Before I had ileostomy surgery, I met with an ostomy nurse, and she told me, “This is totally manageable. You will have bad days, there’s no question about that. But everyone I have worked with has been very happy about their decision to have surgery. Most days will be good days.” Based on my experience over the last twenty months since I had surgery, I would say that this statement is a fair one.

I mostly write about how wonderful life has been since surgery, and it takes little effort to do that. This is how I feel most of the time, and knowing that there is so much fear out there around having surgery, I think it is important to communicate that. I was recently reading my new issue of The Phoenix magazine, the quarterly magazine put out by the United Ostomy Association of America (see link on my blog), and it occurred to me that it too is primarily filled with a combination of inspiring, positive stories, and technical information. The technical information is generally in the form of Ask The Nurse sections and articles about things like how to handle skin infections. I flipped through the magazine, and I realized that what I’d really like to see is a Rant section. Maybe just one page – I wouldn’t want there to be so much ranting that we inadvertently communicate that surgery is the most terrible thing that can happen to you, because I really believe it is just about the best thing that has happened to me since I got sick – but a little place where I could read humorous accounts of other people’s bad days would actually make me laugh and feel better. Because some days are challenging.

A lot of ostomates don’t personally know other ostomates, and some percentage of us keep the whole thing a secret from just about everybody in our lives. I am obviously not one of those people, but I respect that decision. So when you’re having a bad day because
-you woke up at 3 AM with a pile of poo on your tummy
-you’re having an inexplicable spate of leakages and you’re having to change your pouch every single day
-you were at the public restroom at fill-in-the-blank and somehow you pulled off your whole pouch when you went to the bathroom
-your stoma made the most obnoxious sound ever when you were having sex
-you got diarrhea and you accidentally sprayed the whole bathroom wall
-you’ve managed to get poo on your hands several times in the same day when emptying your pouch
-[your bad day story here]

wouldn’t it be fun to go somewhere and read other people’s rants?

Fortunately for me, my best friend is an ostomate, so when I need to rant I can call her up. And she, likewise, can call me up. Every ostomate should have an ostomate friend. But whether you have an ostomate friend or not, I think it would be be nice to have a place where we could all share our rants and feel a little camaraderie around the fact that we all share this peculiar situation that frankly some days is gross, inconvenient, and frustrating.

Everyone defines success differently, but broadly speaking, I would say that it is meeting your goals. When I was sick with Crohn’s colitis, I almost never met my goals. Sometimes my goals were relatively big, like working a full day or writing a couple thousand words on my novel. Other times, they were small, like emptying the dishwasher, or taking a shower and getting dressed. The scale from small to big was a sick person’s scale. My big, challenging goals were things I could have easily accomplished as a healthy person. But even so, I never quite made it. And one day I stopped making goals. I would wake up, and it might be nine, ten, even noon already. I’d shuffle around my home, maybe do a few dishes or straighten up a little before I was tired again. I would read a little, then become disengaged. Somehow evening would arrive, and my husband would come home and I was still in my pajamas. It sounds like the life of a depressed person, but I felt relatively cheerful most of the time. I had just forgotten what normal was, so I had no perspective on how bad things had gotten. And since I’d stopped making goals, I didn’t feel like I was failing day after day.

As an ostomate, I am a healthy person, and for the first time in years I can make goals and reach them. At first, I was afraid to set goals for myself. I started small. I was going to work six hours a day for a while, and see if I could do it. I was going to write a little every day, and see if I managed that. I would try to keep the house clean and make dinner and shower and get dressed and brush my teeth. But before long, I found that all of this was easy! So I decided to work eight hours a day. Eventually I started this blog. I decided that I wanted to go to graduate school, and for this I would have to take my GREs. I decided I wanted to travel again. I wanted to take up piano lessons. And I wanted to try to get my first published credit.

