“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:

• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
• August 26, 2010 -- “My Hole” (2)
• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (5)

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:

• April 5, 2010 -- Home from Surgery #1 (1)
• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• June 17, 2009 -- Keepin’ it Real in the Real World with IBD. (6)
• June 6, 2009 -- Let’s just call it … IBD (8)