On the cliffs of Torrey Pines, looking at the ocean…
Someday, I’m going to try the paragliding, too.

I haven’t written in a long time, mostly because I don’t want to bore you with more of the same… especially when the same is along the lines of yay! life! It is so rare that I have new insights about what it means to me to live with an ostomy pouch, or to live as if I no longer have Crohn’s colitis. Whenever I think of something to say, I remember that I’ve posted something like it before. But, in case you wonder A) whether anything has occurred to dim my view of the whole thing, and/or B) what I’m up to anyway, here are a few notes…

Still happy I did it. Nothing bad or dramatic has occurred with my ostomy, so I’m just living life as a healthy person, and that’s worth everything. I do have a friend that had to go in (was it two years after her initial surgery?) to have scar tissue removed, and that freaked me out a bit. It was really difficult for her to go through feeling sick, suddenly being in the hospital again, having another surgery and healing from that, and not knowing if this would be a regular occurrence in her life. It made me realize too that I’m never in the clear. Scar tissue, a hernia, or even full-on Crohn’s disease in other parts of my GI – but none of us are ever in the clear, so it doesn’t trip me up too much. I have another friend who was reconnected, and that did get me back to thinking about how awesome it would be if scientists and engineers figure out how to grow me a new colon – at least before I’m so old that handling this pouch becomes a real dexterity issue.

Another reason I haven’t been blogging is that it turns out that being a Ph.D. student is more than a full-time job. I typically put in 12-hour days during the week, and 3-5 hour days on the weekend. I’m loving it, and it’s never far from my mind that the only thing I could manage for 12 hours when I was sick was sleeping. I also attended a conference in D.C. last spring and then a workshop in Italy in June, and I’ll be going to Vienna in a week for another conference. I love that I can travel with ease, and that my new career involves (mostly) funded trips to various places in the world to meet with people who are interested in the same things I am. And it is lovely to feel that I have an identity again other than just being a sick person.

Other than that, I took surfing lessons this summer. I find that as long as I’m wearing a wetsuit, which presses my stoma against my skin, I don’t find any complications with laying on my tummy to paddle. I still can’t surf, but at least I know enough basics to practice. I also started taking tang soo do classes. I hadn’t done martial arts since moving to California, and whenever I don’t do martial arts for a while, I really miss it. While I prefer kung fu as a style, I always choose according to two criteria: 1) time/location/price that’s comfortable for me, and 2) a good teacher. I am having fun, and again, no major issues as far as the ostomy is concerned.

So that’s it. Still loving California. Still loving life.

Greetings, 2011. I begin a new year in my post-Crohn’s life. I am happy and grateful for the fullness of life free from disease. My ostomy is old news as I approach my three-year anniversary of surgery. I am aware of my ostomy, but I forget about it – like contacts in my eyes, or the watch on my wrist. I know that I am healthy because my days go quickly, full of purpose, activity and connection.

2010 was a fantastic year. I could never say that when I was sick. A whole year could never be fantastic – at best there were good days, weeks, maybe even a month.

By last January, I had applied to graduate school and could do nothing but wait to learn how it would pan out. In March, I was relieved to find out that I had been accepted to a couple of programs. After visiting the campus at the University of California-San Diego and meeting the people there, I was convinced that it was the right place for me. I was thrilled by the prospect of living near the beach in sunny southern California, and I was excited about the many amazing people I had met. I had a glimpse of what this new life would be, and to my relief, my husband was game to move (and had the luxury to do so, because his company agreed to let him work remotely).

Great good luck followed in terms of moving and living arrangements, and by the end of May we had loaded our 24 foot truck, drugged our two cats, and headed out west. The very first weekend following our arrival in San Diego, wonderful new friends from my graduate program invited my husband and I to join them at the beach to swim in the bioluminescent algae bloom that happened to be occurring. We found ourselves on a beach under a starry sky with food, beer, and wetsuits. Though I thought I might die (being somewhat afraid of the ocean), I put on the wetsuit and headed out into the expanse of black water. Each cresting wave sparkled white-blue, and when we moved our arms around us, trails of sparkling water followed. It was a cosmic feeling.

