthole is now a loosy goosy 18mm, thankyouverymuch.)

I left before the Q&A session because I wanted to be present for Casey’s last appointment.

Hark! The 48th Annual GI Update!

Enter more, albeit less-invasive tests, more theories, more suggestions, then more blood work.

We did a quick overview of the trip after her last trip to the lab; what we’d discovered, what we hadn’t. The good, the disappointing, but we decided there and then to focus on the good and make a concerted effort to involve the easy suggestions in her life like probiotics, yoga, stress reduction.  It was one of those revelatory moments where you have to surrender the victim state-of-mind, and become a warrior who chooses to focus on the positive and make the changes you can to improve your quality of life.  It was one of the, “Yes, I want a name for what I have, but I realize that just because there’s not a name for it yet doesn’t mean it doesn’t exist, and it doesn’t mean that my life is doomed, it means I get to choose how to react to it, and I choose power.”  Kind of awesome to be a part of a moment like that.  There was lots of love, support, and friendship, and that makes me so happy.

So, the take-away:  I tested positive this year for Igg4-associated autoimmune pouchitis this year.  I may have the 2.0 version as well.  Yes, I’m a research project. Yes, I’m still technically sick, but I choose to be thankful instead of bitter. I choose to be grateful that I have the ability and the opportunity to be treated by one of the best physicians in the world.  I am blessed to be able to share information with him, and then with others who may not have the opportunity or ability to see him.   Whatever stack of cards was dealt to me, I choose to use it to help myself, and try to help others.  This is why my pouch runneth over.  It also quite literally runs over when I crap the bed sometimes, but I choose to laugh it off, recognize the symptom needs treatment, treat it, wipe my ass, and go on with my life.  I choose to listen to my body when it says, “Enough, Liz!” and I take each opportunity for fun. I choose to laugh at my butt disease, but take it seriously.  And I’m so happy I do.

I love all of you and I hope you love yourselves enough to let the anger go and empower yourself.   Jpouch.net is here to support and inform you in any way we can.  If ya’ll need to vent, there’s a comment section.  If you have questions, there’s a comment section.  I still can’t figure out how to turn on my dang e-mail notifications, but I try to check in frequently so I can answer any questions you may have.

Someday soon, I’ll be official, but for now, thanks for reading.

xoxo,

 

Lizz

Travelin’ Ass/Badass Butt-Diseased Babes

by on Wednesday, October 31, 2012 9:29

File this entry under: Coping/Support

 

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 some dude named Neil Young and another named Jack White.  There were so many good acts, and I have to say, I’m really proud of myself for finally learning how to travel safely and well with a butt disease and a J-pouch.  There was a time after I was first diagnosed with IBD that I refused to let the disease restrict my life,  and instead of adapting and learning how to integrate it into my life, I just ignored it, and pushed harder.   I was also diagnosed when I was a very stubborn teenager, so factor that in.  At any rate, my teenage, “I’m not changing for this disease” philosophy didn’t work out so well.   I went on a school trip to Europe when I was 16, not long after my diagnosis.  I was on high doses of Prednisone and whatever other maintenance drug I was trying at the time.  Probably Asulfazine.  I should note that I only experienced one true and brief remission shortly before I opted for surgery, so I was still technically flaring on this trip to Europe, but I went anyway, of course.  I was passing blood when I pooped, it just wasn’t exclusively blood at that point.  But, by the time I got back, it was.  After trying to do what everyone else in my travel group was doing, I ended up in the hospital for a week or two.  Keeping up physically with my travel companions was something that exhausted my body.  My guts were nice enough to stick it out till the last day, but the plane ride from Heathrow to Chicago was brutal.  I spent it mostly in the airplane bathroom, shitting blood, and probably bile and mucus.  In the brief periods spent in my seat, I tried to hydrate myself.  When we arrived in Chicago, my body was giving out. I went to the airport physician who told me to go straight to the ER when I landed at home.  One of the teacher/tour guides ended up actually carrying me around the airport because I was too weak and dehydrated to walk.  My mom picked me up at the airport and took me immediately to the hospital where I was admitted for over a week.

So, that is travel story fail with butt disease #1. I spent most of my teenage and college years sick, which I admit sucked and sucked big time, but as I mentioned, I was a tad stubborn and soldiered on.  I guess it was the brief remission (1 month exactly) I experienced that inspired me to get on with my life and ditch my severely-diseased and not getting better colon my Junior year of college.  I went to classes  in between the surgeries but I seriously lessened my course load.  That was mature living with a butt disease decision #1.  It was mature and a “win” because I decided to deal with my disease rather than ignore it and pretend I wasn’t sick when I so clearly was.  I finally found a way to do what I wanted (take classes and complete my undergraduate degree) in order to participate in life and reach my goals, I just modified it a little.

