Friday, December 23, 2011

In Anticipation of an Emotional New Year!

2011. What a year. It began with a fairly serious flare of Ulcerative Colitis, not my worst clinically, but my worst emotionally as I knew what the failure of the last-ditch medication, Remicade, signalled. Here was my year in a nutshell:

January: Successful infusion of the chemotherapy drug, Remicade. Hopeful for remission.

February: UC flare exacerbated.

March: Remicade infusion induces anaphylactic shock. Within two weeks I had lost my job and was in the hospital undergoing a major open abdominal surgery that entailed a panproctocolectomy (removal of large intestine and rectum), ileoanal anastamosis (creation of a new rectum-like organ using the ileum, aka end of small intestine), and creation of ileostomy (a hole created on the right side of my abdomen where my small intestine was pulled through. The small intestine had a small hole whereby stool would pass into an external bag).

April: Readmitted to hospital with extensive PVT (Portal Vein Thrombosis), bladder infection, and paralytic ileus. The PVT, blood clots in the portal and mesenteric veins leading to the liver, required a 24-hour heparin infusion to begin anticoagulation proceess, week-long hospital stay, then twice-daily self-injected Lovenox shots, four CT Scans to monitor, daily Coumadin, and weekly INR monitoring for three months until my takedown surgery.

May: Continuation of weekly INR monitoring at primary care physician. Extensive work-up with Hematologist and Vascular Surgeon to check for genetic predispostion to clotting and to monitor PVT. Continued to heal from extensive abdominal surgery and emotionally adjust to ileostomy.

June: Began with pouchagram, a radiological imaging to check J-Pouch for leaks and assess it's usability/determine whether it is ready for takedown surgery. This procedure is painful as your pouch is not quite healed, be sure to make sure radiology team knows what a pouchagram is if you need to undergo this procedure! My takedown surgery took place at the end of June and was, thankfully, successful. After a week-long hospitalization, I was sent home without an ileostomy and full use of my J-Pouch. Downside was I had a very large and deep hole in my abdomen from where the ileostomy used to be which needed careful monitoring because...

July: Readmitted to hospital with abscess under old ileostomy site. After four more days of intravenous antibiotics, I was able to skirt an IR (Interventional Radiology) surgery to drain abscess and was able to return home.

August: Return of abscess. Thankfully, did not require hospitalization, but did require careful monitoring and wound care.

September: Started a job!! Finally feeling well enough to get back to work.

October: I got married (check out quick slideshow of event)!!! To the most wonderful man on earth (Dad, you're the most wonderful too). Also took the trip of my lifetime to Bora, Bora in French Polynesia. Life was good.

November: Rushed to hospital via ambulance at 3am while experiencing severe abdominal pain. After four days of monitoring with NG tube, the doctors were finally able to get a clear CT image and I was taken into surgery. The scar tissue from my previous surgeries caused a complete SBO (small bowel obstruction). My surgeon had to make another large incision through the middle of my abdomen to lyse the adhesions and free my bowel while doing an exploratory laparotomy. Thankfully, no resection was required as a piece of bowel that was dying revived itself. After 11 days of NPO (no food or water) and 11 days in the hospital, I returned home for another recovery.

December: Returned to work, enjoyed a late Thanksgiving feast, and am now looking forward to a wonderful Christmas and hopeful for a healthy New Year.

2011 saw the highest and lowest moments of my life. Many lessons were learned and many experiences were had. I just hope 2012 is less eventful.

Merry Christmas, Happy Holidays and Happy New Year to all of my blog readers! You have been such a wonderfully supportive piece of the intricate puzzle that was this past year. This blog has been read more than 8,000 times by people in over 60 countries and I hope that you will keep reading to see how 2012 pans out. Hopefully, I will be able to provide some insight into J-Pouch life at its best.

Tuesday, November 29, 2011

A Season of Introspection

It's been three years since my friend Jana's life was taken from her by leukemia at the age of 21. Twenty-One. Jana touched so many lives and the ones she has affected will never be the same. Those that were closest to Jana are some of the happiest, most charitable and most motivated people that I have the pleasure of knowing and they are that way because of the memory of her. Even three years after her death, Jana is still exuding grace, beauty and strength and I know that I personally would not be in the mentally sound place I am today without her. Every time I am wheeled into the OR, put in an ambulance, or given bad news regarding my health, I think of her, and even in those moments I feel like the luckiest person alive.

The more issues I run into with my health, the more I am able to appreciate the delicacy of life. Now that the holidays are here, I feel this even more acutely. I spent Thanksgiving in a hospital bed, in pain, unable to eat or even drink water. But it was the most meaningful Thanksgiving of my life. As my beautiful husband and faithful parents sat by my bed last Thursday, all I could think of was how lucky I am that I am still here, that I still have my father after all of his health issues, that I found the most amazing man on the face of the earth that stands by my hospital bed through thick and thin and that I have a mother to go home to to nurse me back to health.

I have also been so lucky to have so many friends and family come to visit in the hospital and here at home as I recover yet again. It's hard to feel sorry for yourself when you have a support system the size of the Third Reich (although mine is much more well-meaning). And now that it's almost Christmas time I want to ask those closest to me for the most meaningful present I could possibly ask for. Take care of yourself and cherish what you have. Change what you can. Accept what you can't. I hate seeing people watch my pain and then walk back to poisonous lifestyles. This Christmas, I want more than anything for my pain to not be in vain. Let's turn it into something beautiful; a gift like the one Jana has given to so many others. Perche la vita dovrebbe essere bella. (Because life should be beautiful).

Sunday, November 27, 2011

Discharge Today?

I just ate a bagel. Holy sh&t. After 11 days of NPO (no food or water). And so far it's staying down. The past eleven days have had their ups and downs (mostly downs, unfortunately), but things are FINALLY looking up and I am really hoping to be out of the hospital today. Thank god the piece of bowel that they may have needed to re-operate on seems to have revived itself. Awesome. I am keeping food down. Awesome. My spirits are up. Awesome. I ate. F(*^&g really awesome.

My reintroduction to liquids went poorly, I have a urinary infection and have been having some super serious dehydration issues because of my lack of large intestine (your large intestine absorbs water for your body, so when it is missing hydration can be very tricky). I have spent most of the past eleven days with an NG tube, no food, no water, not able to move much at all, and only being able to speak minimally. Today, I am up and about, rapping in my chair (yes, rapping like Biggie Smalls) ha!, and feeling really optimistic about my prognosis.

Because I had this obstruction and because they had to open me up again, I am more prone to this happening again in the future. There is nothing I can do to prevent it. This means, of course, that I will worry. But it also means that I am going to hold onto every moment I have more preciously. Every time I get to gorge myself with brie cheese, swim in the ocean, walk home from work, or be at home with my dog and my husband will be cherished. I truly believe that only people that have had serious struggles with their health are able to obtain this kind of gratefulness for life, and for that I feel very lucky.

Now, let's hope for a good night's sleep in my own bed tonight and then back to work at healing another incision and rebuilding my sense of security. Because, hey, who knows when the Rapture is really coming, so it seems illogical to worry. But this whole thing sure did come as a shock.

Wednesday, November 23, 2011

Day 2 Post-Op

Day Two Post-Op:

I woke up from surgery on Monday afternoon, so happy to have lived through the procedure. They did a CT Scan on Sunday night and found some "disturbing" results and moved up my surgery to an emergency slot. It's a good thing they did, I had a piece of bowel that was dying.

My doctors and family let me stay blissfully unaware of this problematic piece of bowel for most of the day Monday. I was told by my doctors on Monday night that they will have to keep a very close eye on me, because around Day 5-7 Post-Op we may run into more troubles again. They were able to get rid of the adhesions that were causing the blockage (it was a High-Grade Complete Obstruction), but there was a piece of the bowel involved that was purplish, almost black and may require a resection of the bowel. He was not able to resect while operating on Monday because my bowel was much too distended, rendering the procedure too dangerous to perform.

So, while I am starting to feel better and hope I am on the road to a full recovery, I do nervously await Days 5-7 Post-Op because I REALLY do not need any more surprises. I have also been told that I am at higher risk for obstructions in the future because of this one, so I think this surgery is going to be perhaps the toughest one to tackle mentally. But, hey, I could be hit by lightning tomorrow so worrying doesn't seem logical (although much easier said than done).

Will update again when any significant strides are made. For now, I am still NPO (off food and water) and it has been one week now so I am starting to feel a bit grumpy. Looks like I will probably be NPO for  Thanksgiving too. Oh well.