Thus began an adventurous summer of making new friends, camping in the mountains, swimming in the ocean, grilling and campfiring on the beach, and settling into our new home. We had picked up and moved to a new place so that I could pursue a new career. We never could have made such a commitment when I was sick. Even if I had been in remission for a year (and I was basically never in remission), I never knew when Crohn’s would rise up and take over my life. I couldn’t go back to school or make any such big commitments. We might have moved to a new state and I might have started school, only to have to drop out before the first quarter was even over. But as an ostomate, I was able to commit, and it has felt awesome.

School started in the fall, and it was crazy busy and stimulating and challenging and fun, and the whole time I was aware that my body was able to keep up. I could handle the stress. I could expend the energy necessary to do what I needed to do. The ten-week quarter flew by, and I aced my classes. Over Christmas break, we relaxed, walked the beaches, played Scrabble, and read books.

Tomorrow school will start again. I may not have time to blog again until spring break! But I’m all smiles. No regrets. Life is good.

This summer, I had the privilege of getting to know Gina Riggio. She has just turned thirty, and she’s also just had the first of what she expects to be three surgeries as she proceeds toward a J pouch. She is a singer, songwriter, and pianist, and one of the things that so impressed me about her was the way her music carried her through the emotional vicissitudes of illness and surgery. I was so moved by her latest song, “No Guarantee,” written just days before surgery, that I interviewed her and wrote an article about her for the December 2010 issue of The Phoenix magazine.

One of the things that is very special about this article is that it looks at surgery through the eyes of someone going through it. I interviewed Gina the day before she headed to the hospital, again in the days after surgery as she recovered in the hospital, and finally as she healed from surgery at home and returned to work. This is a story that is optimistic and hopeful – but it also gives up close, personal reflections of the hopes, fears, frustrations, and anxieties that a person feels as she makes this big change. Gina moved through it with bravery – and before long, not only had she returned to work, but she was back on stage, performing live! To hear her song No Guarantee, you can stream it from her website: Gina Riggo

Please check out the article and Gina’s new song! And good luck to Gina as she performs live this Friday 12/3 at 2 PM EST on her local college radio station (The Lion (Penn State) and as she gears up for her second surgery in January.

When I had ileostomy surgery for Crohn’s colitis, I was aware that I might develop “body issues” having to do with the presence of a stoma on my abdomen, along with a bag of shit attached to me. I didn’t know how it would look or feel or smell. I didn’t know how it would affect what clothes I wore, what activities I would do, or how I might interact with others. I knew that I had no alternative but to have the surgery, and that I would just have to face the challenges that would come as part of the deal of losing my colon in order to regain my health.

Now, two and a half years after surgery, I realize that for me, the so-called “body issues” I theorized as potentially arising from my ostomy have failed to materialize. By and large nobody but me can see or smell it (I only smell it when emptying or changing it). While it does affect my clothing choices to some extent, it is not an overly determining factor in how I dress. While I occasionally modify my behavior in ways that may intersect with my social interactions (e.g., I try to avoid taking a long walk after a meal – an activity that is appealing to many and which is therefore proposed sometimes after sharing a meal with friends), most people would never guess that I am physically any different from them (if I didn’t have such a big mouth that I invariably tell them all about it, they wouldn’t know).

