J-pouch Life » GI 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 Fear Monger, MD http://www.jpouch.net/2010/11/04/fear-monger-md/ http://www.jpouch.net/2010/11/04/fear-monger-md/#comments Thu, 04 Nov 2010 07:14:10 +0000 Lizz http://www.jpouch.net/?p=2562 Hi, guys!  So, I’m still alive.  I thought I would give you a brief update about how things are going with lupus.  It pretty much sucks.  It’s not like I’m not used to pain and my body doing weird shit, cause I totes am. However,  I am used to it mostly being invisible to the outside world.  Previously, this was something that both pleased and annoyed me, because I could be in excruciating pain, exhausted, but still get the, “But you look so good!” comment.  Well, lupus is very visible for me.  In addition to my freakishly swollen finger joints, I have a rash all over my neck, chest, torso.  I can cover that up with clothes, but it’s spreading to my face! This is forbidden territory, lupus! Stay the hell away!  Anyway, it’s like this scaly, red rash.  Not quite hives, but basically.  Today my eyes started itching so bad I kinda wanted to claw them out.   It feels like there’s sand in them and my vision is kind of blurry.  They are super wattery from all the itching and I’m getting that nice crust around my eyes.   I look kinda shitty, but it finally matches the way I feel!  Like I said though, not sure I like it.  I can be honest with you guys, I’m kind of vain.  I like my pretty, milky-white Southern-belle skin and bright blue eyes.  I liked having the illusion of health, if only for myself.   This scaly-skinned red, crusty-eyed monster is not working for me.

How does the pain compare to Crohn’s though?  It’s just…different.  I can’t say that it’s worse, although in some ways it is.  I could always be mobile with IBD-well, not when it had me bed-ridden, but I could generally haul major ass to the bathroom.  Not so with lupus.  I basically hobble everywhere, grunt or yelp loudly every time I get up or down.  The only way I can sleep is under a blissful pain-pill coating.  It’s basically affecting every other part of my body.  I have had diarrhea, but haven’t noticed much in the way of Crohn’s other than that.  My stomach isn’t terribly painful, but my muscles, joints, and bones are.  Skin, eyes, etc.  It’s just a totally different experience-different body systems, different pains, different restrictions.  I’ve been sleeping a LOT.  The only productive thing I did today, which basically turned out to be a complete waste of my time, was go to see a new GI here.  Now, the term “specialist”…don’t read too much into that, because the last few I’ve had have not known what to do with me.  I appreciate that a lot of weird, unfortunate shit happens to me-hence my seeking the assistance of an expert.  I did admire his bluntness, but he mentioned, more than once how severe and unfortunate my case was.  He said, and I quote, “I live in fear of your situation.”  I’m sitting there, hunched over in this chair, dead exhausted, covered in red spots, thinking, “Are you fucking kidding me?”  Believe me, I am FAR past sensitivities.  I like people that tell it like it is, but really, doc.   No shit.  I don’t need to know how bad I am.  I am completely fucking aware!  I need your help, not for you to state the obvious.   Which, is pretty much all he did aside from some blood work.

Now…on to the GOOD news! Yay, I lurve good news:) So, I think part of the reason I can deal with the crap storm around me is because I have faith and an amazing group of people in my life.  First off, the IBD/J-pouch community.  You will not find more helpful, generous people.  You guys rock!  Second, my friends and family are just so loving.  It makes it a lot easier to deal with this crap when you have a ton of people that truly love and care about you and want you to be better.   I have a lot of people in my corner.   This includes past doctors.  One, and probably my only good GI ever-from Vanderbilt- saw a post about me on Facebook and e-mailed me to see if he could help.  That’s pretty awesome.  Also, a good friend of mine recently saw Dr. Shen at Cleveland Clinic and essentially said, “Liz, you HAVE to see him. I will pay for it if your insurance doesn’t cover it. He’s amazing.  You have to go.” So, obviously that’s super sweet on a number of levels, but thanks to divine Providence or what have you, our new insurance covers Dr. Shen and all docs at CC, so that’s freaking awesome!!!  Also awesome, Miss Jackie Z., fellow jpouch.net blogger, got me Dr. Shen’s e-mail so I could touch base with him, inform him of my history, and schedule any tests.  During this exchange, he decided that I need to be seen ASAP and is getting me in this month!  Another prayer answered.

So, even though things have been sucky and I kinda feel like Goldblum in “The Fly”, I see a light at the end of the tunnel, I see hope, and that’s what I needed more than anything.

AWESOME UPDATE!!!!

At the urging of my GI, I went to a run-of-the-mill Urgent Care Center.  The doctor examined my eyes, rash, etc., gave me a shot of steroids in the ass, an Rx of Prednisone, and drops for my nasty eyes.  When I woke up this morning, for the first time since my last dose of ‘roids, I was not in pain!!! OMG, I cannot tell you how thrilled I was when I stretched out this morning and nothing hurt! All my joints moved with relative ease, but no pain! Ah!!!! I am so excited! Feeling good puts me in the best mood :)

These posts might also help out:

