Fighting Crohns

I’m not going to lie, everything has been pretty chaotic the last few weeks. I moved to Brooklyn to start my internship and as you’d expect I haven’t been able to sleep much with all of the work going on.

I’m doing my best to eat well, although I admit that I haven’t eaten anywhere close to the amount of vegetables that I should. But I do have an apple sitting next to me right now and I do plan on eating it once the taste of iced tea and lemonade leaves my mouth.

I’ve also been pretty good with exercising/working out. Living in Brooklyn and working in NYC I get a fiar amount of walking in each day, I try to hit different areas with the resistance bands at home or pick up the free weights and I’m doing a little bit for my abs although I’m still not pressing them too much because the concept of having my insides sown together makes me worried I could rip apart the doctors work and that’d be bad.

So from a purely emotion state I feel pretty good about how I’m doing and will feel a lot better once I get to the store and pick up some form of fruit/vegetables to supplement all the protein I’m making sure that I get by eating fish. The unfortunate part is that I don’t think my roommates have a scale so I can’t really say with any certainty that I’m closer to my goal of 150. But I am seeing visible changes.

Not to sound like a d’bag though, but my arms and shoulders look better than they have in years. So for now, I’m cool with that.

Even before I was diagnosed with Crohns 12 years ago I had a thin (although I prefer to think of it as ‘slender’) frame. So without the extra help from Crohns, in the form of not being able to eat a full days worth of meals and of course the frequent re-tasting of foods that usually afflicted me, I’ve always been a bit of a literal lightweight (my Irish/Italian heritage however has meant that when I am healthy enough to drink alcohol, I can handle my own. But I digress).

So I’ve never weighed all that much and in fact have probably been underweight most of my life, even when I wasn’t struck with obvious and painful symptoms. During my first round of treatments for Crohns as a teenager I was placed on prednisone and reached my all-time highest weight - 145lbs. However, it included chipmunk cheeks and some unsightly (even if only temporary) fat flabs. Subsequent rounds of prednisone had also gotten me up above 140 but once the treatment ended, I sank back down. One time all the way to 115lbs.

Now, coming off of my 4 surgeries and feeling good, I’m on a quest to do what I have never done before in my life - weigh a healthy 150lbs (in the range for a guy of my height). I know that it’s going to be a challenge, especially the ‘healthy’ part. I could easily eat 3,500 calories of fast food or whatever and get to 150lbs, but then heart disease would make the whole thing irrelevant. No, I want to weight what a man my size should weigh, and look damn good doing it.

So here goes. I’m going to brush up on nutrition (I’m not going vegetarian or any weird diet, and I’m not forgoing red meat or anything I consider drastic, but I am going to work on a better balance) and get back to working out, starting slow at first but hopefully ramping up quickly. It’s my new challenge and it may take some time, it probably won’t be easy, but I’m going to do it, because the hidden blessing in my past experiences is that I know I can overcome and I know that I’m capable of great things.

Tonight’s weigh it - 136.4 lbs.

Last Thursday I met with my surgeon for a check-up to see how my wound (and the rest of my body) was healing. It turned out to be far different from what I thought. He checked on my wound, asked me how my digestive functions were progressing and then declared “well, I don’t think I need to see you again”. It caught me off guard but then the realization hit me that I was pronounced “healthy” by a medical professional.

I thanked him and shook his hand. On the way out I got a big hug from his nurse and danced a little jig on the way to the elevator.

Friday, I went and got my 3rd of 4 B-12 shots all in preparation of Saturday night.

A surprise 30th birthday for a good friend of mine and a perfect time to make my return. While the party itself was a surprise to her, seeing me there added a little something extra. Her mom has Crohn’s as well, so she’s been concerned about me and hoping that I’d get better soon - each time only to hear that I need another operation.

Last night I got to answer every instance of “How are you feeling?” with the story of Thursday and how I’ve been cleared by my surgeon. The fact that I was usually answering with a beer in my hand probably didn’t hurt my believability. All in all, while I can’t speak for my friends at the party, I think it’s safe to say that I had that old familiar look from years gone by.

Now it’s fun time.

Slowly but surely it’s starting to come together. Outside of overdoing it with eating tonight, my body has responded pretty well the past couple of days. My wound is getting smaller and my nurse thinks that it’s about 2-3 weeks away from closing up. My digestive system isn’t “normal” yet, but it’s a hell of a lot better than it was when I was sick. My appetite, well that’s a tough one because I stay up late and then sleep in, so I’m not really sure how much I’ve been eating. It seems like I’m doing pretty well.

But now it’s time to start getting prepared, just like players reporting to camp for spring training, my laptop (dead since Surgery #3 last October) arrived in the mail, all fixed up and running like it did before. I even had all of my old post-its on my dashboard, only 10% of which are relevant now. But now that I’ve got that crucial piece I have purpose again - I gotta get my lazy ass ready to go back to school. Now that I have my programs and files I’ve got plenty of reading, side projects and other options to keep me busy. You wouldn’t believe how hard it is to write a story or really anything longer than 4 lines on a 37” screen, it just gets annoying on the eyes. 

