Whoops, Where'd my Colon Go?

On March 21, 2012 had a surgery known as an ileostomy as a result of years battling Crohn's disease. I have decided to chronicle my experience before and after the operation here.

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2-Day BBQ: Before

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Resources Update

It's been a while since I added to the resources page (which you can find over to the left). Here I've added some ostomy-specific resources mostly in blog form. There is the United Ostomy Association of America (UOAA), as well but these are more lifestyle/dealing with/stuff you might not find with a quick google search.

Girls With Guts - A fantastic resource for girls and women on the realities of living with gut-borne diseases. They really get into the grit of what it's like to live with IBD, the stigma that it can load onto your shoulders and how to hopefully break through it and realize that dealing with this disease doesn't make you any less of a lady.

Ostomy Outdoors -- I have quickly become a fan of this lady's blog. An active woman with a love for the outdoors before her surgery, she is determined to continue her life as awesomely as before. She's incredibly open about her experiences - the good and the bad, and absolutely someone who I admire for her kick ass tenacity. She also has contact many appliance producers to test out ostomy gear, which makes it easier for someone like me to gauge what would work best without purchasing or trying them all out myself.

Girly-Girl's Ileostomy Blog -- You want attitude? I give you a whole lot of attitude. Another lady blogger I can get behind, she pulls no punches when discussing the highs and lows of life as an ostomite. Incredibly candid, reading this material before I went into surgery was an enormous help. And trite as it is, it made me feel like I was not alone. Girly-Girl is open on sensitive topics that ostomy nurses can shy from (especially since they're used to dealing with ostomites who are married and in their 60s and aren't as concerned with sex and having an active night life as young people who could be considerably more stigmatized by the idea of life post-surgery).

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Great to have someone putting additional exposure on the disease. As more people get diagnosed (and it's happening at a faster rate than ever) people like Light are fundamental to breaking light on Crohn's and expanding the possibilities of treatment.

[aguywithcrohns]

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Day after my birthday, Fuck Yeah.

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Life's a banquet and most poor suckers are starving to death!

Auntie Mame

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Your surgeon took your colon, now what?

This is a scary ass operation you're going through. I'm not here to say it's not. Your life is going to change drastically - hopefully for the better compared to where you were at a few months back. But the truth is you're not going to realize that for a while. You're going to feel stigmatized, possibly in shock, and with a penetrating realization that there is no going back now. But you also probably have a morphine drip to click to your hearts content every seven or so minutes. Sweet, sweet morphine. And no joke you're going to need it after that operation. Here are a few things that'll most likely follow immediately after surgery.

You're exhausted. Yes, you were just out for four-plus hours thanks to the annestician's nap inducing skills but your body just went through a huge operation. I really suggest having made a calming playlist in advance and if you couldn't listen to it while in surgery, then see if you can get someone to plug in your earphones in recovery. They say classical is the most calming, and I'm not knocking that but if jazz is your thing, do jazz; if you like rap, you can find the instrumental tracks pretty easily; and for everyone else there's Explosions In The Sky. The key is non-verbal, according to many people who specialize in this kind of thing. Although there is also a huge market of spoken word calming tracks developed specifically for pre-during-and-post op that you can find online or on Spotify (which I found incredibly useful for this purpose.) I'll add some helpful links to the resource page (which is in dire need of an update anyway) soon.

Pain. You will be in pain. You won't know it thanks to your friend the morphine drip. Keep this where you can easily reach it at all times. It's bound to fall off to the side of your bed or something at some point but don't panic. Just call the nurse and she'll get it for you. But seriously, that little fucker is your friend. Now this operation means you finally FINALLY get to eat like a normal human being again. But it's going to take a bit. You'll still be on clear liquids the first day or two until your surgeon thinks your ready. And then... Soft foods. Which really means anything that isn't a hard fruit. A good place to start is oatmeal and mashed potatoes. Also if you dont do well with starch and don't want to test yourself too much jus yet, stewed apples or bananas mashed with cinnamon are really good alternatives. The key is porridge-like consistency. From there you can slowly move on to more adventurous fare depending how comfortable you are. Your body is still out of it from the surgery so your appetite isn't going to be huge but that's a good thing. And remember, this isn't a race, you (best of best cases) have your whole life to eat foods you gave up on long ago.

