It's been a while since my last post and I have been thinking that this is perhaps a good sign. Whenever I run into health hurdles, I turn to my blog for self-therapy. As my friend Jen put it in a FB post, "Writing: a profession for introverts who want to tell you a story but don't want to make eye contact while telling it." Therefore, a lack of posts is a good indication of my well-being since there is, effectively, no "story" to tell about a lack of good health. But I thought that for those of you out there that are faced with J-Pouch surgery, it would probably be helpful for me to describe "J-Pouch life at it's best."
It has been almost 11 months since my first surgery, which included a total colectomy, creation of J-Pouch (ileo-anal pouch anastamosis) and creation of an ileostomy. For those of you that follow my blog or know me personally, you know that I had a second surgery in June 2011 to reverse the ileostomy and a third surgery in November 2011 due to a high-grade small bowel obstruction that required an exploratory laparotomy and an eleven-day hospital stay. Now, you might think that running into very serious complications from J-Pouch surgery (extensive Portal Vein Thrombosis, several paralytic ileus, intra-abdominal abscess, several infections and a high-grade small bowel obstruction) might make me quite skeptical about the benefits of this life-changing surgery. That couldn't be further from the truth.
Every morning I wake up and every night I go to bed, I still smile at the fact that I am no longer on ANY medications. I no longer worry about flares, about becoming debilitatingly ill or whether or not I'll be able to go on that trip I booked for the Summer. Of course, I now worry about small bowel obstructions, the chance of J-Pouch failure and permanent ileostomy, global warming and the scary, although unlikely, prospect of Newt Gingrich becoming President of the US of A. I'm learning how to control these anxieties, though, and realizing that life tends to take it's own course of which I have no control. For now, I just feel downright lucky to be living a healthy life.
Daily life with a J-Pouch? I have to empty my pouch around 5-10 times/day. It is highly dependent on what I eat or how convenient it is to access a bathroom. I say empty my pouch because that is what it feels like. It's a different sensation than before and I'd actually like to describe it as almost sensation-less. You learn how to build your muscles around the area to be able to hold the stool in. The longer you hold it, the more uncomfortable it becomes but I have NEVER had a problem with incontinence, pain, blood, tenesmus (the urge to defecate when there is nothing there, this happened to me often with UC), or extreme frequency (with a bad UC flare I used the bathroom anywhere from 25-40 times/day).
One issue I have had is with gas. I no longer have the ability to pass gas without passing stool. This can cause some discomfort as I try to hold gas in for long periods of time as to not be running to the bathroom too frequently. Overall, though, I see it as a non-issue as the benefits of no longer living with UC and the extreme pain and anxiety that come along with the disease (not to mention the frequent need to take a "time-out" from life and all its acitivites over the past ten years) far outweigh any of the small inconveniences of living with a J-Pouch.
If you are faced with J-Pouch surgery and have any questions at all, please ask! It's a daunting surgery and it's a long road to recovery, but once you're there you will never want to turn back.