Nevertheless, I have developed some body issues that are peripherally related to my history as a sick person who is now healthy. My weight was always changing when I was sick. From a low of around 95 pounds during complete bowel rest to a high of around 140 pounds when I was on Prednisone, my body was constantly in flux. I had clothes in my closet ranging from size 2 to size 10. I have stretch marks on my thighs from the rapid changes. But through all of that, I always thought of my normal, healthy weight as being 122-126. I assumed that after surgery “regaining my health” meant that I would be physically active and eat healthy, and that I would once again arrive at my healthy weight. When I shot up to 140 after surgery, I couldn’t figure it out. First, when I came out of the hospital twelve pounds heavier than I went in, I assumed it was just water retention from the surgery itself. But I never lost it. Then, as I began to do yoga, I thought maybe it was some combination of water, real weight gain, and increased muscle mass. Then, when I started kung fu, I thought it must be the muscle – but I could tell that there was actual fat on my thighs. As time went on, I felt flustered and upset. I felt so large. It is not that I think 140 pounds at 5’6” (a size 10) is inherently large, but rather that it feels large for me. I theorized that maybe it was my age – now well into my thirties, naturally I should weigh more than I did in my early twenties. Maybe that’s partially true, but let’s face it, there are plenty of people my age who are more trim. Then I thought that maybe it is because my body learned how to take advantage of every single calorie after years of malabsorption. But I know others who have been through the illness and the surgery and who are my age and height, and who did not experience the same weight gain. Then I decided that maybe it is just because I’m a pig.

Eventually I realized that I was obsessing about my body in a way that was not healthy. And now – drum roll, please – I am working on acceptance. After all, I’m a pretty healthy person – I run and do yoga and go hiking, so I’m definitely active. And I eat very well – while I am no longer a strict vegetarian, I have meat no more than once a month. I eat whole grains, beans, vegetables, eggs, etc., almost all organic and fresh. I do not eat many processed foods. I eat some dairy, but not a lot of it. (I have a new friend who is a fat activist, and I think she would probably critique my disclaimer that it is more okay to be curvy since I’m healthy, but the fact that I’m healthy really does make me feel better about my weight). So the realization that matters is this: this is who I am, this is how my body is, and that’s fine. I am beautiful and healthy, and right now that looks like a size 10. Maybe the problem had more to do with the clothes I was choosing to wear – clothes that might be flattering on a narrow size 4 body, but that were uncomfortable and unflattering on my new, curvy size 10 body. Maybe the problem had more to do with a fundamental lack of acceptance about the fact that I am not going to look the way I did before I got sick. I weigh more, and I have lines around my eyes and gray hairs sprouting all over the place. Just because surgery could give me back my health doesn’t mean it can give me back my twenties. It cannot return the youth that I lost.

So what!!!!! Have I already grown so used to health that I have the energy to waste on feeling bad about myself and complaining about stupid things????? No. I have lots of energy – that part is true – but none to waste on whining and self-loathing. I have wasted some, but I refuse to waste more. And, in fact, I went shopping and bought myself new clothes that are comfortable and feel good on this new body o’ mine.

I’m sure that everyone goes through their own transition. For some, maybe the stoma and the pouch cause more difficulty than they did for me. I can understand that. For others, maybe the location of their pouch has more impact on their clothes and/or their sense of style. For others, it may be a change in weight or something else. I think the common thing is that anyone going through this surgery experiences a significant change in their body, and that change can be difficult to get used to at first. I think the best thing we can do is revive the laughter and sense of humor that got us through our disease in the first place, and practice some loving-kindness toward ourselves. As I’ve said so many times before, health is the most beautiful thing in the world. And if I can be joyful too – well, that is the kind of beauty that feels like sunshine.

Yesterday marked the last day of my work as a software developer. I worked for a small consulting company for over nine years, ever since I graduated from college. I will always associate it with illness. I was hired in 2001, and by 2003, I was so sick I had to go on short-term disability, followed by long-term disability in 2004. After hospitalization and near-death illness, I resigned my position, but continued to work for the same company as a consultant, until yesterday. It was such a blessing when I was sick – it was the only thing I could do, it was a chance to make some money even though often I was so sick that I worked from bed, and hour here, two hours there. I could not have handled a job at a bookstore, but I could work on my computer from home and make good money when I was well enough to sit up and focus. I will always be grateful to my boss for being so flexible, and for giving me the opportunity to earn income. But it was not work that I enjoyed or that satisfied me in any deep way, so when I got better after ostomy surgery and realized that I could do anything I wanted, I began to dream again. In going back to school, I understand that I am leaving a very good job working from home with flexible hours making good money to spend the next six years as a student. And eventually, if I’m lucky, I’ll get a job making less money and that has less flexibility. But I feel compelled to live the rest of my life to the fullest, in accordance with my deepest desires, goals, and dreams. And so I move on.

