J-pouch Life

After 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:

• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
• February 19, 2010 -- Blood, Poop, and Tears (2)
• February 15, 2010 -- I’m so over this colon. (12)
• February 8, 2010 -- A little insight on my insides. (12)