Slowing down time between stomaversaries

Yesterday was Wilbur the Stoma’s birthday! I know the past five years since surgery have contained days and days of incredible adventures, but somehow the time has still gone by in a flash. With the sense of normalcy I now have with my stoma, the memories of  those early days are starting to fade.

I love looking back on my blog posts and videos as they help me to connect with who I was in those initial years after surgery, but so much of that time is also a blur. Life sprints ahead when I wish it would meander along in a stroll. It feels like summer was just here, and now the trees are already missing their leaves. Before I know it, I will be celebrating my six-year stomaversary. I want to slow down and savor moments more. Fortunately, I have found a secret for reaching that objective: nature journaling.

I first started nature journaling in the 1990s when my love of keeping diaries and passion for sketching merged and forever changed my relationship with nature. In my journals, I could playfully record natural happenings, curiously ponder what I was witnessing and write down my feelings about it all. At the end of a journaling session, a moment in nature and in my life had been noticed and preserved on the page (and in my memory)! Through my journals, I felt more connected to the natural world and to my soul.

The problem was, despite my best intentions, there were huge chunks of time over the years when I didn’t write or draw in my journals.  My post-surgery years were one of those stretches. What the birds, trees and flowers were doing during those moments I cannot say. And that made me sad.

I don’t get along well with unhappiness, so I am in the process of purging other things from my schedule in order to have more personal time to journal. As small details in the lives of box elders, woodpeckers, praying mantises and other flora and fauna are noted on paper, the hectic pace of my own life slows down and feels richer. Over the past two years, I have filled half the pages in a large sketchbook. That is a big improvement from when my nature journal sat mostly untouched after surgery, but I can do better. I aim to fill the second half of that journal in the next few months.

Mantis sketch

To further build my journaling skills, I attended a three-day workshop in the Marin Headlands of California last weekend with two of my favorite nature journalists, John Muir Laws and Clare Walker Leslie. The experience was beyond-words inspiring. We greeted the birds with our sketchbooks at sunrise, explored the coastline with pens in hand in the afternoon and captured the sunset on our pages. After a short break for dinner, we drew taxidermy mounts in the conference center’s teaching lab until bedtime.  At one point during the trip, I spent an entire hour sketching scat, tracks and other signs left by otters in their travel corridor between a pond and canal. Observing and recording the natural world that keenly for three days straight was remarkable and allowed me to slow down and ground myself in the present. Refreshed and inspirited, I left the workshop with a goal of writing and drawing in my nature journal more frequently.

Journaling on the coast

Otter trail sketch

One of the ideas that resonated most strongly for me was Clare Walker Leslie’s practice of recording daily “small wonders.”  When I didn’t have time to create an entire journal page of nature observations, simply documenting one exceptional image from the day could help connect me with what was happening in the natural world. Whenever I needed to recall those moments, they would be there waiting for me in the pages. I started my first series of these this week, and I am hooked.

Daily sketches

Time can’t actually slow down, and the 365 days until my next stomaversary will come and go whether or not I nature journal. However, closely observing and recording happenings in the natural world  helps each day to stand out. It’s hard for life to be a blur when you are looking with focused eyes. I might record tracks in the snow after winter’s first blizzard, the first blooms of spring, a spotted fawn in the tall summer grass and all the things that make the world so breathtakingly beautiful. Five years ago surgery gave me a second chance at life. It’s time I start paying greater attention.

“Ten times a day something happens to me like this – some strengthening throb of amazement – some good sweet empathic ping and swell. This is the first, the wildest and the wisest thing I know: that the soul exists and is built entirely out of attentiveness.”

~ Mary Oliver

Nature journaling

 

A forgotten anniversary

Yesterday morning while perusing Facebook, I saw a post by Brian Greenberg, founder of the Intense Intestines Foundation, regarding the four-year anniversary of his ileostomy surgery on November 9th. I was thinking about how awesome it was that he had accomplished so much since his operation and how happy I was for him. Then I came to a sudden realization: if Brian was celebrating his stoma’s birthday, it meant that I had completely missed the anniversary of my own surgery. You see, when I first discovered Brian’s website a few years ago, I found out that it wasn’t only a love of the outdoors that we had in common: our surgery dates were only one day apart. When I was getting used to my first day as an ostomate, Brian was being wheeled into the operating room. I remember wishing I had known him then. We would have had much to talk about as we prepped for and recovered from surgery.