Seeing your situation for the first time is not going to be fun. You may very well freak out, have a breakdown, not wish this fate on your worst enemy. These are all normal responses. Totally and absolutely normal. And it looks a mess at the operation site. While some patients have the option of more discreet surgeries where an invasive incision doesn't have to be made, I have a nice scar running down from below my navel to my pelvis. And when I first saw it there were staples (which help hold the stitches together as your skin heals) making that otherwise straight, very neat line look all jenky. It was gnarly. There is no other word to describe it. You've also been suited up with a transparent pouch where you find a small bud at your lower abdomen. Your stoma. The end of your small intestine that now pokes out of your abdominal wall. This is very fucking strange. This might bring you to tears. And that's alright, seriously it is. If you were comforted by this new accessory to your outward appearance you are either ridiculously optimistic or very very scary. Some people find that naming their stoma helps. I come from a family that names everything, we have a very strange capacity for bringing inanimate objects to life. However besides 'bud', which is really a term surgeons also use to describe stoked because that's what they look like - little shiny unopened flower buds, I have not found this to work for me. Maybe it does for you, maybe it doesn't. Try it out and see if it helps you cope. I saw one person give his stoma the name "Stommie P.I." that stoma obviously had a backstory and everything going for it. I mean, that bit of small intestine is probably freaked the fuck out, too. It's used to the warmth of your insides and now is out there in the cold, cruel world with your epidermis. Be kind.

And remember that crying can cause pain. As can laughing. And coughing. And especially hiccups - which is the worst because apparently hiccups are quite common post abdominal surgery. Why do all these things bring jagged knife like stabbing pain that leaves you scared for the next round? Your diaphragm is behind your abdominal wall, when that jerks your abs do too, they clench and release. Your abdominal muscles are sore as all get up, and will be for a while. When you get around to having to go to the bathroom to pee you'll go through a few more days of extra pain - which again is absolutely normal (not that I knew so I was under the impression something had gone wrong in my surgery that affected my bladder). It's a pain that comes from the right side of your body. You'll know when you feel it. And it's because apparently you use your abdominals when you pee. Who knew. Now you do. It's going to take a few more weeks for this to fade out but it will.

The first time experiencing your stoma at work, bag changes, all that are a whole other story that I'll post about soon. If I think of more "what to expect" tips I'll be sure to tack them on. If you're heading into surgery, good luck and I hope this has been helpful. If you have any questions feel free to contact me or post here.

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Might Start Using The Damn Twitter

So Ive had a twitter account laying around for a while without bothering to use it. I figure now's as good a time as any - a little late to the party, but what the hell. I'm feeling like a narcissism bump. You can find me over @JeSuisDavissa

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Gaultier Exhibit at The DeYoung Museum

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The other day I took a walk - that turned into a jog - up to the Legion of Honor, about 1.5 miles away from my house. I have to say it's great to have places like these that really make you want to get out of bed and go do something so close by. The Legion was dedicated by the Speckles family in 1924, in honor of those who died fighting in WWI, "for the young of our land who fought to make men free."

It's something else to have such easy access to something as amazing as a cast of Rodin's famous Thinker in the middle of your neighborhood. The rest of the museum is amazing, but I love the outside landscape the most. It takes you to a different place - away from the golf course that takes up the expanse of land surrounding the legion.

As I walked up to the museum - and it is mostly an up hill battle - I thought about how just a month ago doing something like this would be impossible without taking a break or feeling the need to race back home, to take a seat or pop a preemptive vicodin in the case that my gut started to hurt. This walk, I felt good enough to jog a little - in flip flops. It wasn't like a long stretch, but it was enough to register how amazing life was without those stings and plan b's and preemptive precautions.

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A good reminder for us all.

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Carpe That Fucking Diem

This Friday it will have been a month since my operation.

I know I haven't been fantastic at keeping up to date on here since the surgery but it's because I've been... busy. Busy being busy. Busy going out. Busy seeing friends. Busy celebrating. Busy feeling good. Busy doing things I hadn't done in a long time and thought I might not do again. Being busy has been awesome.

I hardly expected life to jump start so quickly after surgery. I went in expecting set backs and pain, readying myself for a hard journey and a difficult transition into this new normal. In a meeting with my surgeon days before the operation he told me that he didn't expect many complications to arise during the surgery because I was so adaptable - it was one of the best compliments I think I'd ever received. I took it to heart, knowing how much I would have to adapt to this new... everything. Now a month later, with almost 31 full days of this under my belt I can say that if I had to wear one of those dumb t-shirts with an adjective to describe me I would wear the word "adaptable" with beaming pride.

I do not want to spread the false impression that living with an ileostomy doesn't come with its share of hardships. I'm not very religious - at all - but I'd be lying if I said I didn't feel blessed that my post-op experience has gone so smoothly. I am so thankful to everyone who kept me in their thoughts and prayers over the course of the last few months, who helped me get through the worst and whom I am so very happy to celebrate with now. It sounds so contrite, so unlike me but seriously without them I would not have made it out with the surprising strength and confidence that I now have.