The higher I set the goal, the more nervous I get. The anxiety is not a central part of my character; rather, it is a learned response from the cycle of failure I experienced as a sick person. I have a rational layer that informs me that success is in trying, rejection is part of the process, that nobody experiences unqualified success with every single goal they set. And then there’s an emotional layer underneath, that results in trembling as I send a query letter off to a magazine, or telling myself that I shouldn’t try to pursue a PhD program after all.

I finally took my GREs, and I aced them. As I sat there in front of the computer looking at my score, I couldn’t believe what I was seeing. I kept blinking and reading every single word on the screen. Why is it showing these numbers? Is it really saying that these numbers are my score? I was shaking. As I walked out of the test center into the beautiful Colorado sunshine, I started crying. Why didn’t I believe in myself? Sometimes it feels like I recovered from Crohn’s disease over night, but fully recovering from chronic illness actually takes a long time. I have to learn to believe in myself again.

And then I received a positive response to my query letter, and again I was stunned. The phenomenon of reaching a goal is still so new. In my head, I keep hearing myself saying “Really?” As my life opens up before me, and I begin to realize that I might actually achieve what I set out to do, there’s a new kind of fear. You mean if I apply to a graduate program in Ithaca, NY, I might actually get in? What then? We would have to make a decision about whether to uproot our lives and move someplace with really cold wet winters, or stay here and forego that opportunity. What if my piano teacher, who is in the movie industry, reads my screenplay and he actually likes it and passes it on to a studio and they too are interested? What if my first published credit leads to my second leads to my third, and some day I can quit my job as a software developer and just consider myself a writer?

Don’t get me wrong, I want all of these things to happen. I want every opportunity to come my way. But perhaps more importantly, I want the internal strength to be able to shrug off the rejections as they come and keep moving forward. I guess right now I am just somewhat dazed as I try to come to terms with the possibility of success. Even though it’s been nineteen months since surgery, I’m still getting used to allowing myself to hope and dream. I’m still getting used to making goals, and only finally getting a glimmer of how thrilling it is to reach one.

I invited a friend over to dinner today, and at first she hesitated to accept. She explained to me that she was on an alkaline diet right now to combat some acid reflux. And boy, was she tired of eating millet. Ah, millet. This brought back memories. Over my eleven years with Crohn’s disease, I went on my share of alkaline diets, and I’ve eaten a lot of millet. I actually love millet, but nevertheless have probably only eaten it a couple of times in the year and a half since surgery. But this was no reason not to come to my house for a meal! If anyone should be able to pull off an alkaline meal, it’s me. So I urged her and her husband to come anyway. I just warned her tongue-in-cheek that if the meal was bland, we would blame her.

So I poured over my cookbooks, picking up a few heavily-used ones that I hadn’t looked at since my sick days. First, The Cleanse Cookbook, by Christine Dreher. This one, with the acid-forming and alkaline-forming lists that I had once photocopied so that I could have the lists taped up on the refrigerator and folded in my wallet. This one, with the recipes that would be really good if only you added a little of this and a little of that. Then I opened my Paul Pitchford’s Healing With Whole Foods. This book had really been through it. The pages are curled, dog-eared and food-bespattered. I went to the index, and shuddered as I recalled how I’d poured over the index so many times, desperate to find the information that was going to cure me. The book is great for understanding the properties of individual foods and for good, wholesome recipes, but try using the information there to form a Chinese understanding of the cause of your disease. Given all of the symptoms I had, there were all kinds of explanations, many of them directly contradicting each other. I used to go in circles in this book, at my wit’s end, trying to find some new insight. Maybe if I eliminated this, or added that, I would get my Crohn’s under control.

It was strange to dip back into this world. Just looking through these pages brought me back to a very dark time, a time when I still had enough hope that I was searching for a way that I could control my disease, but becoming aware that nothing I did seemed to make any difference. There were days when I found some tidbit that inspired optimism, days when invariably I had to run to Whole Foods right away to get this or that thing that was going to make a big difference. Then nothing. It’s a cycle that often led to despair.