Yesterday, when I logged out and shut my computer, I began to tremble. And then I cried. This new healthy life is real. And I am in it. Last night, I invited people to join me on the beach for a sunset swim followed by a campfire. I swam in the waves as the sun reached the horizon, and I wiped out on a big wave and felt sea water swirling all around. I warmed up by the campfire, sipped on a gin & tonic, and visited with my new friends as the stars came out. Before the evening was over, there was a huge shooting star that was so bright and slow-moving that everyone had a chance to see it as it traveled over the ocean, bright enough to reflect on the dark water. Could I know this joy if I had never experienced such pain?

Ever since ostomy surgery two and a half years ago, I’ve been a little worried that one day one of my cats would jump on me while I was sleeping, and land on my stoma, and it would be horrible in unfathomable ways. This morning my fear was realized. Nothing spectacular, pretty much exactly the scenario I worried about: I was asleep on my back, my cat jumped next to me to tell me I was oversleeping, then decided to walk/jump over me to inform my husband that he was also oversleeping, and BAM BOOM I got the full weight of my 13 pound cat on his hind leg directly on my stoma. AAAUUUUGGGGHHHHH! I screamed. And then… it was over. I clapped my hand on to my stoma, and felt it and covered it lovingly and moaned and groaned … and drifted back to sleep. And when I woke up later, everything felt normal again. I’m assuming if there had been any serious trauma or injury I would have felt something today, but everything was fine. So there it is – my cat landed on my stoma, and it hurt, and that’s the end of the story. Not the end of the world. Today I have faced this long-standing fear, and I won – but it was a bum way to wake up. And my cat? He got a treat anyway. My cat always wins.

I love to cook, eat, and entertain, and as an ostomate I can do that again. When I was sick, it was often difficult to do any one of those things, never mind all three. Cooking and entertaining took more energy than I had, and eating…well, anyone reading this post knows all about that.

Last night, I had a couple over for dinner, and I decided to make pizzas. I did groceries around 1 PM, then came home and drank a cup of coffee, and got started. First, I made braised garlic by cutting off the tops of four big heads of elephant garlic, placing them in a baking dish with vegetable broth, rosemary, and thyme, and putting it into the oven. Then I made the pizza dough, kneading kneading kneading, and set that aside. Following that, I made: chipotle paste, puttanesca sauce, chili lime toasted almonds and rose geranium dressing for the salad, garlic-herb aioli, grilled onions, sauteed portabella mushrooms, and sauteed sage-fennel quorn. I sliced fresh heirloom tomatoes, chopped and cleaned the butterball lettuce, shaved fresh corn off the cob, and then I was finally ready to roll out the dough for the ten-inch pizzas. By this time it was already 6 PM, and my guests had arrived. I poured myself a glass of wine, and moved right into the entertaining part of the evening. We enjoyed all of the pizzas: garlic-herb aioli, figs, grilled onions, and goat cheese; garlic-herb aioli, portabellas, and blue cheese; puttanesca sauce, sage-fennel quorn, and fresh mozzarella; and chipotle paste, heirloom tomatoes, corn, and smoked cheddar (all came from the Millennium Cookbook, not including the cheese). We visited, and eventually moved on to dessert over a long game of canasta. I didn’t go to bed until after midnight.

I could enjoy such a day because I am healthy, and I especially appreciate such a day because I know what it’s like to be sick and to no longer be able to cook, eat, and entertain.