And that's the funny thing, not that I was lacking confidence before the operation but I've come out of this with added self-esteem. Before the operation I readied myself to take an emotional hit - I sought out therapy with professionals who had dealt with ostomy patients in the past, something I highly recommend to anyone facing life-changing surgery. I was able to talk openly about my fears, from body image to testimonials from other ostomy patients who didn't feel the operation had improved their quality of life. I was able to voice concerns about things that might have seemed shallow to health professionals but were very important to me. A lot of surgeons aren't in the position to discuss how this will change your style choices, they'll usually reaffirm that this is a life saving surgery and fashion can take a back seat to life. They have a point. The thing is, you're the one who's going to be living with this the rest of your life, not them. And that's why I think it is incredibly valuable to have someone who will listen and discuss your hesitations, concerns, hopes, and goals beyond the all important bottom line.

Of course there's the baseline weirdness of it all - having a little bud at your lower abdomen that poops. Yeah, that's the gist of my digestive life now in blunt terms. It sounds gross, and at first it is gross; it's just so fucking odd, so fucking unnatural. But thank god our bodies come with this Plan-B for digestion because if this wasn't possible I probably wouldn't be writing this right now and you'd all be fucking sad about it. You wear a bag-like appliance over said bud (the stoma) that catches your waste, and which you empty out a few times a day -about 3 times for me right now. Now, as my incredibly awesome friend Nicole pointed out to me one day after the surgery when I was blubbering about how awful this was all going to be - I don't have to sit on public restroom toilets anymore. I believe I'll take "awesome things about ostomies" for $1,000, Alec.

I'll go more into how the ostomy and appliances work in another post. I'm sure you're all dying to hear about it. But really I don't think you get the whole picture or believe how simple it is until you have to deal with it yourself. I know I didn't, despite how many blogs I read about ostomites personal experiences. And of course it is incredibly overwhelming at first, it is exhausting to think about living like this for the rest of your life but after a week you come to terms with it and you face it head on and you realize... it's not the worst. And it's a lot better than life was just a few weeks ago. That's not a guarantee, but it's how things worked out for me.

Tonight I'm going see the Giants take on the Phillies. It's my first baseball game in over a year - I wasn't able to attend even one game last season but I plan to get to as many as possible this time (I'll take any tickets any of my lovely readers have to offer!) Two weeks ago I was able to celebrate easter with family and friends, I actually was able to wear my normal clothes without any problems, go to mass, enjoy a lovely cocktail at the Elite Cafe and gorge myself with things I was pretty sure I'd never be able to eat again without dealing with immense amount of pain before this surgery. In the time between I've gotten together with friends, I got to see the amazing, incredible, beyond beyond Jean Paul Gaultier exhibit at the DeYoung - I implore everyone to see this astonishing show, it is just awesome, I even went for a jog without issue. As of right now I have my life back, I'm happy to report. I would have never imagined I would have been able to do so much just a month after surgery but I have - and if this is any indication I'll be able to do things well beyond what I thought I would in the months ahead.

UPDATE: THE GIANTS WON! 1-0. One of the best games I've ever been to. Incredible.

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Bald Barbie Comforts Kids with Cancer:

Mattel, the makers of Barbie, announced last month that a hairless “friend of Barbie“ will “be distributed exclusively to children’s hospitals and other hospitals treating children with cancer throughout the U.S. and Canada, directly reaching girls who are most affected by hair loss.” The decision came after a Facebook group called “Beautiful and Bald Barbie! Let’s see if we can get it made” scored thousands of “likes”within hours of its creation.

Read more on GOOD.is

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Now, I've never personally dealt with cancer and despite all the Barbies I got over the course of many Christmases and birthdays I never was a fan, but this is a fantastic idea. Congratulations to the team who created the facebook group for their accomplishment and hopefully this can be a bright spot in a very rough time for these kids.

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Post-Op Summary Part I

It's been a while since I updated here, but I hope my photo-posts have given you an idea of how things have gone. Here, I'll have a go at giving a summary of how things went from the surgery (2 weeks ago yesterday) until now.

My final words to my surgeon: "Don't fuck up." The anesthesiologist and I had a laugh at that, and I really feel it helped me relax knowing that my surgeon had my threat hanging over his head. That and that they let me listen to music via my earphones throughout the surgery. I had been told by a few therapists who specialize in surgery-shock that it would be very helpful to have my own music playing during the operation. When I brought it up to my surgeon, he seemed okay with it but said he'd probably change the music back to something more to his taste once I was good and knocked out. This wasn't going to work for me, so we came to a compromise - he could listen to his music, and I could listen to mine. Considering how well the surgery went, I think this was just about brilliant.