But that’s not where I’m at anymore. Cooking an alkaline meal now would be an opportunity to create something pleasing for my friend; my own life didn’t hang in the balance. And another big difference is that as a healthy person, I have the energy to be creative in the kitchen. Having refreshed my mind on what is acid versus alkaline-forming, I could go to some of my fun cookbooks and with a few creative substitutions I could create a meal that would delight us all and relieve my dear friend from the monotony of millet.

The proposed menu:

Toasted buckwheat and tempeh stuffed cabbage with roasted red pepper sauce and a basil garlic cashew sour cream (the latter sauce is for the rest of us; cashews are acid-forming)
Bitter greens, figs, and butternut squash with a curried almond dressing (dressing on the side in case my friend can’t have it)

I’m a year and a half out from surgery, and 99% of the time I’m feeling happy, positive, and forward-looking. And then every once in a while something triggers an enraged look backward. Crohn’s disease occupied my body for eleven years, and dominated my life for at least half of that. I feel angry about that. Sometimes I realize that I am not done grieving. My bucket of joy has an oil slag of sorrow at the bottom.

The most recent trigger was the refusal of my old undergrad advisor to update her letter of recommendation for me so that I could use it to apply to grad school. I wrote a letter, which I sent to the advisor and two former professors, all of whom had previously written me letters of recommendation, and I laid out my story succinctly but, I thought, effectively, in my bid to make them understand why it was that I needed to go back to them after all these years. I reminded them that they’d previously written letters which I could have sent to them for their reference, and I reminded them of my accomplishments as an undergrad. I then explained my illness, and how only since surgery had I been able to embrace life again. I told them of some of the things I’m doing now, and my desire to return to graduate school and pursue a career. I made it pretty clear that I’d had little opportunity to form relationships that would serve as more recent witness to my ability to do graduate school, therefore I would greatly appreciate it if they could update their letters for me. My two professors were touched by my story and would be glad to provide new letters. My undergrad advisor explained that she could not attest to my academic creativity or my ability to do independent research.

I read and reread her note, and suddenly I was crying. I felt so upset, not specifically because she had refused to write me a letter, but because I didn’t have anyone else to go to. The self-pity filled my heart and my room and my world. I don’t have a single person who can write me a letter because I spent much of my adult life in bed and on the toilet. Bravo.

After swearing and stomping and playing a particularly melodramatic rendition of Moonlight Sonata on the piano and then banging the keys, I had a chat with my best friend and fellow ostomate. She said she too has experienced these moments of anger, most recently when connecting to an old friend through facebook, and finding that when it was her turn to do the exciting update about what she’s been doing since college, she didn’t have much to say. “I was sick,” details not really necessary. I have also had that experience when connecting to old friends. “I’m kind of just resurfacing after a long period of illness.” This is the only kind of response we can come up with after hearing about the amazing careers, and travels, and books published, and yada yada that our fellow classmates have been experiencing during those stupendous years of their twenties.

While grieving may be a necessary part of the process, it also feels fairly pointless. I already lost too many days to Crohn’s; the last thing I want to do is to lose a day moping around feeling sorry for myself. Although that is what I did. All day after receiving that note from my advisor, I felt sullen and worthless. “Maybe I shouldn’t even go to grad school,’ I said to my mom, who tried to calm my crazy. ”It’s not like you have to go to grad school to be a writer. If I had any self-esteem at all I would just write.“ She reminded me that I am writing, which only served to remind me that I’ve never published anything.

It takes a little determination to recognize where you’ve allowed yourself to go and to pull yourself back up. It’s okay to dip down to the bottom of the bucket and to remind yourself that the anger is there. If it’s there, then I want to know that it’s there and not be ignorant of what I’m feeling, because surely if there’s anger and sorrow at the bottom of the bucket, it’s informing some of my actions, words, and choices. But I’d rather leverage it to fuel my drive to move forward and accomplish something with the life that I have left to live. If I just stew on what I’ve missed, I’m not getting anywhere. And I know that if I get to eleven years after surgery, and I’ve done nothing that I’m proud of, I will have nothing and no one to blame but myself.

