Friday, August 26, 2011

Hurricane Irene is Messing with my Health

Today started off better than I could have hoped. I had the final interview for a job at a bank that I have long been hoping to work for. I received a call just a few hours later with a job offer. I start Tuesday. Now, you might ask, why not start Monday? Well, as you may have read in my last blog, I was supposed to be unconscious during the lunch hour, having giddy dreams about childhood picnics while my surgeon would search through my ileostomy wound to find the cause of the pain-in-my old temporary ass's abscesses. Well, thanks to Irene, I'll be eating lunch on Monday rather than reminiscing about peanut butter and fluff on Wonder Bread.

This is obviously problematic. I am starting a job on Tuesday, and my new procedure date was moved to September 19. I need 2.5 weeks off of work for my wedding/honeymoon in just six weeks, so asking for any other time off between now and when I tie the knot is out of the question. And I thought Irene was going to be done pouring her spout by Sunday night, so why cancel a Monday afternoon appointment? This is the first time I have been irritated with Dr. Proc, but I am trying to give him the benefit of the doubt. Maybe he drives an electric car and he's worried he won't have a full charge come Monday morning.

For now, let's get psyched about the return of The Sensitive Little Flower's paycheck.

Friday, August 19, 2011

More Surprises, More Anesthesia, and a Wedding-Day Gamble

I now have an official Dr. Procaccino-given nickname; "The Sensitive Little Flower." And it turns out that The Sensitive Little Flower's anesthesia days are not over. After probing, picking, slicing, and dicing (while very much awake), Dr. Procaccino concluded today that I will need to go under the knife yet again. The date? Monday, August 29.

The abscess is still draining through my wound. This is good news as far as averting any emergency surgeries or hospitalizations. The bad news is that Dr. Procaccino has a hunch that this is all being caused by an abnormal reaction by my immune system to the stitch line in my intestine where the ileostomy used to be. He actually dug so far down today that he was able to retrieve a piece of the stitch that should have dissolved many weeks ago. The only way to get rid of this parasitic abscess is to open me back up and get rid of the stitches.

Now, let's hope this is the cause of all this so we can be done with it by Labor Day. There were some concerns that it could be something a bit more serious, but let's not get ahead of ourselves. For now I have to make sure that I am not passing gas through my abdomen, that I am keeping fevers at bay, and that I do not experience any incontinence with my Procaccino-made organ. Dr. Proc says that he keeps thinking about me being able to get in my wedding dress in October. Well, this Sensitive Little Flower may have some failing organs, but she's also bull-headed. Come October 8th, concerns over abscesses, anesthesia, and incontinence will have to be put on hold. Because whether it be Depends or  a "Property of the Groom" thong, my Sensitive Little Ass will be walking down that aisle.

Tuesday, August 16, 2011

Annnd the results are in…….

Wow. What a weekend! Friday night started off with a pretty surreal first-meeting with Iris and her band. They are five of the coolest people I now know and as Iris said, "I feel like I've met my long-lost sister." Being almost exactly one year apart, Iris and I went through our surgeries at the same time in our lives and we were able to relate to each other on a level that most 26/27 year-olds would not have the opportunity to. I felt as though I really connected to all five of the band members and I was super sad to see them head back to Montreal this afternoon. It was a really special 5 days, and we are all pumped to repeat Guitars for Guts next year (but not before Billy and I make a trip to Montreal!).

And, now that we are on such a topic, Guitars for Guts kicked a$$ (pun intended!). We were able to raise almost $2,000 for CCFA and had a turnout of around 100 people. Unfortunately, it rained like cats and dogs on Sunday and we were not able to quite reach our fundraising goals (which we strongly believe to be the fault of good ole' Mother Nature). The most important thing is that we raised a ton of awareness about these debilitating diseases and for those of us that were able to make it to the event, we were psyched to watch four AMAZING bands take the stage. Everyone was blown away by the talent of all of the musicians who took part and were also impressed by the pure magic that is the Music Hall of Williamsburg. What a freakin' awesome venue! I have already had some other bands express interest in participating next year and one fan even commented that we should call it "Guts-a-Palooza". We all had such a blast.

I really want to thank everyone who donated to our fund page and those that attended our event from the bottom of my heart. Your participation and generosity will make an enormous impact on the future health of millions of IBD sufferers and has already made a tremendous difference for those of us IBD patients that attended the event on Sunday. It was very moving to see everyone who came out on such a rainy day to support the cause and that meant the world to people like myself and Iris. And, last but not least, Guitars for Guts brought two young J-Pouchers together who otherwise may have never met and marked the beginning of what we know will be a long-lasting and important friendship.


