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:
c/o Lizz’s J-pouch