I’ve been thinking for some time now that any day was going to be the day that I switched from a daily blog to a weekly blog. Since I started writing Life With A Pouch in March of 2009, with the exception of a few days when I was in China and Tibet, I have posted six days a week, Sunday through Friday. The daily writing practice has been amazing for me. More often than not, the moment I sit down I have no idea what I’m going to write about. I just give my mind some parameters – crohns, ostomy, health, illness, etc. – and let it dance around until I have something. I don’t wait for the best thing – as is probably evident from some of my posts – I figure, if I’m going to write every day then I just basically need to go with the first thing that I think of.

This process has allowed me to dig deeper than I thought I could go, while at the same time surprising myself with almost every post. How often have a I started a post with no intention of making myself cry, only to be in tears by the end because I’ve touched on something inside myself that is still so hurt by what happened to me with this disease?

But I feel at this point that I want to transition now to a weekly blog for a few reasons. First, I’m getting to the point where I’m probably already starting to repeat myself a lot. Second, just in terms of a writing practice, I would like to challenge myself to work on something for a week and present it with more care instead of just posting the first thing that comes to mind every morning. As part of this, I would like to continue to write about life with an ostomy from my own perspective, but I would also like to incorporate more ideas and information too from outside sources. My blog has never been just an info site, or a how to kind of thing, and I don’t want to make it into that – I’d like to continue to talk about this subject more from an emotional landscape – but I would like to move beyond exclusive navel gazing and turn my gaze outward too at what is going on with other people. And finally, I need a little more of my daily morning time to work on my novel, which has not been getting enough attention of late.

So, I hope you will continue to tune in for my weekly blog, which I intend to post on Sundays. Cheers!

Years ago, when I was still in the thick of it with Crohn’s, my GI doctor organized a little educational presentation for his patients. He really liked the idea of getting his patients together to meet each other, and he wanted to do something fun, so it was a dinner at a tapas restaurant in a private room where he had a projector so that he could go over some of the history of IBD and some of the latest research while we were eating. I still can’t figure out who the bright one was who decided on a tapas restaurant. At my table, all of us were making the best decisions we could – no, too oily; I can’t do dairy; I think those spicy peppers aren’t going to work for me. We nibbled. It was also strange to eat dinner whilst being presented with large images of ass and colon. But anyway, it was a very nice and thoughtful thing my doctor organized.

But the image that I keep reflecting on was one man there who’d had surgery. This was at a time when all I knew was that there was no way in hell that I would have surgery. And I had done no research – I didn’t really have a conception of what the pouch might be like or what really happens with surgery. I just remember this man being very bright and lively, wearing some jeans, telling us how happy he was but that still even though it had been years, he could tell us where every bathroom in the restaurant was, because he’d identified them immediately. We laughed, and then my attention was drawn away from him. I remember thinking that if surgery was so great, why was he here with all of us IBD patients? If he still needed support, then it must not be that great. And I couldn’t identify anything odd about the way he looked. I couldn’t really make sense of it, so I just shrugged it off. Not applicable. I will never have surgery.

Now I can imagine why he might have been there. Maybe he felt inspired to show up at things like that because he is a living, vibrant image of something that so many IBD patients regard with fear. An ostomate. A post-surgery person. There he was, wearing jeans, eating tapas, laughing. Happy. I wasn’t ready for surgery, and therefore I couldn’t assimilate the data that was flowing in from that encounter. I set it aside. He was the first and only encounter that I was aware of with someone who’d had ostomy surgery before I had the surgery myself four years later. (Who knows how many encounters I might have had in that time, since you can’t actually tell someone is an ostomate by just looking at them). But maybe somebody else in that room was really close to making the decision to have surgery. Maybe that person visited with this man longer than I did, and maybe he or she felt encouraged that ostomy surgery might not be so bad.