Well, have a Happy Turkey Day everyone….and, please, be so very thankful for your health!

Monday, November 21, 2011

Damn, all I wanted was some damn turkey!

I was rushed to the hospital via ambulance on Wednesday night and diagnosed with a high-grade complete bowel obstruction. The nasogastric tube has been unable to resolve the issue, so I am headed to the OR around 11 o'clock today for an exploratory laparotomy (they will open up my old scar, so it will be an open surgery and they will correct the obstruction). Since they cannot be totally sure of what is going on until the open me, the surgery will be anywhere from 2-4 hours. Sounds like I will be in the hospital another week or so and the recovery will be around 1 month. Will write more detailed blog when in better shape.

F8*k. I really wanted some mashed potatoes and turkey on Thursday.

Tuesday, November 8, 2011

A Post from the new Mrs. Pearce!

As I sit here, writing my first blogpost as Mrs. Pearce (it's official, I got my SS card today!), I can't help but feel a bit of nostalgia for Ms. Boccard. This past year has been marked by a slow metamorphosis into the person I have become today; beginning as the single girl who lost her large intestine, rectum, and pretty-looking abdomen, and ending as a most satisfied, healthy, and utterly happy wife. All of the well-wishes and love that have been sent my way throughout this past year were beautifully immortalized by a most perfect wedding day, shared by our most cherished friends and family on an unseasonably warm and sunny October weekend (check out a lovely short video put together by our wedding photographer here). A big thanks to Dr. Procaccino, Dr. Eskreis, Dr. Krishnasastry, Dr. Vomero, Dr. Meekan, Dr. Collani, and the countless other doctors, nurses, interns, residents and fellows who made our day possible.  From my "anti-wedding diet" to dress-fitting advice a la Dr. Procaccino, there was not a moment in that six month-long battle where my team of doctor's did not have my wedding day in mind as the ultimate goal. I knew they wouldn't let me down.

Now, for that next stage in life and the continuing road to a full recovery. I am due for another health-related procedure early next week and the news that I would need such a procedure has come as a bit of a shock. Just when you think you've finally put your good health on cruise control, some motherf&*ing rubbernecker makes you slam on the brakes. It's time to get back in survival mode, because we know the road can be bumpy, but an optimistic outlook is key. Billy and I are very much looking forward to starting a family some day and this newest news could potentially complicate these goals (my surgeries could also have a potentially negative affect on my fertility, so it's like a double-whammy). But just like J-Pouch surgery, I firmly believe that fertility has a lot to do with frame of mind. On March 31 2011, as I walked into a brightly lit and bustling OR and laid down on that crucifix-shaped bed, I pictured myself walking down the aisle on my wedding day, in my father's arms, as I approached my beautiful husband-to-be. Now, I just have to believe that my new husband will have that very same priceless opportunity to make that same stroll with a daughter of our own someday.

To be continued….

Thursday, September 22, 2011

Updates From a Happy & Healthy J-Poucher!

It's been a while! Life has been both busy and healthy and, as such, I have been distanced from thinking about my "pouch." In fact, aside from some abscess-related pain and curry-induced sprints to il bagno, I have more or less forgotten about the fact that I lost my large intestine just six months ago.

That reminds me. About a week ago, I began to feel some fairly major discomfort in my abdomen around the site of my ileostomy. I kept this to myself (for the most part) as I knew I didn't have the time to take off of work to have my surgeon take a looksie. So, I was naturally forced to play the role of surgeon. Billy is of the (strong) opinion that Google and WebMD cannot act as substitiutes for a medical degree. He also likes to remind me that I am not a colorectal surgeon. While there may be a tad of truth to this, I have an admittedly deplorable habit of turning to these unacademic, and often unchecked, sites for self-diagnoses and medical advice. Well, my ten-year WebMD training certainly came in handy on Tuesday evening.... 

After some poking and prodding, I was able to remove the stitches that were causing these abscesses on my own! I won't get into gory details (which may surprise you), but a few big knotted stitches were finally removed from my abdomen and the infection seems to FINALLY be on its way out.

POUCH UPDATE: All is well on this front. It truly does get better all the time. I spoke with my surgeon last week and he promised me the pouch would continue to improve for 6 months - 1 year. I couldn't be more pleased. I do use the restroom anywhere from 6-10 times/day, but this is really a non-issue. For those of you anticipating life with a J-Pouch, just trust will love it.

PS Wedding is in two weeks! Will update post-nuptials. For ten years I have been praying that I would not be on high-dose prednisone on my wedding day...and I can almost guarantee you this dream will come true!

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.

Tuesday, July 26, 2011

Surgery #1- What to Expect: Tubular Sensations

I have been thinking that it might be helpful and informative to review the procedure for the first surgery for those of you going through this, or for those of you that are just simply interested. Although my surgeon is wonderful, he did not go over many details of the surgery before I went in and I was maybe in a little bit of shock when I woke up from the anesthesia to find certain things poking in and out of my body. Since this first surgery is such a major undertaking, it is difficult, I think, for the surgeon to really cover everything. In this blog I am just going to go over the tubes. In the next one I will go over some other details. So, here is what you can expect:

Stuff that will be poking in and out of you when you wake up in the PACU:

1. A Foley catheter (this is a tube inserted into your bladder to drain your urine. The urine collects in a container on the outside of your body. This will still in place until several days post-op. It does not hurt to remove, nor does it hurt when it is in).
2. A second two-pronged catheter (the placement of these catheters will be the first phase of your surgery. A urologic surgeon will put these in place. They are meant to mark your ureters so that the colorectal surgeon does not damage them during the surgery. These will stay in place until a couple of days post-op. They are very uncomfortable to remove, but the process is quick).
3. A nasogastric tube (A tube inserted through your nose and put down into your stomach, this will drain the contents of your stomach into a container outside of your body). This may or may not still be in when you are in the post-anesthesia phase. Mine was taken out during surgery, only to be put back in on two different occasions while I was very much awake. It is worth discussing with your surgeon the possibility of leaving the NG tube in post-operatively. While the tube is definitely uncomfortable to have in, the worst part is the process of it going in. Better to do this while you're unconscious if you ask me, but if you're post-op, you will be awake). I spent most of my time in the hospital either telling tall tales to avoid having the NG tube put in, or desperately trying to convince my surgeon (or any other poor soul that happened to walk into my room) to take the tube out. Ask for some Ativan. NG tubes may induce severe anxiety.
4. A sump (A sump is a large drain [larger than a Jackson Pratt drain] that is placed through an incision on your abdomen into your abdominal cavity. It will drain the fluid build-up in your abdominal cavity and will be left in until several days post-op. The sump just feels downright strange when it is coming out, but it is not painful. My fiance looked on as they took this drain out and he exclaimed, "Holy cow! How long is that tube! I didn't even realize her abdominal cavity could be that deep!") In other words, you may want to close your eyes. The hole left from the sump will not be sutured or stapled shut. It will slowly close on it's own. Do yourself a favor and don't look at it the first couple of weeks… unless of course you're some kind of sadist.
5. The ileostomy (This is far and away the most shocking thing to see when you wake up. You knew it was going to be there. Seeing it is very different than imagining it. It took me several days to be able to look at the stoma [part of your small intestine that will be sticking through an incision in your skin, your stool will collect in an ostomy bag that is placed around the stoma]. This will stay on until at least 12 weeks post-op. May be longer depending on your personal circumstances. I would very much like to stress that while this will be difficult to see and confront at first, but you will learn to love this thing. You have to remember that you are having this surgery because you were very sick. The ileostomy will change your life almost immediately. It will allow you to live. The ileostomy can only be reversed surgically).
6. An epidural (This is a catheter that is inserted into your spine. It is used to localize your pain medication so that you do not become nauseous, dizzy, or high. Sometimes, you will wish you were high, but overall the epidural is a good thing. I had severe hypotension and vertigo from the epidural and so I was not able to get out of my hospital bed until the epidural was taken out 4-5 days post-op).
7. An IV (or maybe even 2) (Ok, duh. Everyone in the hospital has an IV. I had two because of my Portal Vein Thrombosis, blood clots in the vein leading to the liver. They needed to have me on a heparin infusion 24/7, so a second IV was necessary to give me all the other fun stuff. This will stay in until you sign your life away upon discharge).

The bottom line is you will have anywhere from 5-9 tubes sticking out of your body, most of them necessitating collection bins around your hospital bed that will be filled with a rainbow of different colors. Well, it's more like a very sick rainbow of very dull and disturbing colors, but if you eat a blue-colored Blow Pop, your NG collection tube will collect a very bright and cheery color.