As a side note, I know that when you’re considering ostomy surgery, you imagine having various dietary restrictions. While each individual is different and may have certain limitations, I have experienced relatively few. Nothing that I ate or drank yesterday – not the corn on the pizza, the spicy chipotle paste, the red wine, the almonds, the salad, or the cheesecake – adversely affected me at all. Had I still been sick with Crohn’s, any one of those things might have sent me to the bathroom for the rest of the evening. This is my new life. Cheers.

I often write about all the things I can do now that I have an ostomy – so many things that I couldn’t do when I was sick. But sometimes, pictures can do more than words. Here are a few pics from my last two months in San Diego:

An early morning bird-watching walk with my dad on the beach. After the walk: coffee.

On the Fourth of July we hiked down the cliff to the beach and cooked out and made margaritas…. and when it was too dark to see, I emptied my pouch into a ziploc, double-bagged it, and packed it out. Gross if you think about it, but really, no problem.

Going body surfing in the ocean – there’s nothing like it! I’m careful when I jump on that board and let the wave ride me in because I don’t want to impact my stoma too hard, but so far I’ve had no trouble. I usually wear waterproof tape around the flange when I’m in salt water. I might not need it, but I feel more confident with it.

We hiked from 6,000 ft up to 8,000 ft and enjoyed lunch on top. Some Immodium helped to make this a comfortable hike.

To be up early in the morning and running on a beach like this is something I couldn’t imagine doing when I was sick. I never thought surgery would allow this kind of experience back into my life.

… not to mention the energy and the strength it takes to jog up the cliff. This is what health looks like.

When I first got my ileostomy, my ostomy nurse told me that I should carry a set of emergency supplies with me at all times. My “ostomy welcome kit” came with a little black bag which I could use for this purpose. I remember taking that thing with me wherever I went, even if it was for a walk around the block. I didn’t know when I might have an emergency, but I felt that it was an imminent threat at all times. And what did an emergency look like anyway? I worried that my ostomy might just explode off of me at any moment.

I remember experiencing fear, uncertainty, and alienation in the early days of my ostomy. I left my house with trepidation, and felt my pouch every few minutes to see if it was still secured and not leaking. At night, I slept on my back with my hand on my pouch, and I had nightmares of exploding ostomies, missing supplies, and reptilian stomas. I prepared a second, more robust emergency supply bag for the car. I chewed my food slowly, and carefully monitored every change in sensation from my output.

Now it has been two and a half years since my surgery, and … I still carry my emergency bag in my purse, and one in the car, and … no, that’s it, actually. I can’t really claim to chew my food slowly because I really do wolf it down. Rather than trepidation, I leave my house with confidence. I do not expect an emergency, and if I have one, I am prepared. But in the two and a half years since surgery, I have only had one instance when I had to unexpectedly reattach my pouch in a public bathroom, and that was very early on, when I was still learning how to do everything. Since then, I’ve had a few close calls – like times when it was a race to the bathroom after my output turned to water and filled very quickly, or when I did have a leak in the night and had to get up and change my pouch. But I’ve not experienced any exploding pouches or other catastrophic events.

In fact, I’ve grown so confident that recently I’ve forgotten to take my emergency pack with me. Last week, I lost it! I don’t know where I could possibly have mislaid it, but for a week I went without any emergency supplies on me at all. I had nothing in my bag, and several months ago the one I kept in the car came out for some reason and never got put back in. So, essentially if something had happened, it would not have been pretty. Eventually I got it together and created a new emergency pack for me and I don’t know why it took me so long to do this, but I put my supplies in a pretty makeup bag this time. Why in the world did I keep that ugly cheap black thing they gave me at the hospital for two years? I’m glad I lost it, because it was time I put my supplies in a pretty bag anyway.

If you’re new to surgery, and you’re totally freaked out, I hope this post gives you some hope that before long the anxiety will recede. I still check in on my pouch once in a while, but I would describe my relationship to my ostomy now as an ambient awareness. I rarely entirely forget that it is there, but it is certainly not the foremost thing on my mind. Whether I’m out birdwatching early in the morning, or floating on my body board in the ocean and watching the setting sun, my ostomy is taking up just a pinch of space in my mind.