Now, four years later, I couldn’t believe I had actually forgotten about my stomaversary. It was a date I always ardently celebrated. My surgery had given me my life back and had allowed me to do all the things I loved again. To think I had let my stoma’s birthday pass by without notice made me feel sad and disappointed.

However, I soon started to look at my forgotten stomaversary differently. The reason I had my ostomy surgery was so that I could return to all the things I love and lead a normal life again. I wanted a life in which my family, friends, hobbies and career were at the forefront and health issues faded into the background. Yet in those initial weeks after surgery, my stoma dominated my world. More than anything, I just wanted to get to point where it felt like my ostomy was part of me and not something I had to think of at every moment. On November 8th, I gave my ostomy nary a thought. Perhaps forgetting about my stoma really was the best way to celebrate how far I have come in the past four years.

That said, I don’t intend to let the date slip by again. Wilbur, my stoma buddy, we will definitely celebrate your 5th birthday with a bit more fanfare next year!

Hiking the day after my stomaversary-- completely unaware that I had failed to remember the important date. I guess I was too busy trying to figure out how far I could lean into 60 mile-per-hour winds without falling over.
I went for a hike with family and friends the day after my stomaversary. It would have been the perfect chance to celebrate, but I was completely oblivious to the important date. I guess I was too busy trying to figure out how far I could lean into 60 mile-per-hour winds without falling over to think of such matters.

 

Happy travels! (feat. new video)

Last month, I wrote about a climbing road trip that Doug and I took to Idaho and Oregon. We finally completed a video highlighting the vacation. It is a long film at 30 minutes, but there was a lot to cover on this 17-day adventure.

Getting out and traveling with your ostomy provides some very significant confidence-building opportunities. You have to change and empty your appliance in unfamiliar surroundings and you must learn how to adapt to having an ostomy in unique situations. Unknowns abound with each bend in the road and each new town on the map. Dealing with each of these new situations stretches your comfort zone and leads to growth and tenacity. So, if you are just recovering from surgery, plan a trip if you can — even if it is just a weekend getaway.  If you have had your surgery for a while, get out on a longer excursion and try something new.

Two years!

November 8th marked the two-year anniversary of my ileostomy surgery. It had been a hectic week, and I was in the mood for some quiet reflection time. I climbed a mesa near town, took in the scenery, and sketched and wrote in my journal.

As great as it was to quietly contemplate my two-year stoma anniversary on top of the mesa, something more festive was definitely in order. Once I got back home, I threw a little party with Doug, complete with  homemade culinary delights: chicken pesto pizza and a cake decorated like a colon.

Looking back, I am still in awe that it has already been two years. In those initial months after surgery, time crawled by slowly and every bit of my attention was focused on healing and getting used to the changes to my body. I thought of nothing but my ostomy and appliance. Now all those hard times seem to have gone by in a flash. My stoma has become part of me, and large portions of the day go by when I don’t think about it at all. When I do think about it, it is often with a feeling of gratitude. It may sound crazy to say I love my ostomy — but I really do. This day marked a special anniversary, but everyday is a celebration of the health my stoma has given back to me.

Celebrating my two-year surgery anniversary. It is hard to not look at the cake and map out all the areas where I had colon inflammation over the years. I chose the cecum for my first piece of cake. 🙂

Drawing my way out of the doldrums

My first mainly sedentary week has been hard mentally. I wish so much that I could go for a hike or run, but just walking around the grocery store makes my hip throb with pain, so that is not going to be a reality any time soon. I went swimming at the gym and did an upper-body weight workout. Both of those activities went okay, but it feels like all the amazing  progress I made working out with my personal trainer is going to slip away.

When sadness and anxiety start to take over and I can’t deal with the stress using exercise, I often turn to my nature journal to lift my spirits. Somewhere in those moments when I am looking closely at the pattern of veins in a leaf, and my pen is moving over paper recording what I see, my mind finds peace. Expect to see many drawings in the weeks ahead!

 

Climbing progress

On Sunday I climbed a few feet above the fourth bolt on the wall at the rock climbing gym, held my breath, and jumped off. I felt a few butterflies in my stomach as I free-fell 10 feet before my rope and harness caught me and brought me to a stop. Doug lowered me to the ground where a staff member gave me a smile and a casual “nice job” nod. I had just passed the test to be able to lead climb at our local rock gym. This was my second such test. I had also taken one in Fort Collins last month at the gym we sometimes climb at with Doug’s father.