The important thing is to stay strong. It will be scary seeing all of this, but you must know that it will all be gone soon and it is all part of the road to a strong and healthy life!

Thursday, July 21, 2011

16 weeks post-op #1 / 4 weeks post-op #2…& Scars!

Today is a very special day as it is both my 16-week anniversary of my first surgery, and my 4-week anniversary of my second surgery. You may be thinking, so what? Well, I'll tell you what. It's a big deal. Since both of my surgeries took place at 7:30am on a Thursday, I am going to celebrate every Thursday at 7:30am. Celebrate the fact that I'm alive. Hell, why not do that everyday?

Today is also a big deal because my hole is finally closed. This is the real deal folks. I even have pictures of it to show you. I promise they are not grotesque, although my perception of the grotesque has become slightly askew in the last few months. Bottom line: if you can't stand the heat, get out of the kitchen. This is a UC blog and, quite frankly, UC is not a pretty disease.

At 4 weeks post-op I am feeling remarkably well. The recovery from this last surgery has been a bit tougher than I expected. Yet, as should be duly noted, it's a breeze compared to the first. Maybe it was the abscess. Maybe it was the hole. Or perhaps it was just my high expectations. I'm sure those of you that have gone through these surgeries would understand where I am coming from when I say that I had a tendency to view that 7:30am surgery time on June 23 as the end of the line; my long-awaited moment to kiss UC goodbye forever. I kind of forgot there was another recovery. Well, I feel like I've finally reached that light at the end of the tunnel. But, let's cross our fingers. I have bad luck.

The two pictures below are of what my abdomen looks like today. The sump scar on the left side of my belly is healing nicely, although it is still a bit purple. The sump was a drain that was placed into my abdomen to drain the fluids from my abdominal cavity during the first surgery and was left in until 3 days post-op. The top half of my central incision is healing unbelievably well (my scar continues pretty much all the way down my torso). It is almost completely white and, even up close, the staple scars are barely perceptible. The scar on the right side of my abdomen is where the hole was (and where my ileostomy used to be). They did what is called a "key-hole" whereby they stapled just the bottom of the hole and then left the rest open to heal and close on its own. It is amazing how much smaller the scar is than the hole was. I would guesstimate that the hole was around 2-3 times the width right after surgery than it is now. Note: The sump scar and central incision are from surgery #1, the key-hole scar is from surgery #2.

And for anyone who may be interested, this is a very well-written and engaging article about life with UC from the New York Times: Loren Berlin Article

Friday, July 15, 2011

Simplicity in Complexity

Just over 3 weeks post-op. I've been spending the majority of my time feigning normalcy. Yesterday I took an hour-long walk to buy a ribbon. Normal, right? Then I spent the afternoon slaving away on extraneous wedding-related crafts, hunched over in a position that would cause someone without a hole in their abdomen to be sore for days. I decided to top that off with an evening of shopping. So when I tell you I was back at Dr. Procaccino's office this afternoon, I don't expect any sympathy.

The abscess is about as stubborn as my resolution to resume living the mind-numbingly chaotic, overly-strenuous, no time to even stop to take a shit, New York lifestyle. It's still there. After stabbing around in my wound for a while, Dr. Procaccino concluded that another round of Augmentin would be best. I was a bit testy today and got annoyed with Proc after he came back into the exam room just to say, "Oh, and put a little weight on, will yah? You're starting to look like a human railway and it's beginning to worry me." Thanks, Dr. Proc. I'll keep that one in mind. Maybe if you hadn't taken out a large section of my digestive tract, I wouldn't have this problem? When I hopped in the car in a tiff, my mother suggested that there must be something a little off with someone who slices into human bodies for a living. "Actually, I'm pretty sure that serial killer in California was a surgeon," were the words of comfort she offered me. "Thanks, ma. I'll be sure to remember that next time I go under the knife."

I don't mean to bash Dr. Proc. He's my here-on-earth superhero. I actually kind of worship the guy. I've even had deluded thoughts of becoming a surgeon myself; that's how cool I think he is. There is an indescribable bond that I think many patients feel with their surgeon. It isn't often that you relinquish 100% control of your body and place your trust with it in another human being. I have been through a lot with Dr. Procaccino; probably the most vulnerable and frightening moments of my life. But he has given me more than just a new organ. Through his infamous wit and intolerance of vanity or superfluity, Dr. Procaccino has given me the rare gift of lucidity. When I whined to him about the less-than-perfect belly button he left me with after the first surgery, he was less than happy. "I took out your entire colon, and you're seriously complaining about a 1 millimeter section of your abdomen!?!?!" he yelled. When I questioned his censure of laparoscopic total colectomies, he said, "Look. If your main priority is conserving your six pack, I'm not your man. If approaching these surgeries in the safest way possible is your goal, let's talk." Suddenly, my hairstyle choice for my wedding day that I have been fretting over ceased to be of great importance. I stopped being angry with my Italian grandfather for that hairy arm trait that I have long associated with his Mediterranean descent and I began to embrace that Eiffel Tower-sized big toe on my right foot. I have become, well…happy. And so it seems that the more complications I incur, the easier it is to see clearly. I'm lucky to be able to take that stroll to the grocery store later, and I will take joy in every step of the way there. But I'll still be working on securing that 65-hour per-week job. Hey, one thing that can't be surgically removed is an A-type personality.

Monday, July 11, 2011

Giving Back (and it's about time!)

Note: Click on blue/purple links below to learn more about the highlighted topics!

After nearly a decade of relying on CCFA (The Crohn's and Colitis Foundation of America) for comfort, information, and hope, I am so excited about finally giving back. Our show on Sunday, August 14, Guitars for Guts: A Benefit Concert for the CCFA, will raise funds for this non-profit organization that has long been an indispensable resource for IBD patients, their families and their friends. When I was first diagnosed with Ulcerative Colitis, I turned to CCFA to learn about my disease, to find a support network of other patients, and to read about the latest in IBD research funded by this very altruistic organization. Because of the research funded by CCFA, I will not have to live with an ostomy bag for the rest of my life. And it was because of CCFA that I have been able to find my support network of other young women that have undergone total colectomies. And let me tell you, I don't know how I would have made it through these tough times without them. In fact, when CCFA heard about my surgeries, they had a wonderfully optimistic and supportive young woman reach out to me. She calmed my nerves and assured me that I would one day soon lead a very fulfilling and healthy life.

As most of you have heard by now, our fundraiser on the 14th of August will feature ROADS band from Montreal, Canada and The Alphabets from Brooklyn. A third band will also be announced very soon. Both ROADS and The Alphabets have been touched by these diseases on a very personal level. Iris Campo, the drummer and backup singer for ROADS, survived a dreadful complication of Ulcerative Colitis last year, toxic megacolon. Iris was given 2 hours to decide whether to undergo a total colectomy. If she had opted out of this surgery she would have inevitably suffered from peritonitis, an often-deadly infection of the abdominal cavity. Three surgeries and almost a year later, Iris was able to sit at her drum-set and live out her dream of playing for ROADS record-launch show.

My brother, Mark, is the lead guitarist and singer of The Alphabets. Despite a healthy fear of the grotesque, Mark has managed to be by my side many-a-time in the hospital and has often served as my voice when I didn't have one. Being only one year apart and sharing a similar network of high school and college friends, Mark would often have to explain why I would fall off the face of the earth for up to 6 months at a time. It was not until these surgeries that I learned that my disease is not something to be ashamed of. It may have taken nine years to find that voice, but for a long time I was that sketchy girl that couldn't leave the house for many months at a time for no "apparent" good reason. Thanks to Mark, I haven't lost those friends.

In conclusion, I am grateful for all that CCFA has done for me these last 10 years and I am excited about what CCFA can do for the million+ men, women, children and infants that suffer chronically from Crohn's Disease and Ulcerative Colitis. I want mothers to be able to care for their children. I want more kids to spend their summers at the beach, not in the hospital and I want more young women to be able to plan their own weddings without having to worry about whether they will be able to attend. I want a cure.

With your help, we can attain these goals. Please come out on August 14th to the Music Hall of Williamsburg to not only enjoy a kick-ass show of amazing musicians, but to also help us find a cure for these debilitating diseases. If you cannot attend the show, please consider being there "in spirit" by making a monetary contribution of any size to our fundraiser here (100% of these proceeds will go directly to CCFA). I thank you with all of my heart in advance for your support. And please tell your friends!!