I think it is really important for ostomates to share their stories, so that more IBD people have some concept of what it means to be an ostomate. And there’s no substitute for actually seeing and talking with an ostomate. Sure, I write a blog, but how many people are searching the blogs? I know that I never once thought to get online and look for blogs about it before I had my surgery in 2008. More people are becoming aware of blogs as a resource for this kind of thing, but there must be so many out there who don’t have access to blogs. I look forward to the next opportunity I have to be in a room full of IBD patients. Not to push surgery, or to brag about how great life is now, but just to be there. If a person is ready, I think just seeing me would help them to understand that surgery isn’t the worst thing that could happen.

On Sunday a close relative and I took the train downtown, where we joined some friends of mine for the Race For A Cure family walk. We needed to meet at the train station by 7:30 in the morning, and I was the one who was there on time. It was no problem for me to get up early, get ready, pick up some coffee, and get to the train station to buy tickets. I felt no butterflies in my tummy, and no concern about the train ride. I mention this, because when I was sick I really hated taking trains, and especially if they were in the morning. Mornings were when my bowels were most active, and it was such a struggle to get out of the house. Then, the stress of catching a train – to me something that is for some reason inherently stressful, in terms of getting on the right train and catching it at the right time – would make me have to go to the bathroom even more. And always the fear of what would happen if I had to go while on the train. But yesterday morning, I conveniently had a pouch attached to my abdomen, and so if there was any increased activity at all, it did not require me to run to the bathroom.

My relative arrived, looking a little worn out. Mid-ride she warned me that she would need to find a bathroom as soon as we got to the Pepsi Center. By the time we were finally approaching the port-a-potties she was nearly running. She was in there longer than I expected. I too had to go to the bathroom, but instead of using a different port-a-potty I waited until she got out to make sure she was okay. I had no urgency. I could have waited quite a bit longer before I needed to use it.

What was happening here? My relative was having a little of her own trouble with IBD, while I was having no trouble with IBD. The tables were turned. For so many years, it was exactly the opposite. It was strange to be the one who was okay, the one who felt concern and a need to help and protect her, when usually she was okay and taking care of me. For a moment, I was standing in her shoes, and I wished with all my heart that I could take away her IBD.

Last week I received an email from someone about Uncover Ostomy (see the link on my blog under Ostomy), “an online awareness campaign shaping a positive conversation about the ostomy in social media spaces.” I went to the website and learned about Jess, a 20-year-old Canadian university student, actress, and model, who was doing photo shoots that reveal her ostomy pouch. She was diagnosed with Crohn’s when she was nine, and had her ostomy when she was thirteen. So I cried. How does that not make you cry?

Then I followed some links, and arrived at IBDAdventures, a group of people – many of them Crohn’s survivors – who climbed to the summit of Mount Kilimanjaro to raise money and awareness for IBD. And I read the bios, the last one of which was a boy named Clinton Shard who is just sixteen and was diagnosed when he was twelve. And I busted up again.

It was bad enough to be diagnosed when I was twenty, but every time I hear of someone going through their teen years with something like this I just lose it. And to rise up so strong and brave and to do photo shoots to raise awareness or to travel around the world and climb mountains … who are these wonderful people? Who are these joyous spirits who fight and reach out and inspire all of us?

And I thought about my recent promise to start doing more to contribute, so I emailed CCFA and asked how I could get involved. The least I could do is help out a little for a cause that I am so close to. I will go to my first meeting Wednesday evening to learn about helping to organize CCFA’s annual walk.

