Tuesday, February 21, 2012

First Run-In with Pouchitis

Yuck. Got pouchitis. I am not sure how or why, but I began showing symptoms about 12 days ago. Pouchitis is an inflammation of the ileal pouch (or j-pouch) and presents with urgency, bloody diarrehea and an increase in frequency. I first noticed urgency, then blood. As I have mentioned before, frequency is an ongoing issue for me, pouchitis or not. Pouchitis becomes a chronic issue for about 10% of pouch owners, so I am just hoping I am not one of them.

After ten years of suffering from UC and spending the last year in a seemingly infinite state of convelescence, I'm sure you can understand why I am not too psyched about having pouchitis. Antibiotics seem to be helping and I have also been taking the potent probiotic, VSL #3. For now I am feeling much better, but I am concerned that I may need long-term antibiotics to keep the pouchitis at bay. Hopefully not. But in reality, if that were the case I would be lucky. Worst case scenario is "bye bye pouch" (ie permanet ileostomy). Still not terrible. Perhaps living with an ileostomy bag or pouchitis is not ideal, but one thing I am sure of is it is better than the alternative.

On Thursday the bank I work for will be hosting a bone marrow drive to see if we can find a match for a six year-old Acute Lymphocytic Leukema patient. The boy, Colin, was diagnosed shortly before Christmas and spent the holidays and the entire month of January hospitalized undergoing intensive chemotherapy treatments. Reading about this was the equivalent of ripping my heart out and stomping on it, and I truly hope that I or one of my coworkers will be able to make a life-saving donation to this truly heroic child. Colin refuses to tell his younger brother of his disease because he does not want him to worry.

Why do I bring this heartwrenching story up in a UC blog? Mostly to provide persepective. If six year-old Colin can hold on to hope and exhibit such selfless dignity in such deeply dire times, I just have to feel lucky, extremely lucky, that my worst case scenario would be a life-enhancing bag that would allow me to live. Colin might not be so lucky.

Sunday, February 12, 2012

Post-Colectomy/Laparotomy Scars

Looking back at my most popular blogs, I noticed that my most popular post was the one I wrote about my scars nearly eight months ago. I realized that I had promised to update on the progression, or healing, of these scars at certain intervals, so here we go. As a fairly vain twenty-something year old, I know I was curious enough to know what my body would look like post-total colectomy. In fact, my surgeon confessed that many women will not use him for this particular surgery because he refuses to perform it laparoscopically. He sees it as simply too dangerous to perform such a major surgery without full view of the abdominal cavity. After having almost lost my father to a robotic surgery gone very wrong for this very reason (the surgeon, one of the "world's best" accidentally, and unknowingly, perforated his bowel while removing his prostate. This went undiagnosed for several days while my father was suffering from peritonitis), I opted for the safer option and the uglier abdomen. A small price to pay if you ask me. 

Now, keep in mind these scars are fairly fresh. I was re-opened in November of 2011 due to a high-grade small bowel obstruction. You will notice a small and very faint scar on the left side of my abdomen from the sump (healing VERY nicely). The ileostomy scar on the right is also healing well and is approximately eight months old. I had a fairly persistent issue with abscesses following my takedown surgery so, unfortunately, that scar has been through hell and back. Though still raw and purple, the main incision is still healing very well and is really fairly thin. The scar continues down a few inches further.

I will be sure to update again with more scar pictures in a few months. For those of you who think you'll die without your bikini next summer, all I can say is I still had a pretty grand time in Bora Bora in a one-piece. 

Monday, February 6, 2012

The Daily Life of a J-Pouch

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.