Wednesday, July 6, 2011

And It's all Over….(almost)

I have been so caught up in this defensive mindset the last three months that I have almost lost sight of why I have had to go through all of this. By defensive, I mean tackling each new challenge as it comes. Once one is gone, I await the next. My attitude toward my health has become nonchalant, almost numb. While looking through a copy of my hospital records given to me by my doctor I could be heard saying things like, "Oh, I have ovarian cysts, too? How funny!" or "My appendix is severely inflamed? Can't wait for that surgery!" I didn't react in a normal fashion, or a healthy one. Sure, it's good to not let life knock you down. But there's also this deep, dark place where nothing can hurt you, nothing matters. I'm sure many of you have been there, too. And let me tell you, I'd rather cry enough tears to fill the Amazon than feel that empty. But now, finally, for the first time in almost ten years...I no longer feel like Humpty Dumpty.

This experience has also given me a pair of balls that I certainly didn't have before all of this. I figured, hey, if I'm losing my colon, I may as well get something in return. It's the Law of the Conservation of Mass, right? Having experienced high levels of pain, low levels of hemoglobin, and the opportunity to get chummy with my intestine that was sticking through my skin, how bad can a shark bite really be? Or a run-in with a hungry black bear? One thing that has become abundantly clear through all of this is that life is short, don't live it in fear.

On Friday night I will take my last dose of Augmentin, the antibiotic that has been clearing the infection from the abscess. I will still have a hole in my side that is slowly filling in, reminding me in a cautious manner that I will soon be whole again (pun intended!). Several doctors have told me that at that point I can safely have my scars revised by a plastic surgeon. They aren't going anywhere. The mind forgets pain very quickly, but I want there to be a reminder. When I see that bear running at me in the woods, I want to be able to look down and think, "I can take him."

Sunday, July 3, 2011

And…back again : (

After much coaxing from my fiance Billy, I was back in the ER again last night. I had been running fevers again since mid-afternoon and my temp had steadily climbed back up to a nice and toasty 102. I was having pain around the wound site and it looked infected again. After being in touch with the residents all afternoon/night, we all concluded that it was best to come back in just to be safe.

I have been given a few rounds of intravenous antibiotics and my fever broke and my WBC (white blood cell count) is down to a good and healthy range. Dr. Procaccino's associate, Dr. Calliendo, just came in and said, "well, this is totally up to you. Do you want to stick around here or no?" Did he seriously just ask me that question, I wondered? I obviously decided to get discharged. I should be out of here and back home by this afternoon. Dr. Calliendo seems to think that the abscess hadn't totally drained and it started causing fevers again last night and the infection in the wound site was the abscess draining again. But feeling much, much better so I think it should be totally safe to go back home. I had really been looking forward to spending this 3.5 day weekend with Billy, so it kind of sucks that we've had to spend half of it in the hospital, but I'm glad to got to see a beautiful fireworks show before I came back last night and I will indeed be home for the fourth. : )

And please spread word about our Benefit Concert for the CCFA, Guitars for Guts. We really need to get our ticket numbers up to make it a success and since I have been bed-bound more or less, it's been pretty hard to get advertisements out there so I'm depending on this good ole' blog! And remember, if you can't make it to the show, you can make a donation of any size to the fund here (100% of the proceeds will go directly to CCFA). And you can also add your friends to my facebook event! Thank you all for your ongoing support!!

Saturday, July 2, 2011

Home again, now let's make sure I stay here!

So two allergic reactions and three blown veins later, I'm home! I really thought I was going home yesterday morning, and the resident team had even gotten my hopes up when I saw them. "But, of course, only the boss can let you go home for sure." Well, the boss came in about 20 minutes later and crushed my heart. As the tears were welling up in my eyes, Dr. Procaccino wrapped his arms around my knees and frantically tried to comfort me. "Darling, darling. I love you, you know that. Bottom line is we need to get you out of here, but getting a call from my favorite patient and needing to tell them they have to go to the ER is my worst nightmare. I just need to make sure you don't have to come back here before I let you go."

He thought I could also use an extra day of the antibiotic Zosyn before coming home, and Zosyn is only given intravenously (I had an allergic reaction to the Vancomycin). Well, with all my great luck the IV nurses couldn't get an IV in. The one that had been in since the ER blew up my right arm to about twice it's size so they had to take it out. Then every subsequent vein they tried to poke collapsed. Thankfully, this made intravenous medication a bit more complicated than it would have otherwise been and so Dr. Proc decided to let me go home late last night. For once, my bad luck worked in my favor.

My nurse said that I was the talk of the floor the last two days, that the resident team couldn't get over how bad my luck is. Dr. Eskreis said, "you know Katie, you're making a very, very good surgeon look bad." He also advised that I show up to my wedding 10 minutes early just in case something happens on the way there. Dr. Procaccino joked, "I sure as hell wouldn't want to be standing next to you and a tree in a thunderstorm." And, sure, they're right. I have bad luck in a lot of ways. But thankfully all of these complications were short-term. The most important thing is that my J-Pouch is working like a gem and I am going to walk down the aisle on October 8th without a sign that any of this had happened. It will just seem like a bad dream. Although I must say, I am going to miss Dr. Procaccino's snazzy suit combinations. They always brightened up my mornings.

Friday, July 1, 2011

Home Today?

My night nurse came in and asked me if I had anyone to talk to. "You have been through a great deal and I just want to make sure that you have a good support system. Have you thought of talking to a professional?" At first I was a little taken aback. Had I shown some sort of emotional weakness that prompted her to make such a statement? No, I realized she had just looked through my hospital records. "I have a wonderful support system," I responded. She sat and talked with me for quite a while and she can just be added to that now very long list of reasons why North Shore Manhasset is the best hospital ever. After we concluded our talk, I realized that this blog is a big part of that support system.

When I first started the blog someone close to me (who shall go unnamed!) said I should have stopped my blog when I was discharged from my first surgery, that there was no point in writing and telling people my business, that it was even weird. "What, you think no one wants to hear about my bowel movements?" I sardonically responded. Truth is, Ulcerative Colitis and Crohn's Disease are ill-understood because those that suffer from them are too embarrassed to talk about it because of the types of symptoms they involve. That needs to change…and the buck stops here.

How else can we raise awareness so that the community at large can understand what IBD patients go through? I would say about 50% of people I have told in my life that I have Ulcerative Colitis have responded with something like, "Oh, I have that too. Sometimes when I get nervous about something I'll get diarrhea." U.C. is not just nervous diarrhea, but most people don't know that because most people don't know the disease. And if no one understands, how can we fundraise for research so that my generation's children do not have to go through what UC and Crohn's patients today have to go through? It's time that we IBD patients step up to the plate and have a voice…and Iris, thank you, because you have been a big inspiration! I also want to thank all my blog-readers too. Your constant support and interest in my blog is what makes me feel like I have a purpose during these tough times.

Update on me: Should be going home today, but waiting on my morning pathology reports. I hope that my next blog will be from home!

Thursday, June 30, 2011

Back in the Hospital : (

So my fever got worse last night and Dr. Procaccino told me to go directly to the ER. They did another CT Scan and an X-Ray and determined that I have an intra-abdominal abscess. I had a really rough night with pain, high fevers, and violent diarrhea and nonstop vomiting. Then around 5:30 this morning that all stopped and I am beginning to feel much better. Dr. Procaccino came in and tried to drain the abscess himself (pleasant, let me tell you!), but he was unsuccessful. We are just awaiting some second and third opinions on the CT Scan to see if I need to go in to Interventional Radiology to have the abscess drained. For now, I am on high doses of Vancomycin and some other antibiotic and I think they are working because my fever is down and I am feeling much, much better.

Dr. Procaccino thinks there is a chance that the abscess spontaneously burst overnight and the antibiotics might be clearing the infection, but he mentioned possibly doing another CT Scan this morning to confirm, which I am very much against. So, I guess once again we are just playing the waiting game here. Very happy that I don't feel like hell anymore so things are looking up once again. Looks like I'll be here until at least tomorrow, but let's hope this is my last hospitalization for a long, long, long time!!

Wednesday, June 29, 2011

(almost) 1-week post-op…feeling both good and bad!

I felt a little guilty about my last post being so negative so I didn't want to write again until I was in a better mood. Over the last few days there have been some really great improvement in some ways, but also some no-too-cool things have manifested as well. I think I'll start with the negative so I can end on a positive note!