In lead climbing, a climber clips their rope into protection placed in the rock (or on the artificial gym-wall) as they go. This “pro” is either: 1) temporary equipment that a climber places in cracks outdoors, or 2) permanent, preexisting bolts drilled into the rock or artificial wall. If a climber falls above the last piece they clipped, they will travel some distance before the rope catches. For instance, if a person falls three feet above their pro, they will fall that distance plus three more feet until the rope catches. Factor in a bit of rope stretch and the total distance could be 10 feet. The climbing gym wants to make sure climbers know how to safely clip their rope into the bolts on the wall and fall properly before they will allow you to lead climb.

Top roping is a different style of protecting the climber in which the person will only fall a short distance because the rope is already anchored at the top of the cliff or wall. When I began climbing again a year after ostomy surgery, I started with top rope climbing. Though I am now leading in the gym, it will be a while before I feel confident to lead routes outdoors again where there are more hazards.

Nothing has been a bigger symbol of my climbing progress as being able to get back on the “sharp end” of the rope. I was fearful of what a big fall might feel like after surgery. Would falling several feet in my harness hurt my stoma? Would the resulting tug make my pouch pop off? As has often been the case when returning to my active pursuits, none of my fears came true, and my stoma and pouching system held up just fine through the tests at the gym.

Lead climbing has not been my only measure of progress lately. While climbing weekly, I am quickly moving up the grades and getting on some overhanging routes (steeper than 90 degrees). When I returned to the rock gym five months ago, I didn’t even try to do any marked climbs — I just grabbed any hold on the wall. Soon after, I was only using the “on route” holds, but sticking to routes in the 5.7 range. Last month I ventured into the 5.8 and 5.9 territory, and last weekend I did my first 5.10-. I am feeling powerful and strong with not the slightest pain in my core.

When I got back into climbing, I told myself that I would be happy doing 5.7 routes for the rest of my life if that was all my body could handle. All that mattered was that I could climb again. However, I now see that these restrictions won’t be necessary. By conditioning my body, progressing slowly to build the required strength, and always wearing my six-inch-wide hernia belt, I am quickly returning to my pre-surgery climbing abilities. I look forward to warmer days when I can start climbing outdoors on a regular basis and head out on some much longer routes. And, of course, I’ll share some of those through videos!

Craving normalcy (feat. new video)

In the initial months after ileostomy surgery, all I craved was normalcy. Life as I knew it had completely disappeared. Gone were the days of getting up and going to the office to work on a variety of enjoyable challenges like writing nature-education curriculum and leading hikes. In my free time, there were no more hiking, snowboarding or running adventures anywhere on the horizon. Instead, life revolved around the wiggly red stoma on my belly. My days played out around endless worries and looked something like this:

7 a.m.  How am I going to get my appliance on while my stoma is spewing liquid output everywhere?

9:30 a.m. Okay… got the appliance on. Wait, is that skin showing between my barrier ring and stoma? Geez, maybe I should do it over. My output will certainly eat away my skin if it touches that exposed 1/8 inch. But will it destroy my skin more if I pull the wafer off so soon? I better just do it to be on the safe side.

10:30 a.m. I can’t believe it took me over two hours to get an appliance on and this second one still doesn’t look that great. I need to call Doug and vent about it or I will cry for hours.

10:45 a.m. I need to drink some water. I am already way behind on my liquids today and I haven’t eaten breakfast yet either.  I am really not hungry, but Dr. Brown said I need more protein. Is a protein shake and eggs enough?

11:30 a.m. I have only been up for a few hours and I am already tired. Better go take a nap. Am I always going to have to sleep this much?

1:30 p.m. Is that just a regular itch or is it from output touching my skin? Man, this incision hurts. I am not hungry, but I need to eat with my pain pills. I better have some lunch. When are these pain pills going to kick in? Drat, maybe I should have just sucked it up and not taken the pills. What if I become addicted to them?

2 p.m. Why am I watching this stupid TV show? Shouldn’t I be doing something productive? I am just too tired. Dang, I forgot to order those Hollister samples again. I am too tired to do that too. I can’t believe I am about to take another nap. I am supposed to be going for a walk right now, not sleeping.

3:30 p.m. The neighbors must be wondering what happened to me. I am walking so slow and hunched over, but it hurts too much to stand up straight. Is this two-block walk through the park really all I can muster? I can’t believe how much this hurts. This used to be my warm-up walk before I ran five miles, and now I can’t even cover this short distance. And I’m walking as slowly as a turtle.

4 p.m. I miss Doug. I am so lonely stuck here by myself. When is he coming home from work?