]]> http://www.jpouch.net/2010/11/04/fear-monger-md/feed/ 6 Let’s just call it … IBD http://www.jpouch.net/2009/06/06/lets-just-call-itibd/ http://www.jpouch.net/2009/06/06/lets-just-call-itibd/#comments Sat, 06 Jun 2009 15:15:12 +0000 Lizz http://www.jpouch.net/?p=1929 confused-doctorAfter receiving an interesting letter from my new GI yesterday, I’ve found myself in a rather contemplative mood.  I was diagnosed with unquestionable serious UC when I was 16.  The GI who diagnosed me recommended immediate surgery to remove the colon.  I declined, preferring instead to take meds for years and try my hand at that.  They sort of worked for a while, but a time came when surgery was the only option, so I had a successful 3 step laproscopic surgery.  Many tests were performed before the surgeries to be sure I indeed had UC and not CD.  All supported the UC theory.  Post surgery, I had problems with stricture and “pouchitis.”  However, the pouchitis was above the pouch and unresponsive to antibiotics, so I ended up with a diagnosis of Crohn’s.  This rocked my world, and not in a good way.  Philosophically, I finally came to realize that it didn’t really matter what they called it, it just mattered that my symptoms could be treated enough to allow me a “normal” life.  So, this letter yesterday sort of pissed me off because it said, essentially, that the blood work he performed said that it looked like I had UC.  I thought we’d already been though all this about a billion times…

“The blood markers were more leaning towards the diagnosis of ulcerative colitis rather than Crohn’s disease. How do I interpret these results in light of your history? I am not sure, but these blood markers were chosen by likelihood of association. The way I look at it, if you are responding to current therapy, then we will continue it.”

My favorite part is, “How do I interpret these results in light of your history?” ie:  Um…you don’t have a f&cking colon, how can you have UC?

So much of these diseases are based on location.  Gastrointestinal real estate. Location! Location! Location!!!

So, the more I experience “Life w/ IBD” the more I realize that the experts in the field really know very little about distinguishing these diseases.  I don’t think this means that our doctors are utter morons, I think it means that this disease, UC, Crohn’s, whatever…Let’s just call it IBD, are seriously complex and confusing. Even though the tests they rely on for diagnosis are advanced and very specific, they are still  not perfect.  I mean, how can I have ulcerative COLitis without a COLON?  For all of my years researching and living with this, it was like the ABC’s of IBD to know that UC only lived in your colon.  I’m pretty sure mine is disintegrating in a jar somewhere…

But, does it really matter what I call it?  There are some in the medical community who believe that chronic pouchitis may be a new form of IBD.  Maybe I have that…Maybe it really is Crohn’s, maybe it doesn’t matter???

It just comes down to the power you give a name.  Does it really matter if what I have is Crohn’s or a new manifestation of UC, or chronic pouchitis?  It shows how much we begin to identify with “what we have.”  I really don’t want this disease, whatever it is, to become a part of my personality or my identity, and I know that to some extent, it has.  Hearing that I had Crohn’s was somewhat liberating because it was what I’d always feared the most.  Realizing that it didn’t much matter what you called it as long as it was treatable, was liberating.

This new information is confusing, but also puts it in perspective for me.  I know, without a doubt, that I have an auto-immune disease that attacks my intestines and causes some other manifestations (sinus, arthritis, etc.)  I guess there is some comfort in naming it, but all that does is give it power.

I now realize why my new GI never previously differentiated between CD and UC; he just always calls it IBD.   I may never know what “I have” but I know something now…I’m not going to make this who I am.

These posts might also help out:

]]> http://www.jpouch.net/2009/06/06/lets-just-call-itibd/feed/ 8 Workin’ It, J-Pouch style. http://www.jpouch.net/2009/01/22/workin-it-j-pouch-style/ http://www.jpouch.net/2009/01/22/workin-it-j-pouch-style/#comments Fri, 23 Jan 2009 00:35:26 +0000 Lizz http://www.jpouch.net/?p=1298 Lizz

Lizz

So, in my last post, I was bitching about pooin’ my pants.  I am HAPPY to update to you, my J-pouch friends, that this was in fact NOT a flare, rather a side-effect of one of my new medicines.  Nowhere do I recall reading on the label, “may cause one to crap one’s pants. Oops.”  But, indeed abdominal pain, diarrhea, et al. were side-effects.  I have since stopped taking it and have been continent and happy for several days now! Also glad that no scope was needed. “The dreaded apparatus!” as Kramer would say.

So, I am in Portland, apartment and job-hunting and had a nice interview this morning. When asked for a “candid” reason why I left my last job, I replied, “I had emergency surgery.” I did not go into detail, because explaining that I was having surgery for a twisted J-pouch required much too much explanation! She then followed-up with, “Are you doing okay now? Is this something that would prevent you from working?” I paused…answered, “No.” I wasn’t exactly forthcoming about my GI distresses, but I have been able to work for the past 6 months.  It’s hard to decide how to handle these situations. I can work now. There is the possibility that I will not be able to at some points in the future, but not being a fortune-teller, I kept my mouth shut.

I’m also on the hunt for a good GI out here, before I officially move. The one my current GI recommended is not in my insurance “network”. God bless the insurance companies! So, the search continues. Feel free to recommend who manages your guts in Portland.

Hope you are all having a good, adult-diapers-free week!

And just an added note about the aforementioned twisting of the pouch. NOT common. This happened b/c for some reason or other, I did not make the scar tissue most folks do that basically holds the pouch in place. It happened once, and was “untwisted” by my surgeon, who chose to avoid surgery to “tack it down” to my tailbone unless it happened again. It did happen again…So I had surgery this past April to fix it and so far so good. Very painful, but again, not at all common.  I asked my surgeon once if this could be because I did lots of yoga. He kindly giggled and said, “No.”

These posts might also help out:

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