I started running a fever late yesterday afternoon and called my surgeon. His associate called back right away and said if the fever persists for a day or if any other symptoms arise (ie severe abdominal pain, bloating, vomiting, etc.) that I would have to come back to the ER and they would have to do another CT Scan. The fever is being managed fairly well with Tylenol, but I am still waiting things out. It's always tough to make decisions in this situation. For example, of COURSE I have fairly severe abdominal pain, I just had a major abdominal surgery less than a week ago. I have also been exposed to 3 CT Scans in the last 3 months (which carry about 500 times the amount of radiation than an X-Ray). My doctors have already expressed sincere concern about how much I have been radiated (these were not my first CT Scans either), so I am trying to weigh the risks of more radiation vs. the dangers of a possible complication. I am feeling a bit better today so let's just cross our fingers.

Ok, now time for the good news. I am able to sleep through the night now, more or less. Last night I only had to get up ONCE to use the restroom...super exciting! I have already gone from using the bathroom 20 times/day to around 8 times/day so I am feeling really really good about my future and living with the J-Pouch. It's going to be great!

I think in my next blogs I am going to talk a little bit about Crohn's disease (which I am very, very thankful I do not have). Since we are trying to fundraise for the CCFA through our event Guitars for Guts, I think those that are so kind and altruistic as to help us in the fight to cure these diseases should know a little bit more about them. Crohn's Disease can be much, much worse than Ulcerative Colitis. When I was in the hospital for a colonoscopy when I was first diagnosed with U.C., there was a 14-year old boy in the bed next to me with Crohn's disease who had spent the better part of the last 3 years in the hospital. No one should have to live like that. I feel so fortunate that the panproctocolectomy and ileo-anal pouch anastamosis were available to me, but doctors and researchers would never have been able to develop such groundbreaking surgeries if it were not for the funds raised by the CCFA.

Monday, June 27, 2011

Outta There!

So yesterday morning I was eagerly awaiting the arrival of the residents, which was of course delayed a few hours because it was a weekend. I had been told that I would be able to start food, so my Dad sat next to me, ready to feed me a bagel after getting the good word. They came in, examined me, and said, "ok, continue with the liquid diet for today and Dr. Calliendo will be in to see you later." I freaked. After no food for almost five days I was in tears, "Wait!! Wait!! You can't leave me like that!! You told me I could have food!! I farted on FRIDAY night, and I was supposed to get food ONE day after that, which would have been last night and now it is SUNDAY morning and you say NO FOOD!! ARE YOU NUTS?!" He just looked at me and giggled, "One more day of liquids never killed anyone," and swiftly left the room. Ok, maybe he was right and maybe I overreacted, but I was grumpy. The resident team had changed since I was in the hospital in March/April and I was not too fond of this new group. In fact, the chief resident from my last visit came in and sat with me for an hour yesterday afternoon, chatting it up with me, telling me how success stories like mine are the reason she became a surgeon. I told her that surgeons like her are the only reason why success stories like mine can happen. I got teary-eyed when she left, and I think she did too. She was my rock during my whole last surgery and I am thankful every day that people like her are walking this earth. We exchanged emails and we will definitely keep in touch.

I decided to go for a walk a few hours later and my Mom came to find me and Billy on the other side of the hall yelling, "Dr. Procaccino is on the phone!!" He wasn't on call this past weekend, so I hadn't seen him since Friday. I somehow found the energy to run to my room as quickly as I could, which wasn't very quick I must admit. I scooped up the phone and said, "Dr. Procaccino, save me!! You have to get me OUT OF THIS PLACE!!!" He laughed and said, "have you eaten yet?" Of course I told him about the residents that morning and how they cruely refused to feed my 110 pound, starving frame. He said, "Ok, eat and as long as you're ok in a few hours I'll let you go home, but you must promise me that your belly is NOT distended, that you are NOT nauseuous, and that you will come in to see me on Friday because I am going away and I want to see a smile on that pretty little face of yours before I take off for my summer vacation." I was elated. "Yes! I promise I will be OK before I leave this time and I promise I will come see you. THANK YOU SO MUCH, THIS PLACE SUCKS!!" And so, just three or fours hours later I was on my way home.

I had a lot of trouble with the hospital this time around. I guess I had never been hospitalized for more than 1 week in 1 year and this year I had 3 hospitalizations over a 3 month period, totaling 17 days in the hospital. I know it could be worse, but that was the upper end of what I could deal with and still stay sane. I am very happy to be home, but not as happy quite yet as you might expect someone to be that just got rid of a bag of feces that was hanging on their side. Yes, it's great to be rid of the bag, but it was replaced with a gaping hole in my side that I can't even look at without getting faint or nauseous. I am also using the bathroom about 20 times/day and up all night and emotionally, that is tough seeing as I've gone through all of this to get rid of that problem. It also burns a whole lot when I go to the bathroom. I am told this will all slowly get better, but for now that just sucks. The pain is still fairly severe from the surgery, but I am sure that will get better soon.

I guess in a nutshell what I can say is that I am having a little bit of trouble keeping up the optimistic attitude for this long. To put it bluntly, this whole ordeal has sucked. But I just keep telling myself how lucky I am to be alive, how lucky I am that my health isn't worse, and that things will only get better from here. And hey, it's really sunny and warm outside and I'm not in the hospital anymore, so that's enough to put a smile on my face for a while!

Saturday, June 25, 2011

Liquids Today! Yay!

Ok. I've stopped using my pain button for the most part so I'm feeling a bit more clearheaded. They will be moving me onto a clear liquid diet this morning and if all goes well I will be venturing into solid, low-residue foods tonight or tomorrow morning. They said I have progressed very quickly, which is good, but because of my history they are a little hesitant to consider a Sunday discharge so it still looks like Monday will be the day. I haven't eaten since Tuesday so I am very excited to get some jello this morning! Because I haven't eaten solids yet, I am still not totally familiar with how the J-Pouch is going to be so I am a little nervous for food but, ultimately, I am too hungry to not want it! The pain is pretty manageable today (Day 2 Post-Op) without any medication, so I've asked them to switch me over to just Tylenol rather than going on the Dilaudid orally.

So, as I mentioned yesterday, I wanted to talk about my experience on Tuesday with the pouchagram (a procedure whereby they insert contrast into your J-Pouch and take a series of X-Rays to eliminate the possibility that your pouch has any leaks before surgery). I had read in another patient's blog that he had a bit of trouble with the pouchagram and so I ran this by my surgeon, asking him if I will need to tell the technicians exactly what they will be doing. He laughed at me and said, "look, there are a lot of hospitals around the country that are starting to do this surgery that have no business doing surgeries that are this technical, but I assure you the technicians at North Shore will be competent."

Well, for as often as he is right, he was wrong this time. I walked into the Registration area and told them I was there for a pouchagram. They looked at me like I was crazy. "OK, this is just registration. Of course they wouldn't know what a pouchagram is," I told myself. About a half an hour later I get into the X-Ray room and I see the technicians playing with some pretty large tools. I felt compelled to let them know at this point that I don't have a colon. "What? What do you mean you don't have a colon?' they asked. "Um, well, they took that out. And while we're on the subject I guess I should tell you that I don't have a rectum either." All three of them began to whisper and then left the room, saying they needed to conference with the attending physician.

When they came back in they were with a resident who had a large syringe in her hand. All three of them gathered around me and the resident asked if I could undo my ostomy belt (a belt I would wear around my waist to keep the appliance flatter against my abdomen). I said sure but asked why. She said, "Oh, well we would have to take it off anyway." I thought that was strange since there was no metal on it, but obeyed and took the belt off. Then she proceeded to ask if my bag snapped off. This is when I started to get freaked out. "Well, yes, it does snap off, but why would you need to snap it off?" I asked. "Well, we need to inject the dye through your stoma."I quickly wrapped the blankets around me and shot up from the metal board I was laying on. "You do know that I have a loop ileostomy, right? And, if I am correct and know my new anatomy, my stoma is not a direct port of access to my pouch and if you were to inject dye into my stoma, it would not reach that area. So, then, how would you take X-Rays with contrast of my pouch by injecting the dye into my stoma?" All three of them looked at each other and then said they needed to go speak with the attending again. They came back and said "you were right! We will have to go in through the other end."

Now, I tell this story because this is not the first time I have heard of people having trouble with the pouchagram. Even though I was at one of the leading hospitals for the ileo-anal-pouch anastamosis (the part of my first surgery that refers to the creation of the pouch), the technicians had no experience with the pouchagram. This should just be a lesson to all….know your anatomy and know what is going on with your body, because you can't count on the fact that your doctors and other health professionals will!