5 p.m. Doug is home! Doug is home! Doug is home!

6 p.m. Is this too late to be eating dinner? I am supposed to eat before now, but that isn’t very handy. Is four weeks post-op too soon to eat steamed broccoli if I chew it really, really well? I am so hungry for veggies. What if I get a blockage? Or horrible gas?

7 p.m. Wasn’t that just the 12th time I emptied my pouch for the day? When is this output going to slow down! It is like water. Have I had enough liquids to drink to offset that?

9 p.m. Okay, time to take a shower. Can I get this appliance wet? I better tape plastic wrap all over my belly just to make sure it stays dry and doesn’t peel off.

10 p.m. Time for bed. I should lie on my right side all night just in case I leak. Don’t want to get stool into my open wound.

11 p.m. My back hurts. I sure wish I could lie on my left side but I am too afraid.

12 a.m. Better get up to empty my appliance just in case.

2 a.m. Better get up to empty my appliance just in case.

4 a.m. Better get up to empty my appliance just in case.

7 a.m Thank goodness it is morning but I don’t want to get up. I am going to lie here and cry for a while. Will my life ever be normal again?

And so it went for the initial couple months after surgery. I was overwhelmed and depressed that my entire life now seemed to revolve around my stoma. I tried and tried to picture what things would be like when everything settled down, and I actually learned how to manage my ostomy, but it seemed impossible. I couldn’t see beyond the hard times I was facing in those moments. It was particularly difficult to imagine how I could possibly ever do outdoor sports like snowboarding again.

I wish I would have had a crystal ball back then. Had I, I would have seen that I shouldn’t have worried so much. My ostomy output would settle down as my body adapted. I would figure out my systems and become more efficient with them. My incision would heal. Someday in the not so distant future, my ostomy would feel like a regular part of my life as I returned to work and went on outdoor adventures again. In the crystal ball, I would have seen the point I am at now when everything is so much easier. The normalcy I craved after surgery has been restored to my life.

Last Sunday was a beautiful powder day in the mountains, and Doug and I headed up to go snowboarding. I decided to film the day’s events and create a video showing a typical day on the slopes with my ostomy. I realize everyone’s experiences are going to be a little different regarding their emptying schedule, when they eat, etc. What I hope to show is that once a person adapts to life with an ostomy and gets their own particular systems down, life can feel wonderfully natural again.

Healing the mind as well as the body

I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.

However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.

These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.

Continue reading “Healing the mind as well as the body”

Part four in a series: I am thankful for my surgeon

I am thankful for my surgeon, Dr. Craig Brown

How could I possibly be laughing? I had just been wheeled into the sterile operating room, had scooted over onto the operating table and was now gazing at the big round lights looming above with doctors and nurses in masks poised over me. Wouldn’t anxiousness have been a more appropriate reaction to this scenario than this sudden case of the giggles? And no, it wasn’t medication or nervousness causing me to crack up; it was Dr. Brown’s sense of humor. The room was freezing and he had just said something hilarious about this being my third surgery and how it was supposed to earn me a free cup of soup. Dr. Brown could always tell the funniest story or joke at exactly the perfect time to make me smile and erase my worries for at least a few minutes. And when you are feeling awful and terrified, even small moments of laughter are a big deal.

Dr. Brown’s sense of humor was just one of the many things that made him the best doctor I have ever had. Anyone with a medical worry can relate to the unbelievable sense of relief that comes with simply hearing your doctor’s voice on the phone advising you on what to do next when you are anxious about something. Dr. Brown was always there to help me out with concerns and is the most accessible doctor I have ever worked with. When I had problems, I didn’t talk to his nurse– I talked to him. He called often to check in both at the hospital and when I was back at home… sometimes even on the weekends. The speed at which he returned calls was unbelievable. He even squeezed me in for quick office visits at the last minute when I was concerned about something. I know he had many other patients, so I am still not sure how he did it. Maybe he is really a superhero?

Dr. Brown is most definitely a surgical one. His knowledge and skills are impeccable and I developed absolute trust in his judgment. A month out of surgery, I was having some issues and Dr. Brown sent me over to the ER to get a CT scan. After I had the test, other doctors came in and told Doug and me about the next steps. They did a fine job, but I still couldn’t wait for Dr. Brown to stop back to discuss the results and plan. Somehow it put me at ease to hear about it all from the doctor that I trusted the most.