Sunday, August 7, 2011

Abscesses, guitars, and guts…oh my!

Friday was full of the unexpected. I had come home to my parent's house for the weekend in anticipation of a bridal shower in my honor, only to discover another less anticipated surprise. Around 3 o'clock in the afternoon I headed to the bathroom to make a routine mid-afternoon J-Poucher pit stop, only to find my ileostomy scar swollen and full of pus and blood. A hard, golf ball-sized patch under the site became swollen and began to drain through the scar. Two hours before this "surprise" bridal shower, I was laying on my mom's bed while a good family friend (who just happens to be an RN) inspected the wound and confirmed that I am now dealing with yet another abscess. Thankfully, this abscess has been draining through the scar and as long as it continues to drain I will be able to avoid another visit/stay in the hospital. Let's keep our fingers crossed because Guitars for Guts is now one week away and I have been looking forward to this day for quite a long time!

So, why come to Guitars for Guts? Because of stories like Blake's, Ben's,  Iris' or Jess' or one of the millions of others that are suffering worldwide from these debilitating gastrointestinal diseases. Only we can make a difference. By donating $25 and spending a Sunday afternoon listening to four amazing and original bands (all of whom have been affected on a very personal level by these diseases), we can get THAT much closer to finding a cure for Crohn's Disease and Ulcerative Colitis. We will be THAT much closer to finding a new road for millions of people to walk down; a road that leads to fulfilling and active lifestyles. 

Although complete removal of the colon and rectum serves as a superficial "cure" for Ulcerative Colitis, it is not true cure. UC patients will still suffer from systemic inflammation and many other extraintestinal complications for the rest of their lives; including, but not limited to gallstones, rheumatoid arthritis, kidney stones, skin rashes, liver disease, and so on. There is no effective cure to treat the intestinal or digestive symptoms of Crohn's Disease. 

IBD does not make headlines like breast cancer, AIDS, or many other tragic and debilitating diseases and, hence, does not receive nearly as much funding for research. This needs to change. Our digestive tracts may not symbolize femininity and a diagnosis may not signal a death sentence, but a diagnosis of IBD can be devastating as well. For many patients, a diagnosis of IBD can mean an end to life as we know it. Life is short for all of us; let's give IBD patients that chance to make the most of it. 

If you cannot attend Guitars for Guts, please consider making a donation to our fund. Thank you in advance for your generous support. Every penny makes a big difference for the lives of millions of our family and friends. 

Monday, August 1, 2011

Mr. Diarrhea-mouth

The wedding is inching near the two month mark and so Billy and I were off to New Hampshire for a three-day weekend to finalize many of the details. It was wonderful to finally be back eating my favorite dishes at some of New Hampshire's best restaurants (not to mention finally being able to taste some of the wines for the wedding without keeling over in pain!). I could not have asked for better weather, sweeter company, or a more beautiful setting to enjoy my first getaway since my second surgery, until around 3pm on Saturday…

Our 3pm meeting with, well shall we call him Mr. Diarrhea-mouth?, began swimmingly. I was excited to hear of his pro-gay marriage and liberal sentiments and felt an immediate kinship with this man that will be an important part of our marriage celebrations. Around twenty minutes into the conversation, he asked how we would like to be introduced as an officially wedded couple. I joked that while we would like to use our official given names of Katherine and William, we have been working hard to avoid any references to the Royal Couple. He laughed and amidst a slap to his thigh he replied, "Oh I hadn't even thought of that! You two are every bit as good-looking as the Royal Couple, except, well, I guess you [he pointed to my way], you're disgusting. You're much too thin." He then gestured towards Billy, "You look great though. I wish I looked like you when I was your age." Had he really just said that? After a long and heated inner debate whereby I questioned my hearing abilities and even my own sanity, I decided to write it off and assumed that I must have misheard him.

On our way out I turned to Billy and started to say, "Hey, did I hear.." Billy began to laugh; "Yeah, you heard him right. I can't believe he said that to you!" While it was nice in a way to hear that not all men find underweight women to be attractive, I couldn't help but feel immensely hurt by the comment. Did he have to use the word "disgusting?" Am I really THAT thin? When Billy asked what I would like for dinner that night, I responded, "pizza and chocolate cake." And so, that night, I gorged myself in an attempt to de-disgustify myself, all to no avail. I came home two pounds lighter.

Ultimately, I concluded that while this one man may find the sight of me to be a horror, I can't let that get to me. I survived two major surgeries and nine years of a brutal disease. My thin, scarred frame tells my story and it's a tale that I will never be ashamed to tell.