And I am sure you are all sick of me saying this, but please come out to support our show "Guitars for Guts: A Benefit Concert for the Crohn's and Colitis Foundation of America!" on Sunday August 14th. Tickets can be purchased by clicking the link above. And if you can't attend, please consider making a donation to the CCFA through our fundraiser "Guitars for Guts" on the CCFA website. Thank you in advance for your support!

Friday, June 24, 2011

Day 1 Post-Op!

Just sat up in the chair for the first time. My blood pressure is running too low again so I am not able to walk yet, but slowly making progress here. The procedure went great yesterday and only took a total of 1.5 hours. It is now Day 3 of no food and Day 2 of no drinks so I'm hoping that once I am on food an liquids again my blood pressure will go back up to a normal range.

It's been pretty hectic here. As I know my mom mentioned, my grandmother had surgery at the same time as me yesterday, just a floor below my OR in the same hospital. She was discharged this morning and came up to see me and then passed out on my floor so she is now back in the ER and they are doing an EKG. Really hoping she is OK but since I am not able to leave my room I don't really know what is going on so I am getting pretty anxious. My mom also found out that she needs to have her ovaries removed in two weeks, so I am really hoping to be recovered by then so I can be her caretaker! Leaving it up to the men could be tragic! So, ironically, the biggest stressors in my life right now have to do with everyone else's health!

I was in the PACU for 12 hours yesterday and "apparently" I stopped breathing in my sleep, so my nurse was really angry with me for pressing my pain button too much and took it away from me! (I wasn't really aware I could OD on the pain meds since I was told in the recovery room that I could press it as much as I want). So i sat there for 4 hours without my pain button, crying from the severe pain while he just watched it all from afar and they wouldn't even let my family in! Will be putting in a complaint about that guy…

Other than that everything is going really well. I just met with the ostomy nurse to go over the usage of my new organ. She said it could 6 months- 1 year before I have total control which is a little disconcerting to hear. As soon as my bowels "wake up" I will be able to start on liquids and then a day later, foods, and then I can be discharged the following day. I am really hoping for a Monday discharge, but in light of all the problems I had last time with my bowels waking up and the blockages, they said they will be extra-precautious with me this time (as hungry as I am waiting an extra day to eat and avoiding the NG tube sounds just fine to me!). I also must say that having the Dilaudid go to my head is a good thing (last time the epidural kept it localized). I am sleeping A LOT which makes the time go faster and the hunger pains less intense. Although, the pain in my abdomen is a bit more severe because of the lack of epidural.

I actually wanted to also give an update about my experience getting my pouchagram on Tuesday for anyone that might be going through these procedures, but I am kind of super out of it so I'll explain that in my next post.

Oh and pretty please come to our show, Guitars for Guts, on August 14th! See earlier blog posts from June for more info on attending or making a quick donation for the cause! Thank you in advance for you support…it means the world to me and to others suffering from Crohn's and Colitis!

Thursday, June 23, 2011

2nd Stage Done!

Hi Everyone,
Katie underwent the take-down procedure this morning for her J-Pouch surgery uneventfully.  Dr. Proc
even told the anesthesiologists and assistants how lucky they were to be working with her.  She is
resting comfortably in the PACU (recovery room) waiting for a bed to become available.

An interesting twist to today's events is the fact that Katie's grandmother was admitted to the same
hospital this morning and underwent a cardiac catheterization with stent placement due to a blocked
artery.  Katie who will be here for approximately six days asked if they might be roommates.  When
we told her Nanny would probably be going home the same day, (in the haze of her anesthesia) just
replied "bitch".   Anyway, we know she still has her sense of humor and will be back on her feet

I'm sure she will be up to writing within a day or two, so keep checking back.

Thank you all for your support through this long ordeal.  It means a lot to Katie and to our
entire family.

Mary Boccard
(Katie's mom)

Monday, June 20, 2011

3 More Days! / Guitars for Guts Donations

Well….3 more days! The closer the surgery date gets, the more nervous I am. Although this surgery is not as major as the first, the thought of hopping onto that skinny little operating table and waking up in a hospital bed still intimidates me, especially after having been there only three months ago. I have also (strangely enough) become fairly attached to my ileostomy. I have been feeling fantastic this last month or so thanks to this strange thing on the side of my abdomen. Getting rid of it is a little scary. That said, a big part of me can't wait to get rid of it. The whole surgery thing is much like moving and attending a new Junior High school. The prospect of new beginnings is always exciting, but there is also a significant element of fear of the unknown. The ileostomy has become my comfort zone and the j-pouch is kind of like that hot 8th grader that might ask me out, but he also might humiliate me. I just have to keep remembering that I can always return to that comfort zone and that is not a terrible worst-case-scenario.

We have also created a donation site for our event via the CCFA website. If you are not able to attend our Sunday, August 14th event at the Music Hall of Williamsburg, please consider making a donation directly to the CCFA through our event website. All donations would be so very gratefully appreciated!!

I may or may not blog before my surgery Thursday morning, but if you don't hear from me, keep an eye out for a post from my family on Thursday!

Friday, June 17, 2011

Pre-Op Thoughts

In less than one week I will be ostomy-free. Very exciting. In less than one week, I'll be back in the hospital. Bummer. I am having a lot of mixed feelings about this upcoming surgery. Though I am very much looking forward to not having an ileostomy any longer, I also have this nagging feeling that I should not put my body through any surgeries that are not 100% medically necessary. I could live the rest of my life with the ileostomy. It could actually be a very fulfilling one at that. So why risk it?

I guess the #1 reason why I am choosing to have this procedure is because the ileostomy is getting to be a pain. If I leave the house without my ostomy supplies (in case of leakage or emergencies), I begin to get anxiety similar to the anxiousness I would suffer when I had U.C, and I am not very good at remembering them. This past week I have had a terribly itchy and painful yeast infection at the ostomy site and it is proving very difficult to get rid of. I have been so uncomfortable that getting more than an hour or two of sleep has proved impossible. I have been told by my doctors that these are very common, especially in the summer. Your skin never has a chance to breathe since your ostomy appliance must be on 24/7, and this leads to a lot of moisture getting trapped inside. I also find it difficult to be away from a bathroom for longer than a few hours. While out running errands yesterday, I looked down to see a huge bulge on the right side of my abdomen. The bag was very full and since I have no feeling in my stoma, I had simply forgotten about it as I went about my busy day. While this is not a medical emergency, it is very embarrassing and it happens often.

So while this surgery isn't completely necessary, I do think I will have a chance at having an even greater quality of life after it is done and I find the prospect of this "new me" to be very exciting. I will be as close to my pre-Ulcerative Colitis self as I could ever hope to be, and I'd be crazy to not want that. Many people have asked me what the recovery time is from this next surgery and what my new body will be like. My surgeon has told me that after 2 weeks I would be able to return to work (but I lost my job because of all this, so that isn't really pertinent information for me!). The hospital stay should be 5-6 days. But getting used to my new organ will take much longer. After talking to other J-Pouchers, I have been told I can expect to spend the next 3-4 months re-learning how to use my muscles in that region, learning what I can and can't eat, and allowing the J-Pouch to stretch and expand naturally. When all is said and done, I will have to use the bathroom 6-10 times/day (it can take up to 1 year for the J-Pouch to reach it's full potential). So, from what I have been told, I will be back on my feet much quicker after this surgery, but will also be back in the bathroom quite a lot for a while. I have also heard that it is a more emotionally-distressing surgery. After surgery #1 you go from being very sick from your diseased colon to never having the urgency to use the bathroom at all. After surgery #2 you experience UC-like symptoms for a period of time, something that is not very easy to wrap your head around after going through a great deal to live a UC-free life.

Well, I'll know from first-hand experience soon enough! Oh, and get your tickets to our CCFA Benefit Concert at the Music Hall of Williamsburg!

Wednesday, June 15, 2011

Annnd, it's launched!

It is with great pride and pleasure that I announce to you the launch of our Sunday, August 14th event at the Music Hall of Williamsburg, "Guitars for Guts: A Benefit Concert for the Crohn's and Colitis Foundation of America." Tickets go on sale at noon tomorrow (Thursday, June 16th). Simply click on the link above to purchase tickets!

We have been hard at work organizing this event and are so honored and excited to have Iris and her band, ROADS, coming down from Canada to be our headliners for this show. My brother's band, the alphabets, will be opening for ROADS and we even have another band joining in on the fun, TBA very soon!
As many of you know, this event is one of great personal importance to myself, the alphabets (of which my brother is the lead guitarist and singer), and the members of ROADS band. After nine years of battling Ulcerative Colitis, a debilitating gastrointestinal disease, I was left with no other choice but to have the entirety of my large intestine and rectum removed, a major operation that was not without many complications. I will soon undergo a second surgery to reverse the ileostomy that I was left with after the first procedure. For more about my personal story, please see earlier posts on my blog.