During those years that I was sick, I would occasionally wander into whichever room housed the Yamaha Clavinova keyboard (a full upright, weighted key keyboard with pedals etc.) and I would sit down and try to play a song or two. I never had any formal piano training, but I wasn’t going for any awards. At a time when I didn’t have the energy even to listen to much music, there were nevertheless days when the sound of something simple, like Fur Elise or the Moonlight Sonata, moved me and made me feel, well, maybe not happy, but somehow redeemed. So I taught myself how to read music well enough to play these songs, along with a few others, and I played them now and again over the years. I never got to a point where I could play a song without making mistakes, and I never made much progress, but I enjoyed it when I could.

I’ve always felt a connection to the piano, and always regretted that I didn’t take lessons. To be honest, I did take lessons very briefly when I was five or six. My mom thought I was too young to start up with lessons, but one day my older brother was required to play through all of his songs before he could go outside to play. After he played them and put his music away and left the house, I went and sat down at the piano and played one of his songs through from beginning to end without mistake. What I would give to remember what state of mind I was in, because that I don’t remember. I just remember my mom coming out of the kitchen, spatula in hand, and looking at me with something like shock mixed with suspicion. “Did you just play that?” she asked. I nodded. She asked me to play it again, and I did. It wasn’t anything too complicated – it was a relatively simple, but two-handed version of “The Way We Were.” My mom sent me to piano lessons. But I was young, and already demonstrated the desire to do everything, a desire that obviously I still struggle with. Within a year, I dropped the lessons in favor of martial arts.

A week ago, my husband and I were having dinner at a new Whole Foods that is very close to our house, and afterwards he asked me if I wanted to take a walk around the new shopping area to see what other stores and restaurants had been established there. One of the first things I saw was a place called My Music Skool. I stopped, and stared at that sign; it was arresting me. “Do you think that’s a real music school?” I asked him. He shrugged. We continued to walk around, but somehow I couldn’t get my mind off it. I decided to step in, just to inquire, no big deal. Yes, they offered piano lessons. That night I sent the school an email inquiring about pricing, etc. But by the next morning I couldn’t even wait for an answer, so I called. The best time for me would be Thursday evenings, so the woman I spoke to chose the teacher who was available at that time.

My trial lesson was last night. I don’t know how to describe it but to say that I’m still smiling. The teacher and I connected. No, we CONNECTED. He is an Emmy-award winning composer who has composed for something like 100 TV shows, documentaries, and movies. He just happens to like teaching as well and just happens to live in the same area. Furthermore – I don’t want to get too detailed with his info – but let’s just say he totally gets what I’ve gone through for the last eleven years with Crohn’s. And when I mentioned that I write fiction and that I had written a screenplay that was an historical biopic based on a true story, it turned out that he too has written a screenplay, and that most of the music he composes is for dramas and especially historical dramas, and that he would be really happy to read my screenplay and connect me to people in the industry. What are the chances? And we like the same kind of piano music, and with him I can learn both the classical music that really moves me, as well as how to “comp,” which is how to sit down and pick up something like a Neil Young song relatively quickly so that I can play songs with my husband (him on guitar).

I know that I have a propensity to overextend myself, but I’m really excited about taking these piano lessons. Not to mention pulling out that screenplay that I shelved.

I usually write my blog bright and early, a cup of coffee at my side. But it turns out that once you are active and healthy again and working just like regular working people do, you occasionally have a lousy kind of work day. The moment I sat down at my computer to check my email this morning, I was immediately chained to my chair to solve urgent problems. I didn’t even have my first cup of coffee until noon and I didn’t manage to change out of my pajamas until 2 and if you’ve read my blog at all, you know I really hate staying in my pajamas all day because that’s what I did when I was sick.

But life moves on, and I got paid all day which is, I suppose, the bottom line. And now, as I sit here sipping a glass of wine and waiting for my super yummy Whole Foods spinach and mushroom pizza to finish cooking, and I get ready for some mindless entertainment and a cozy cat by my side, I have to admit that life is pretty good. Because even the tough days are nothing compared to being sick all day. In fact, today wasn’t even lousy now that I think about it. Lousy is sitting on the toilet. Today was cake.