Last Sunday I went for a hike. Not because I wanted to exercise or take in some scenery, but because I needed to say goodbye to a close friend who passed away from brain cancer late Saturday night. After battling the cancer for a little over a year, Jason ran out of treatment options and began hospice care in the end of February. His final decline happened so quickly over a matter of a week that my head and heart are still trying to comprehend the loss. I am utterly heartbroken.
When I learned of Jason’s death, I did the thing that felt natural to me… the thing that helps me deal with grief the most. I grabbed my hiking shoes, journal, watercolors and pens and headed for the hills. I wanted to be in a place that was strong with his memory, so I drove to a nearby park that Doug and I had visited with Jason and his family a few years ago.
On that trip we had all hiked to the top of a mesa, so I chose to retrace that route. When I got to the top, I sat on the edge and took my art and writing materials out of my backpack. Through tears, I dipped my paintbrush into my watercolors and captured onto the page that landscape that held such cherished memories. At that moment I knew that the mesa would forever be the place I go to when I want to remember Jason.
Then I took out my pen and wrote a goodbye to him in the pages of my journal. By that time, it had become extremely blustery on the mesa and I could hardly hold my book and pen steady. When I was finished, I read what I had written out loud. As the words left my mouth, I pictured the wind carrying them to our dear friend.
Jason– I hope they reached you and that you know how much you are loved and missed.
Last Tuesday evening, I left work in a gorgeous swirl of falling snow but promptly got stuck in standstill traffic due to slippery road conditions. I half-thought of exiting the freeway and heading home, but the destination was too important and I knew that getting there would soon melt away any stress that had accumulated on the drive. In fact, it was almost guaranteed that I would leave the event in a good mood. I always do. So where was I heading that had me filled with such eager anticipation?
The fourth Tuesday of every month is my Ostomy Association of Metro Denver meeting. I started going to these meetings as soon as I was healed enough after surgery to get to them and quickly discovered how valuable they were. When you have a condition that is hard to talk about with most people, there is a feeling of instant comfort that comes from being surrounded by others who immediately understand what you are going through. A place where it is okay to talk about normally taboo subjects such as gas, rectums and bowel movements. Now that I have been attending the meetings for almost two years, I cannot imagine not having this support system in my life. I absolutely love talking to those who are facing or recovering from surgery and doing what I can to offer encouragement. I head home from every gathering wishing I had more time to talk to everyone and eager for next month’s meeting to arrive.
One thing that I hear many young people on IBD and ostomy internet forums say is how they often walk into such meetings and feel that they are the only one in their age group there. Many times these people don’t come back for this reason, and I think it is really unfortunate. Regardless of age, everyone can relate to the overwhelming emotions that come with ostomy surgery. Though different for each person, we all have stories of difficult times, fears we are facing, successes we are celebrating and hopes and dreams for our lives beyond illness. Coming together to share our experiences and thoughts on these things can offer profound opportunities for healing. I love the conversations I have at the meetings and learn something from every single person there whether they are 25 or 70 years old.
And guess what? If you wish that there were more people at the meetings your age– stick around. The next time someone else your age is nervously walking down the hall towards the meeting room and peeks in, they will see you there and feel less apprehensive. If that person chooses to also come back next time, it has a ripple effect and soon the group becomes more diverse. Make the meetings be what you want them to be by participating and returning for the next one.
If you don’t have access to a local support group to meet people in person, there are many groups to join on the internet. I wrote a post a while back about the importance of reaching out to others online. One of my biggest twists of luck when I was in the hospital and facing the possibility ostomy surgery was that my room had a good internet connection. Whenever my favorite nurse would see me typing away on my computer at an intense pace, she would always remind of how fortunate I was to be in that room because many of the others on the floor had poor Wi-Fi signals. I don’t know what I would have done without my computer. It became a lifeline from my isolated hospital room and allowed me to meet others who had gone through surgery and gone on to lead active lives.
Because of my own experience in reaching out for help when I was sick, it is a huge priority of mine to try to answer every single comment and email I receive on this site. Sometimes it takes me a little while due to a busy schedule, but you will hear from me if you write. Last fall, an email appeared in my box from another local adventurous ostomate: Lewis Benedict. That initial contact led to other opportunities to meet up including a recent hike of Twin Sisters Peaks in Rocky Mountain National Park. Lewis is now working on his own ostomy awareness website, ostomatevillage.com, and was even on cover of The Phoenix magazine this quarter! I am so proud of his accomplishments and look forward to many future adventures with Lewis and his wife, Tara.
I am thankful everyday that I have met so many amazing people through my ostomy association meetings, OstomyOutdoors.com, and other websites and social media. You all inspire me to no end and help keep me motivated when my own life presents challenges.
I am going to end this post with a video of the hike with Lewis mentioned above. I hope it provides some inspiration to get out there and meet other people with ostomies. If you are feeling alone while facing or recovering from surgery, or if you just want to meet other people who have been through similar things, know that there is a strong ostomy community out there. You just have to reach out.