Iris Campo, the drummer and backup singer of ROADS, has a similar story to tell. After being confronted with a life-threatening complication of Ulcerative Colitis, toxic megacolon, Iris was given 2 hours to decide whether to undergo a panproctocolectomy to remove her large intestine and rectum and was told that she would inevitably get peritonitis, a deadly infection of the abdomen, if she did not undergo the procedure. Because Iris was so ill at the time of her first surgery, she was left with no other choice but to undergo three surgeries over the course of six months. Please see Iris' Video Blogs on YouTube.

Iris and myself are just two cases out of the 1 million people that are suffering from Crohn's disease or Ulcerative Colitis in North America today. Mothers are too ill to take care of their children, adolescents are too sick to grow and children and adults alike are confined to their houses or hospital beds for years on end because of these extremely debilitating diseases. Please join us on August 14th to create a night we can all remember and help us in the fight to cure Crohn's and Colitis!

Thank you in advance for your support and we hope to see you in August!

Friday, June 10, 2011

Busy Bee and Surgery

This week was full of doctor's appointments, but I received nothing but good news from all. After Tuesday's CT Scan, my vascular surgeon called to say the blood clots were cleared. Upon meeting with my GI doctor on Thursday, I was told that the clots cleared in the most optimal way; they were dissolved rather than recanalized. Dr. Eskreis (my GI doc) always scribbles little instructions on a pad when I leave his office. At the end of yesterday's note he wrote, "See you in the hospital!" Of course, receiving this great news about the blood clots meant that my surgery would happen on time and I was able to schedule that surgery today while meeting with my colorectal surgeon, good ole' Dr. Procaccino. The surgery is scheduled for 7:30 am on Thursday, June 23rd. The next two weeks will be full of more doctor's appointments and procedures to prepare for the surgery, but as long as those all go well (which I of course expect them to!), I will be all set to eagerly enter the O.R. in just under two week's time.

I told Dr. Procaccino this morning of a horribly embarassing dream I had last night and explained that it was a good thing my surgery was going to happen on time. I dreamt that I was on the beach in a bikini and looked down to see my ostomy bag. Apparently I had forgotten about this apparatus attached to my abdomen and was caught on the beach with no cover and all to see! After hearing my story and doubling over in laughter, he sarcastically asked if I wanted this second surgery. I replied, "Dr. Procaccino, it's time."

Dr. Procaccino has maintained a great sense of humor throughout this process and the power of laughter is not to be underestimated. This morning he had to perform a short (but painful) procedure and I was a bit nervous so right before he started I asked, "Is this going to be unpleasant?" He jestfully responded, "If it is pleasant, I am going to think there is something wrong with you." My chuckle at his response lasted just long enough to divert my anxiety.

It has been almost three months since my first surgery and I am really starting to feel incredibly healthy and energetic, so the fact that I have to go back to the O.R. and start over again is a little disconcerting. However, I am EXTREMELY excited to be done with the ileostomy. That said, it has treated me well and if it had been permanent I would have preferred it far and away to the terrible alternative of living with U.C. I feel very fortunate that I will be able to live with a J-Pouch, but if for some reason the J-Pouch doesn't work out, I now know I can live a very happy and fulfilling life with an ileostomy.

Please stay tuned for the launch of our August 14 CCFA concert event! Tickets will be available through the Music Hall of Williamsburg website which uses Ticketmaster. We hope to have this open on Monday!

Tuesday, June 7, 2011


Great news!! Actually, TWO topics of great news!

First off, we have finally booked the venue for our CCFA concert fundraiser!! We will be hosting the event from 3-7pm on Sunday, August 14th at the Music Hall of Williamsburg !! We are VERY excited about getting this venue. Please tune in to my blog posts for more information on buying tickets, which we hope to have posted by week's end. This event is a very, very special event to me as it will mark not only the end of my struggle with U.C. and the beginning of a new life, but will ALSO bring Iris Campo and her band, Roads, to NY to play for the event and I will finally get to hear her rock out. Iris also suffered from U.C. and after a scare with toxic megacolon, she met the same fate as myself and underwent three surgeries last year to remove her colon and create her J-Pouch. Having the opportunity to hear Iris play live (and hence, watching her overcome such an enormous struggle), will be a very moving moment for me, and I hope you all will be able to come see her play too. My brother's band, The Alphabets, will also be playing at the event and, hence, all of the musicians that are coming together to play on August 14th have been touched by this disease and will be performing for this common cause. I REALLY, REALLY hope to draw a big crowd and be able to raise money for CCFA so that others who suffer from Crohn's and U.C. might be able to live happier, healthier and more fulfilling lives.

Now, as if finally booking a venue wasn't enough good news for today, I also had my CT Scan this morning and got fabulous results this afternoon. THE BLOOD CLOTS ARE GONE!!! I will only have to continue on Coumadin for another two weeks or so until my next surgery, which I should be able to schedule this upcoming Friday when I meet with my surgeon. So stay tuned, and later this week I should have a surgery date and a link to Ticketmaster where you will be able to purchase tickets for our exceptionally exciting concert fundraiser in August!!

Monday, May 30, 2011

Pet Therapy

As I mentioned in one of my earlier blogs, I was hospitalized just a few days after my college graduation due to a severe flare of Ulcerative Colitis. I had been wanting a puppy for quite some time, and thought that this hospitalization was the perfect opportunity to guilt my Dad into buying me one. "Those dogs need help just like I need help right now, Dad," I would say. "I would not just be saving a dog, the dog would be saving me too." While in the middle of one of my infamous guilt trips, my middle-aged and puppy-eyed nurse who just happened to suffer from Crohn's disease herself chimed in, "I saved a dog three years ago and I have been in remission ever since," she turned to my Dad, "haven't you ever heard of pet therapy?" That sealed the deal.

I convinced my father to stop by North Shore Animal League, the nation's largest no-kill shelter, immediately after my discharge from the hospital. With my hospital bracelet still attached and an indelible smile painted on my face, I walked as quickly as I could into the shelter. A small, 10-week old beagle puppy caught my eye and I was sure she was the one. I reached down to save her from her cage, only to find that I was too weak to lift the 6-pound pup. "I think we'll have to come back another time," my father lamented. I huffed and I puffed, but I ultimately relinquished my hopes of bringing home a new member of the family. For now.

It was just a few weeks later when we returned to North Shore Animal League. It was on this trip that I met the love of my life, la Figlia Mia. While I can't say that I have been in remission ever since bringing Figlia home, I can say that I am able to cope with and manage my disease at a level that I hadn't been able to before she became a part of my life. We walk together, which helps me to recover. We play together, which gives me an always-effective dose of laughter. Whenever I cry, she licks away my tears and whenever I laugh she is there to join in my happiness. She needs her belly rubbed every morning, even when I am too sick to get out of my bed, and it is perhaps this fact more than any other that I enjoy; knowing that even when I am relying on others, someone still needs me. Figlia may not be able to cure my disease or prevent side effects and surgical complications, but she gives me something much more important; unconditional love.

As I sit here with my canine friend, 8.5 weeks post-op and 3.5 weeks pre-op (though my second surgery date is yet to be confirmed), I question whether I want to go through another surgery, another hospitalization, and another recovery. My ileostomy has allowed me the freedom, peace of mind, and health that I have been unable to experience in nearly a decade. Yes, it leaks on occasion. Yes, it is a pain to change the ostomy. And, no, I am still not used to seeing my intestine sticking through my abdomen. But would I have it any other way? No. I am so lucky to have my body back, to have my health back and I am not so sure I want to risk complicating that with another procedure. Will I go through with it? Probably, because bag or no bag, Figlia will love me just the same.

Friday, May 20, 2011

How it Feels to be 7-weeks Post-Op

I realized it's been a few weeks since I have given a status update on my condition. I saw Dr. Procaccino (my surgeon) a week ago for a follow-up sigmoidoscopy to see how the J-Pouch is healing. While this was one of the more unpleasant procedures I have had in a while (think raw scar tissue from a freshly-created organ), the prognosis was very promising. The J-Pouch is looking "perfect" as Dr. Procaccino said, and we will be doing another follow-up procedure the first week of June to determine whether the J-Pouch is ready to be used. This will entail injecting dye into the J-Pouch and then a subsequent X-Ray to show whether the J-Pouch has any leaks. If all goes well, I will be ready for Surgery #2 (from a colorectal point of view).