So, that’s what I’ve found works best for me as it does for most people: moderation!  Not balls-to-the-wall self-destructive behavior.  I still live my life.  I travel, I work part-time, I volunteer, I do yoga, and spend time with friends.  I am studying for the GRE so I can take it, kick its ass, then slowly but surely complete graduate school.   So, I absolutely have life goals that I intend to achieve and achieve well, I just finally learned how to take care of my body and mind while making myself a superstar.

 

And speaking of superstar IBD girls, you guys know Jackie Z., right?  She blogs here from time-to-time when she’s not running her awesome non-profit, Girls With Guts, or writing on her own blog, Blood Poop Tears.   Girls With Guts is currently partnering with Groupon Grassroots and accepting $10 donations to make post-surgery support goody bags for badass ladies who have just had an IBD-related surgery.  Girls With Guts’ mission is to inspire confidence and provide support for ladies living with IBD.  If you have an extra $10 lying around, go on over and donate to a truly terrific cause.

Keep on keepin’ on!

Lizz

Daunting, Wit, Compassion, Education

by on Wednesday, October 10, 2012 23:23

File this entry under: about this site

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 school English teacher and a professor, and sometimes my students make me wish I had passed away (just kidding). Just now I finally read the wonderful writeup of this site, jpouch.net, over at healthline.com.

A collaborative work of clever and creative writers, J-Pouch Life takes a comprehensive look at life after colorectal surgery of any kind. Full of heart-warming to heart-wrenching stories, this blog is a welcome respite from a world in which bowel malfunctions are considered weird or rare. Click your way through this site to discover camaraderie, understanding, and a hefty dose of humor.

The writers at J-Pouch Life know that post-colorectal surgery life can be daunting, but their wit, compassion, and dedication to sharing their words of wisdom make life more bearable for the rest of us.

This review makes me proud to be part of such a greatly spirited and positively witty community! Keep it up!

It Happens, Everybody Poops, Even Athletes

by on Wednesday, June 13, 2012 21:22

File this entry under: Celebrities

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 resilience of the human body, still others are eerily reminiscent of Colitis. Take a look at this excerpt describing an ultra-marathoner

But the main culprit was this: The moment Moss began to exercise, her body started shunting blood away from nonessential systems, like digestion and waste, in order to feed the heart, lungs and muscles with nutrients and oxygen. This is known as exercise-induced ischemic colitis, and the result is a black, bloody, swollen colon, like the one that now has the attention of Michael Dobson, the director of a colorectal surgery center in Charlotte, N.C., who is holding up a disturbing endoscopic image from The American Journal of Gastroenterology. The owner of this colon, an ultra-marathoner, had denied proper blood flow to his intestines for so long — because of natural, but extended, shunting — that the tissue inside his colon began to die and perforate. An extreme example, yes, but anytime blood is removed from the colon by exercise, as Dobson explains, water and other material that should have been absorbed along the way instead pass rapidly to the rectum. There, spikes in volume and pressure trigger nerves in the sphincter that emit urgent warnings to the brain. In less scientific circles, this is what is known as prairie doggin’.

Even prime time sports like basketball and football have similar stories.

Jesus pooped.

Tim Tebow does too. LeBron James poops. Derek Jeter, Maria Sharapova, Drew Brees — they all poop. Most of these stars will never have a Julie Moss moment or even a Serena Williams scare. And if they did, it’s highly unlikely they’d ever talk as openly about it as Paula Radcliffe does in discussing her own Defcon 1 incident. The British distance runner and Nike spokesperson was four miles from winning the 2005 London Marathon when she stopped suddenly and darted to the side of the course. Radcliffe had been losing time for several miles because of gastrointestinal disturbances — the kind that, according to one study, affect 83 percent of marathoners and that are usually preceded by gaseous outbursts that runners call walkie-talkies.

Link

Jpouch.net – Top Crohn’s/UC Blog Honor from Healthline.com

by on Friday, April 13, 2012 8:20

File this entry under: Crohn's

Hi All,

Recently little jpouch.net was acknowledged by www.healthline.com as one of 11 top Crohn’s blogs on the internet – how exciting!  Check us out along with the other great blogs/websites.