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!!