Much of that trust came from Dr. Brown’s amazing bedside manner. He had the exceptional ability to be both direct and honest in his communication, but also compassionate and kind. He took the time to get to know both Doug and me, and treated us as friends. One day he called up to my hospital room just to recommend that I stroll to a nearby park because it was nice outside.

What do you think?  That was one of the things Dr. Brown said often. He really took the time to listen and get our opinions. He empowered Doug to be a partner in my care and spent just as much time answering Doug’s questions as my own. I can remember sitting on the couch and hearing the two of them talking on the phone about how to carefully pack gauze into a small tunnel that had developed in my abdominal wound. I loved it because Doug had never done anything like that before, but really wanted to do the best job possible. Dr. Brown was always so encouraging and confidence-inspiring.

When I was in the hospital with my final UC flare, my GI doctor told me that if I wanted to pursue surgery, she wanted me to have my operation with the best. I will forever be grateful that the referral sheet she gave me had Dr. Craig Brown’s name on it.

Part three in a series: I am thankful for my family

I am thankful for my Family

“I think it is going to bust open,” I cried in a panicked voice. A small gap in my incision had formed the day before, and I had just lifted up a dressing to discover that it was now twice as long, much deeper, and oozing copious amounts of drainage. As always seemed to be the case when things went awry for me post-surgery,  it was the weekend which meant I had to wait a couple of days to get in to see my surgeon. Fortunately, my mom, who had flown in from Washington to help me out, was there to keep me from going crazy with worry.

There is nothing like having your mom close by when you are hurting, and her presence comforted me to no end. My mom and I have always been close, and during her visit, it felt just like the old days when we spent a lot of time together. In the two weeks she was here, we managed to have lots of those mother-daughter chats that I miss so much. We also took trips to the mall so I could get my post-surgery exercise and try on fun clothes to help me feel confident about my brand new ostomy. She cooked for Doug and I, and even made a just-out-of-surgery-safe Thanksgiving dinner. Even though I felt poorly, I have the fondest memories of her visit. When she left, I cried because I missed having her here.

My mom and I right before she headed back to WA after helping me out for two weeks post-surgery.

I know my dad wanted to be here too, but he was not able to make the trip out from Washington state with my mom. That was okay… his love was with me. I also knew he was sitting back there worrying about me every second like dads always do. He called every day to check in and let me know he was thinking about me. I was grateful for the sacrifice he made in being without Mom to keep him company for two weeks. I know it must have been a very difficult and lonely period, especially the timing being right over Thanksgiving which is normally a time to be close to your loved-ones.

Still, my family is used to being spread out over great distances. Not only do my parents live all the way out in Washington, but my older brother lives in New York City and at the time of my surgery, my younger brother was living in B.C., Canada. He now lives in New York City too. Though they couldn’t be near, my brothers called often to give me support when I was making tough decisions about surgery and to cheer me up after the operation. It was fun explaining to them what it was like to have an ostomy. I am sad that I hardly ever get to see them, but I feel their love with me all the time. Usually when my brothers and I finally meet up again, even if a year or two has gone by since we last saw each other, we start talking and hanging out like barely a day has gone by. I love that.

Doug’s parents were there for me as well. When I was in the hospital with my UC flare, my doctors would allow me to go for walks outside as long as I was with someone and it was during the daylight hours. Doug couldn’t always get off from work during those times, so his parents would come visit often and take me on strolls outside. Those days in the hospital were so long and monotonous, and I appreciated their visits so much. Once I could start eating regular foods again, they brought gluten-free pretzels and cookie treats to my  hospital room to help me start gaining the 25 pounds I had lost. While I was later recovering from surgery, Doug and I would go up to his parent’s house in Fort Collins on the weekends where I could rest while also getting a change of scenery. In between short walks outside, I would curl up on the couch and watch football games with Doug and his dad, usually dozing off until a loud HOORAY would wake me up and alert me to changes in the score. To this day, whenever I am up at their house, it feels like a place of refuge. I look at those couches and just want to cuddle up in a blanket. So much healing happened there and I am so thankful for the love and support of Doug’s family.

When the incision I mentioned did end up opening due to my body being uncooperative in its healing, I found myself heading back to surgery to have it repaired. The hospital had signs posted that only a couple of family members were allowed in the pre-op area at once, but due to the evening hour and things being slow, the staff made an exception. There around my bed were Doug, my mom and Doug’s parents all cheering me on. I knew my dad and brothers were thinking of me too. At that moment, I felt the incredible love of my family so strongly. They were there for me then and always are.