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!