So here we go. Armed with my “Rocky II” alarm sound on my cell phone and an entire Google Doc of projects to complete before graduation in June, (and a couple bottles of Mountain Dew) I’m about to get really productive. Technically, I’m supposed to avoid lifting things and strenuous physical activity but I think my body can handle a few push-ups every few hours to introduce it to what’s in store once I get medical clearance. I guess now it’s time to start working on those lists I wrote back in the Fall of 2010 of things to do after my surgery.

Better late than never.

Yup, in only six months from today I’ll be 30 years old. When that happens I’ll have been living with Crohns for only 2 years short of half my life (which means at 32 I’ll really have to celebrate).

I checked in with my surgeon yesterday and am happy to report that things are going well. I’ve added fiber tablets to my usual swarm of pills to help my digestive system get back in sync (no, not going to post another bad pop video) and the soreness is going down. Or at least it was until I nipped some uneven pavement in the Bronx on my way home from the Giants Super Bowl victory parade and went flying forward, twisting in mid air to save my ‘mildly attractive’ face by sacrificing the entire right side of my body. Shoulder and elbow are still pretty banged up but luckily I was milking my percocet prescription and still have some on hand for the pain.

Anyway, that hole in my chest is approximately 3”x5.5”x1.5” according to the visiting nurse who took the measurement the other day, and for the first time ever (with this wound or the one before it from my closed colostomy) I took a look. The surgeon said that I could shower with it exposed because the soap and stuff wouldn’t harm it, so I nervously did and manned up to see for myself what it looks like. I instantly regretted that decision, started to get queasy and decided that I’m never doing that again. To fill you in, but without the gory details - I have a crater in my body and well anything else will make you tummy sick.

Regardless, I’m feeling better and better. I went back to taking Humira today and went for a bit of a walk to get some exercise in. I’m still forbidden from lifting, carrying, stretching and just generally getting in shape, but I’m managing.

I don’t go back to see the surgeon for 3 weeks, so the beginning of March is my next update from him. Monday I’m going to see my GI and see how he reacts to how I look and sound since having the operating in January. And I’m sure he’ll order some blood work, so it won’t be too good of a day.

Maybe the lab tech will be cute.

UPDATE: I forgot to mention the most important part. After seeing the surgeon my mom and I went to lunch (it’s sort of a tradition). Anyway, on the way back home I turned on the radio to the greatest radio station in the country (I know because I drove across America in the summer of 2010) - Q104, New York’s home of classic rock. During our drive home I got one of those messages from the universe. Mine usually come in the form of music because it’s always been such an important part of my life. Anyway after starting off with Bob Seager’s ‘Old Time Rock n’ Roll’ (an obvious attention getter since my name is Bob and I’m approaching 30 and consider most contemporary music to be worthless - I’ll adjust, contemporary rock - there’s really no way to bash contemporary music as a whole almost solely because of Adele) I got the message loud and clear. Thin Lizzy’s “The Boys are Back in Town”. After getting good news from the doc, and starting to feel “right” enough to see that trademark smirk creep back across my face, I know that we’re heading towards some truly incredible times.

The nights are getting warmer, it won’t be long
Won’t be long till summer comes
Now that the boys are here again*

Now that Bob is here again

Earlier tonight I watched the 200th episode of NCIS (one of my favorite shows). The storyline was based around the notion/truth that in a life threatening situation people see their life flash before their eyes. The main character is in the process of being shot when he finds himself in a sort of heaven or perhaps limbo state. Fortunately, heaven is a dinner, which allows him to see important people from his life. He spends much of the episode talking with his mentor, now deceased, who acts sort of like Clarence in “It’s a Wonderful Life” as Gibbs (the main character) is shown “what if” scenarios based on decisions he’s made in his life. Watching this got me thinking about how small choices we make create ripples throughout our lives, the effects of which we sometimes don’t know for many years if we ever do at all.

Then I ate a fortune cookie, which gave me this incredibly sage advice:

    “Win as if you were used to it, lose as if you enjoyed it for a change.”

Pieces began to click in my mind but I admit it wasn’t really enough to get me to write. Then I saw a Toyota Camry commercial followed by a Chevy Malibu commercial, which encouraged Camry drivers to give the Malibu a test drive and see if they weren’t convinced to switch. That’s ultimately what pushed me to write what follows.

First, I don’t know how many people read these posts or if anyone actually does. But, this post, perhaps more than any other I’m writing for you, the audience. And second, I don’t mean to sound presumptuous or claim that I’m perfect, a genius or even a self-help guru. But I do think that I have some things figured out that people can benefit from.

