Part Thirteen: I Will Be Home Then

I'm sitting here with a Cat 1 hurricane on course, set to hit the ol' 603 within hours. Kelley's pretty stressed about it but I welcome the storm. We haven't had a decent hurricane in New Hampshire for a few years so I say bring it Bill Gates and your evil weather machines! (It is fairly common knowledge that Mr. Microsoft controls the weather with satellites and such, right?)

I've been home for a few days now from my latest Lahey adventure, closing in on nearly four weeks. What started out as fairly routine and simple ended up being a big ol' bag of awful by the midpoint. I was initially down there to drain a fistula that developed starting from my left flank and going down to my groin. (A fistula is a long, snake-like collection of fluid rather than just a normal globular abscess.) Most people with pancreatitis have pockets of fluid that develop, get drained and that's all she wrote. In my case fluid just keeps coming and coming with no real endpoint in sight. At one point one of my doctors at Wentworth-Douglas said that I have one of the worst cases of the disease he's ever seen. I'm inclined to agree because as time goes on I don't seem to be making much headway. All told I've had nine or ten separate Jackson Pratt drains throughout my abdomen and left flank. Currently I'm only sporting one that is draining an abscess on my right side. It's awkward because the JP bulb is attached to my leg rather than its usual spot on my stomach. Why? Well that's the fun part...

A few days into my stay at Lahey I had a date with Interventional Radiology to put more JP drains in place to deal with the fistula. What they do is put me through a CT scan machine to get an accurate, real-time picture of where the fluid is so they know exactly where to cut me open and place the drain tubes. You may forget (or remember) that your organs are all more or less on top of each other in your body so you want and need to have doctors be as accurate as possible whenever they mess about in there. I trust my doctors, especially those at Lahey implicitly because I have yet to have a bad experience. Cue the chase music...

After I made it back up to my room sporting two brand spankin' new drains my stomach was really upset and I had a pretty hardcore bout of vomiting. Nothing special, right? Well, this time it was pretty special. At times when I vomit the physical process of vomiting makes my other organs and insides do crazy stuff like spit fluid out of my drain sites. This time was particularly interesting because after I got up to void (aka pee) I looked at my bed and it was covered in the nastiest fluid/junk that I've ever seen come out of me. It was pretty viscous, rusty brown color and unappetizing. The dressing around my left flank drain was soaked with this nasty fluid. I called in the nurse who immediately called in the doctors because that kind of thing shouldn't happen nor should the fluid look as it did. Dr. Babek from the transplant team immediately recognized it as fecal matter mixed in with my normal necrotic pancreas fluid. Uh oh, something is not right in Paddy's body. Another CT scan later and what do we find? Paddy's colon has been pierced/cut/sliced open and waste is leeching into my abdominal cavity. Verdict? Not good at all. One thing you never want is waste mingling where it doesn't belong because that can lead to sepsis and becoming very, very ill or even dying. I've been through enough this year that could have killed me so I'm not ready to let that happen. When we realized what happened they shipped me down a few floors back to my old home, SICU.

SICU is a world unto itself at Lahey Clinic. Visiting hours are different, you're hooked up to all sorts of monitors and machines 24/7 and the TV is free. (In the normal rooms they charge you $12.50 per 24 hours of television. I read a lot in hospitals.) I spent weeks there in January after my very messy surgery and as fate would have it they put me in the same room that I stayed in originally, with the same nurses. Needless to say there was a lot of "Hey, you look a lot better than last time" and "What are you doing back here?" Really, SICU isn't much different from the normal hospital save for the things I mentioned above though this time they gave me something new to contend with. Usually for pain meds I would get 1-2 mg of dilaudid every 2-4 hours so I wouldn't be too uncomfortable but this time they decided to switch it up by making my meds PCA or more or less under my control. They added a part to my IV setup where I would control the frequency of my pain meds which worried me at first. Would I use too much? Not enough? They assured me it's a better setup than what I was doing before and it turned out they were right. My setup was for .4 mg every ten minutes (if I chose to take it via a button press.) That dose is enough to ease the pain but not enough to make me feel loopy so I ended up agreeing that it was a better system.

To deal with this new issue I was introduced to the colo-rectal doctor team headed by Dr. Pete Marcello. It turns out he and Dr. Pomposelli are longtime friends and went to the same school, had residency at the same time, etc. He's a very straight shooter and like Dr. Pomposelli doesn't BS or gloss anything over. He laid out what happened (the IR team accidentally pierced my colon either with a needle or the drain itself when they put in my new drains, spilling waste into my abdomen) and our options to deal with it. Our first attempt at fixing the problem involved cleaning out the existing waste and seeing if my colon would heal itself. That didn't work so well. On to option B, colon reassignment surgery. Or was it realignment? I can't remember. Basically what they had to do was go in, cut out a section of my colon, clean out my cavity, and bring my colon up to the skin, meeting up with my new friend: the colostomy bag. I'm told this will be a three to six month process so for the foreseeable future I don't digest or process food normally and instead of things travelling through my colon like a normal person my waste travels into a colostomy bag. It sounds more gross than it actually is but still, for all intents and purposes I have a bag of poop hanging out of my stomach. Oddly enough I can still have bowel movements but 99% of the waste and gas ends up in the bag. Along with this new piece of equipment comes a new diet, low-res/low-fiber. It's like a fat kid's dream diet because I'm not really allowed to eat anything good like whole grains, most fresh raw vegetables and fruit, oats, nuts, beans/legumes, (all of the things that I love to eat) and instead they want me to eat garbage with little to no nutritional value. Dr. Marcello also told me that due to this current colon setup I don't process fats, cholesterol, calories, etc. like normal but in a "good" way. He wants me eating like a fat kid and even told me to eat a cheeseburger when I got out of the hospital. Again, fat kids' dream diet but not my cup of tea. I'd rather have delicious whole foods not processed garbage. Fortunately it's only for a few months.

Speaking of fat kid stuff I'm now 166.5 pounds. Craziness. That's the lightest I've been since I was 13 or so. That puts my weight loss from the start of this adventure to now at about 75 pounds, give or take a few pounds. I'm happy for the svelte physique but it was an extreme way to get it. When I start working out again I'm hoping I can get down to a trim 155 or so while 175 is my new "fattest you'll be" plateau. Shouldn't be too difficult though because my appetite is a fraction of what it once was, I no longer get the thousands of empty calories I used to get from alcohol and I eat pretty sensibly, even with the new diet. Add that to a decent workout regimen and I should be ok.

There is a lot more to write about regarding this and all of my hospital stays but I'll leave that for future posts. I'm getting things ready for the hurricane and taking some much-needed rest. Lateron.

Quick pic update!

Here are some glamour shots of my new abdominal incision. Almost identical to the first one which is probably why the pain is so exhausting and extensive.

Plus who doesn't dig staples in their stomachs?

Real posts when I get home, kiddos. Loads of stories about my latest Lahey adventure.