I also saw my vascular surgeon (Dr. Krisnasastry) last week for a follow-up on the PVT (blood clots). I begged him to let me have my next surgery at the end of June since I want to be streamlined and bag-less for my October wedding. He found that funny. "We all wish that things would go perfectly, but sometimes they don't," he reminded me with a chuckle. Though he didn't make any promises, he did make a few concessions. He moved up the follow-up CT Scan to the first week of June and said if the PVTs showed any sign of resolution he would allow me to have my next surgery at the end of June. He added that there was almost no chance they would be completely resolved or recanalized, as PVTs take at least three months to begin this process. However, he would not be looking for complete resolution at this point and he would feel confident going into my next procedure as long as the PVTs looked better than they did in the first CT Scans. The issue of whether I will remain on the Coumadin for 3 months, 6 months, or indefinitely will also be determined at this juncture.

Physically, I am feeling great. Dr. Procaccino said to me last week, "I told you that you would be feeling well after 6 weeks!" I said, "Hell, I was feeling great at 4!" I have been very happy with my recovery from this first surgery, but I must say it takes work. I have been walking every single day at least 1.5 miles since week 4 (I was told by my doctors that walking will speed recovery). I have been scrupulous about not lifting anything heavy (more than 5-10lbs.) and have made sure to get a lot of sleep. I still have minimal pain and discomfort in my abdomen and I feel considerably more fatigued at the end of the day than I did pre-op, but these are my only complaints. Overall, I feel much healthier and happier than I did living with U.C. and, despite the complications from the surgery, I am very happy that I followed through with the panproctocolectomy.

As far as our CCFA Benefit Concert goes, we are hard at work pulling together the details and are on the brink of confirming a venue. I'll keep you all on your toes, but hope to reveal the location by this weekend or early next week!

Tuesday, May 17, 2011

Benefit for CCFA!

Progress has been made regarding our CCFA( Crohns & Colitis Foundation of America ) benefit concert, featuring Iris' band Roads and my brother Mark's band The Alphabets. Our tentative date is Sunday, August please put this on your calendar! We will be booking a venue sometime this week and the concert will be hosted either on Long Island or in Manhattan. The official location will be revealed in my next blog, but we have quite a few exciting venues that we are considering!

If anyone is interested in sponsoring or assisting with the event, any help would be warmly welcomed and sincerely appreciated! I can be contacted by email :

We are very excited about the fundraiser and we hope all can attend! Spread the word!

Sunday, May 15, 2011

Convalescent Ruminations

I met a good childhood friend for lunch earlier in the week and he asked how my fiance Billy has been handling my surgery and how he coped with my disease. I responded by telling him how incredible Billy is and how he has been my rock (not to be cliche). My friend reminded me at this point how lucky I was to have such a guy and gently mentioned how most guys wouldn't be so strong and so faithful, how many people run away from challenges such as these and abandon those they most love. "Maybe people just have bad hearts," he concluded, "but I'm just not sure." We parted ways at this point, but his words stuck with me.

Truth is, I AM lucky to have such a steady, caring and patient man to share the rest of my life with. I adamantly believe that it is more challenging and difficult to be the caretaker of a sick loved one than it is to be the one who is ill. Billy and I are both so lucky to finally be rid of this disease and we are both looking forward to our new life together. Upon completing my surgery, Dr. Procaccino met with my parents and Billy while I was in the recovery room. He turned to Billy and said, "Everything went perfectly. Her colon was very, very diseased and I want you to know that she made the right choice. Your life together is going to be so much better because she made this decision." But this wasn't a choice I could have made alone. I have been incredibly lucky to have such a strong and reliable support network of not only Billy, my parents and my brother, but also my friends, family and even other Crohn's and Colitis patients that have been able to personally relate to me. Knowing that Billy would be by my side no matter what, having my Mom and Dad and brother next to my side 24/7 at the hospital, talking to several other panproctocolectomy patients that assured me the grass was greener without a colon. I couldn't have made this life-changing decision without each of them.

The grass is certainly greener, the sun is brighter, and the sky is bluer. Maybe it's because I am finally able to see the grass and look at the sky because I no longer live in a bathroom. But it's also because living with this disease and beating the constant challenges it has thrown my way has taught me of the delicacy of life and has endowed me with a much greater appreciation for my health than I ever could have hoped to experience if I hadn't stumbled into this hurdle called U.C. For all you Crohn's and Colitis patients out there, take advantage of the sunny days and don't lose hope during the cloudy ones. The rain can only last so long.

Wednesday, May 11, 2011

Remicade & The Super-Bug

I had my first infusion of Remicade in December of 2009. I was still on Prednisone at this point and had just finished a two-month course of Flagyl and Vancomycin, antibiotics that were used in tandem to treat a resilient C-Difficil infection. C-Difficil is a bacterial infection that causes symptoms that are virtually identical to U.C. symptoms and therefore often go undetected for dangerously long periods of time in IBD patients. Ulcerative Colitis and Crohn's patients are the only people on earth who are able to develop spontaneous C.Difficil infections as they are otherwise only caused by antibiotics or are transmitted, generally in a hospital setting. This was not my first encounter with C.Difficil, but now that I am cured of Ulcerative Colitis and no longer have a colon, I can safely say that it was my last.

Once the C.Diff was cleared I was able to "safely" begin my treatments with Remicade. Remicade is a TNF-blocker (tumor necrosis factor) that is administered via I.V. over the course of several hours. U.C. patients have elevated levels of TNF, a cytokine that causes inflammation. It functions by inhibiting the TNF response in the body's immune system. Remicade can be a wonder drug, and it allowed me to live blissfully in remission for the longest period of time in 9 years. But users should be wary. While fairly rare, Remicade has been found to cause leukemia, lymphoma, lupus, congestive heart failure, and other serious diseases and side effects. It has been more commonly linked with respiratory illnesses, such as tuberculosis, and so Remicade patients must be tested for T.B. regularly. Serious allergic reactions to Remicade are not exceedingly rare and chronic sinus infections and mild bronchial infections are quite common. Because of the considerable dangers of using this drug, Remicade is only administered as a last-ditch effort before surgery becomes imminently necessary.

On a more practical note, Remicade is simply a pain. Because it is administered intravenously, you become a prisoner to a hospital or clinic's 9-5, Monday-Friday schedule. If you are a working woman/man, this can become quite taxing. Infusions are generally given every 6-8 weeks (initially it is spaced every 2 weeks, then 4 weeks until you reach a therapeutic level). I personally found it difficult having to take a half or full day off of work this frequently.

Around December of 2010 my U.C. became symptomatic yet again. I had hoped that my upcoming Remicade infusion in January would set everything straight. It didn't. I became increasingly worse over the next eight weeks until my next infusion in March of 2011. At this point I was feeling very run down as it had been over two months of active U.C. symptoms. I knew that a lot depended on this infusion. If it didn't work, I would be back on Prednisone at best, and in surgery at worst. About twenty minutes into the infusion I felt like I was suddenly hit with a ton of bricks. I went into anaphylactic shock. Within seconds a team of nurses and doctors were at my side. They immediately stopped the Remicade infusion and administered Benadryl into the I.V. Within minutes I was stabilized. When normal breathing returned it was quickly accompanied by an almost convulsive bout of crying. I was scared. The first thing I was able to think of was the fact that this was the end of the road for me. I was going to need surgery. I pictured the ostomy bag on my side, which I knew was imminent. I thought of the life-threatening allergic reaction I had just endured. I thought of the fact that I had just subjected my body to nine years of risky medicinal treatments and had suffered from this disease for almost a decade...and for what? I had lost this battle.

Surgeons will only perform a panproctocoletomy for four reasons: 1. the patient has colon cancer that is unresponsive to chemotherapy or radiation treatments 2. in pediatric cases where a Crohn's or U.C. patient is unable to grow because of severe vitamin deficiencies 3. toxic megacolon 4. a U.C. patient has run through all possible medicinal treatment options. While I appreciate this conservative approach to surgery, I can't help but be somewhat critical of it. If I had undergone these surgeries nine years ago, would I now have healthy kidneys? Would my hands be free of dysplasia? Would I not have to worry about all the long-term effects of prolonged steroid use? What would I have accomplished or experienced in all those years I was so ill?

These questions will probably always be lingering in the back of my mind. There is a fine line between optimism and denial, and I do not want to breach it. For now, I am focusing on how lucky I am to have had this surgery, how lucky I am to be alive, and how excited I am by all the thing I will accomplish and experience in the future because I was able to have these surgeries.