I’m not bragging or complaining, but I’ve had this friggin disease for almost half my life now and in addition to it I’ve seen my share of tragedies and hard times. My dad left when I was 10, I know that’s actually quite common nowadays but just because a lot of people experience it doesn’t mean that it’s gotten any easier to grow up that way. When I was in high school my house burned down. After 9 months of rebuilding we were a few weeks away from moving back in when my grandmother died unexpectedly. She served as primary caretaker after my father left while my mother worked a day job and went to school at night in order to get a career that could support us. Not surprisingly my grandmother deserves a large chunk of the credit for how I grew up and developed as a person. When the shock, pain, anger and depression of that faded away is when I got my first diagnosis of Crohn’s disease. Since then I’ve tried not to let it bring me down, and when it has, I’ve done whatever I could to get back up, as fast as I could. I drove across the country in 8 days, fighting through some of my most painful symptoms alone on the road. I worked through the pain in London refusing to let my partners down no matter how many times I had to excuse myself to the loo to throw up. There were other options - leaving most of my possessions in San Francisco and flying home, not going to London, telling my partners that they’d have to manage without me. All of the things that have happened were my choices. I chose to put myself in these positions and do these things. When the doctor’s exclaimed that they couldn’t believe that I was able to get out of bed and walk, let alone go to work and manage to live something quite nearly resembling a normal life given how bad the catscans showed my condition was, I knew that it didn’t have to be that way, I chose to do those things, for myself.

Today I left the house, I went out, in public, for an extended period of time. I’m still recovering, still have my share of issues going on. But today was the New York Giants Super Bowl victory parade. Something that doesn’t happen all the time. Something, like driving across the country, like moving to London that I’m going to remember to the very end. I wasn’t always comfortable standing around at the parade, in the back of my mind I was worried about some of the digestive issues I’m working through as part of my recovery. My surgery side felt sore and uncomfortable several times during the day, and walking back to the car from the subway I caught the lip of an uneven piece of concrete in the sidewalk and fell, although I managed to turn in the air so that I landed on my shoulder and elbow (I had my hands in my jacket pockets) knocking the wind out of me and leaving me even sorer on that side.

So how does this all tie in? Why would this guy claim that other people should listen to what he has to say? Very simply, because I’ve lived enough experiences both good and bad to realize this:

    In the end, you have to live for yourself.

You can drive a Camry, or only use a Mac and play it safe; the low or no risk choices. Maybe your symptoms aren’t completely under control, maybe you’re worried about which is the safer car or how could you possibly understand computers but if you want something different than you take the risk and do what it is you want. Yes, it’s sometimes easier said than done, especially when it comes to deal with Crohns but how many things do you want on your “Crohns Stopped Me from Doing” list? I was not going to let a Giants Super Bowl Championship Parade, through the Historic Canyon of Heroes fall on that list. I packed a small bag with items I would need in case of a medical mishap or emergency and I did my best to put worry out of my mind, instead I focused on the reason why I will remember February 7th, 2012 - The New York Giants won the Super Bowl and New York (including me) came out to celebrate them.

For us, Crohns is something that will always be there. While we’d all like that to not be the case we’ll only be doing ourselves a disservice to put things off until the day there’s a cure. There are plenty of other people in the world with similar conditions or just plain old fear causing them to take the path of least resistance even if it’s against what they want to do.

I had a dog tag necklace made a few years ago with the motto “Semper Mi” (a play off the Marine code Semper Fi(delus) which translates to ‘Always Faithful) meaning ‘Always Me’ because I won’t allow Crohns or any other condition scare me into not living my life the way I want to. When it’s all said and done, no one looks back and regrets that they took a chance. It may not turn out the way you want it, but even that is better than regretting that you missed out on your own life.

Crohn’s can’t stop me from living ‘My Way’

I’ve been out of the hospital now for about a week and a half. Recovery is going well, albeit a bit slowly. Still sore on my right side, still hurts when I cough or sneeze, and of course I still have a fairly large open wound on chest. But all of those things will heal in time. While that’s going on my digestive system is trying to get back *nsync with itself. My surgeon told me to add in a fiber supplement to help with that. Yay more pills, but once you’re taking 10+ pills a day you really stop caring about adding more.

Because of the multiple surgeries it’s basically in three distinct zones. The first one extends from my stomach to where my ileostomy was - that’s been running normally this whole time. Zone 2, is between the ileostomy and the colostomy and was running with zone 1 for all except the last three months. So now it’s trying to catch up. And finally there’s zone 3, from the colostomy to the end of the road and that’s been off-line for about 15 months. Naturally it has a lot of catching up to do.

Still, every day is a little bit better all around. Tonight, for the first time in my entire life, I ate an entire pint of roast pork lo mein. Seriously, I’ve been eating Chinese take-out probably since I was 5 years old and I have never been able to consume the entire order, Crohns symptoms or not. I take this as a positive sign of many things, not the least of that my body recognizes that it’s undersized from what it should be. I should update my weight soon since I’m obviously about to start making progress, but last I know it was at around 127 pounds. Looks like the quest for 152 is underway.

And here’s the payoff for that unnecessary *Nsync reference (damn those dolls look creepy):

http://www.youtube.com/watch?v=GQMlWwIXg3M&ob=av2e