So, what did I have on my playlist? Well, part of it I'd been working on for a bit, and part I haphazardly added on just minutes before the surgery (did I mention how awesome Spotify was for this purpose? Because it was. I have fallen in like with Spotify.) Mostly my playlist consisted of Jazz standards like John Coltrane, Miles Davis, Dave Brubeck, Chet Baker, Lalo Schifrin, some Elmer Bernstein - I was told this music-calming effect worked best with instrumental music. I put in a little RJD2, Hans Zimmer from Inception along with other classic tv/movie hits: the intro to Dexter, Six Feet Under, Cheers (which has a special place in my heart as some of you know), Taxi, The Simpsons, Charade, The Muppet Show, Bewitched, The Jetsons, TopCat, The Godfather, Murder She Wrote (because, why not?) and put in some Postal Service and Explosions in the Sky because why not dream a little dream of Tim Riggins while I'm having surgery. As anyone who knows me or my family can tell you we're crazy for musical theater; it's in our blood - you can try to deny deny deny all you like, but when some random trivia bit about Little Shop of Horrors or who produced the epic flop of Breakfast At Tiffany's - The Musical or what musical does the "Walla-walla-bulla" come from, or did Richard Kiley do No Strings or Man of La Mancha first? It will wound your pride to sit by the sidelines knowing full well you had the answer within two seconds. So there was plenty of that on there, too. Nothing like "Rose's Turn" playing in your head as that first incision is made.

So that's my knowledge of the surgery. I might ask my surgeon for a detailed summary of what was going on from his end, and if Sternberg regales me with that delightful tale you all will be the first to know it. When I woke up in recovery everything was still in a lovely haze, and if they ever pulled off my earphones I didn't know it, they were snug in my ears playing a song from the new Jason Segal-approved Muppets movie. "Life's A Happy Song", anyone?

The team at CPMC (California Pacific Medical Center - Pacific Campus), in my experience, is second to none. The doctors, nurses, social workers, even the custodial personnel is dedicated to making the best out of whatever lousy situation brought you to the hospital. My favorite team is in the ICU - where I spent an unfortunate overextended period a couple of months ago, and I'll get into THAT story some other time; but, 4th Floor - North comes at a close second.

I was very fortunate to have a room to myself - the hospital seemed to be close to a full house when I was brought to the 4th. My mom was able to walk with me out of the recovery room to my new room, and at first there was a bit of confusion about which of the remaining single rooms I was to have. There was one about the size of a tight walk in closet, and another with plenty of space that was on an angle. Note: If you're ever on the 4th floor at CPMC, try for room 470 - probably one of the biggest in the hospital besides the 5th Floor. Alas, 470 was not available this time but my room was pretty awesome, and honestly I liked having it a bit smaller than that palatial-sized suite. This room had enough space for my hospital bed (duh) and a really comfortable recliner that my mom used as a makeshift bed a few of the nights she stayed over. I don't know what I'd do without my Mama, just saying. She's literally been my rock in all this - cliché, but true. 

The first night I was asked to get up and try to walk. What's that you say, I just got out of surgery at 2 in the afternoon? What is this crazy nurse talking about, walking? She must be speaking to the wrong patient. But no, my doctor, masochist that he is, felt I should kill myself getting up and padding around my room for a bit. It took me about forty minutes to finally get to a sitting up position. That's what happens when your abdomen has been cut into, your large intestine cut out and your small one re-wired so it pops out like a little bud at your lower left abdominal. Not to mention the putting-thing-back-together and no matter how neatly they sewed your abs back up and stapled them just to make sure - yeah, staples in your belly HURT like a bitch, not gonna lie to anyone here - they keep tight. All this, and they want you to GET UP AND WALK? The only thing that got me through this process - besides the drug clicker, sweet sweet nectar - were my very loud death threats to the Nurse. She seemed to take them well. I don't think this is anything new for these ladies.

So up I was, and I shuffled around my room with my hospital-socks, bracing my mom's arm for dear life. Once I was actually up and vertical it wasn't so bad - still incredibly sore but no more intense stabbing pains like when I tried every which way to gt out of bed. I liked standing up, if only because I (correctly) feared what getting back into bed was going to be like.

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Hunger Games, Mad Men, Jambon Buerre. Life's looking on the up and up.

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The best mashed potatoes in the world, as made by my Mama. Tully (the tulip bear) investigates.

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Don&Toni's tulips make friends with Edwards daffodils. I'm collecting quite the green house, here