I had been planning all week to write a post today about a great product I tried out, but my mind isn’t in it. Yesterday, I found out some devastating news. One of our friends, who happens to be my age, is battling brain cancer. In a matter of 24 hours, he went from thinking he just wasn’t feeling well to being rushed off to emergency surgery and getting the shocking diagnosis.
After finding this out, Doug and I drove to a quiet place to talk and reflect on it all. We cried for the unimaginable fear and uncertainty my friend and his wife and young daughter are facing right now. We reflected on how strong our friends are and how much we love and care about them. Doug and I talked about our own love and life together, knowing full well that what is happening to our friends can happen to anyone. There are simply no guarantees. I spent last night in a strange swirl of vivid dreams featuring my friend and his family, doctors, and my own family. I woke up knowing that my mind is going to be struggling with all of this for a long, long time. I am sad, angry at the unfairness of life and hopeful that my friend will recover.
It is strange how life seems to “package” experiences sometimes. I have been thinking so much about uncertainty lately due to my own health issues (which now seem like a minor inconvenience compared to what my friend is going through). I have been thinking about how necessary it is to live in the moment and take things day by day. Last week, my employer brought in an amazing speaker at one of our annual staff meetings. He talked about leading an authentic life and the things that make us happy. I had been reflecting a lot on the message of that talk since hearing it—trying to figure out how his words fit into my own experiences and what they meant to me. It just became more clear. One of his key points was how important relationships and people are in our lives. More and more I am coming to the realization, that for me at least, life isn’t about getting off to exotic locales, or climbing this peak, or hiking that trail. Sure those things are fun, but when it comes down to it, the things that give me the most joy in life are spending time with those I love and helping other people in the ways I am able. I feel that I am in the beginning stages of shifting my life to better reflect these priorities.
So give those you love a big hug today. Call that friend. Write that letter. Help out another person. And if you are willing, please say a prayer for my friend and his family.
I first learned about the Crohn’s and Colitis Foundation of America’s Camp Oasis when I was stuck in the hospital for 16 days with my final flare-up of ulcerative colitis. I had been researching treatment and surgery options on my laptop from my hospital bed, and somehow stumbled upon a link to a website for the camp. As I was looking through the photos of the children at camp, I was immediately inspired. Knowing how hard dealing with UC was in my 30s, I couldn’t imagine how difficult it must be to have the disease as a child. All the things I took for granted as a youngster, like attending school functions, taking part in school activities like plays or sports, or going to summer camp would all be very challenging. The mission of Camp Oasis is to enrich the lives of children with Crohn’s disease and ulcerative colitis by providing a safe and supportive camp community. As I read about Camp Oasis, I was so deeply moved that I promised myself I would look into volunteering there after I recovered.
In February, I started to research the dates for the camp that takes place in my home state of Colorado. I was happy to discover that I had no work conflicts during one of the sessions and could request time off to be away for a week. I sent in an application, was interviewed, and found out a couple of weeks ago that I was accepted as a volunteer for the camp session for 7- to 13-year-olds in July. Today I went in for some vaccinations that are recommended for all camp staff and volunteers, and I am working on completing my paperwork.
Growing up, I loved being outdoors and my family did a lot of camping. I also took part in some summer camps with Girl Scouts and other organizations where we did nature study, sports, and arts and crafts. These early experiences had a major influence on me and laid the foundations for my love of nature, outdoor adventure, and art. Yet I often wonder: Had I developed IBD at a much younger age, would I have been able to be involved in these things? Thanks to Camp Oasis, many children with IBD do have the chance to take part in such fun, life-enriching experiences. I am eager to help children at camp discover all the amazing things they can accomplish. I can’t wait for July!
When I got out of the car and looked at the trail slicing across the hillside, I was intimidated. It started out steep right from the start, and I knew it wouldn’t ease up until it reached the summit of Horsetooth Rock. I didn’t have much faith in my ability to do a run of this magnitude since my longest run to date after my ileostomy operation had only been around 3 miles on flat terrain. This trip would be 5 miles with over 1,400 feet of elevation gain. Normally, I would have built up to a run like this, but we had decided to do this on the spur of the moment. In fact, the trip was so spontaneous that I didn’t even have any of my usual trail running gear such as my CamelBak water pack. Fortunately, Doug’s parents had a water-carrying waist pack to loan us which Doug carried.
Running, even on flat terrain, had been one of the harder fitness activities for me to get back into. Since starting up again last summer, I always became fatigued and seemed to be progressing at a turtle’s pace. As I started to run up the hill, I fully expected to get extremely tired. I don’t know if it was the gorgeous scenery or the fact that I was elated to be doing my first real trail run since surgery, but I felt amazing as I ascended the trail and didn’t want to stop. I bounded over roots, up rock stairs and just kept going. I did get some rests because the trail was very icy in spots, which necessitated some walking to negotiate the terrain. However, had it been dry, I think I would have been able to run almost non-stop. I felt that good.
The last 200 feet required scrambling up rock, and then we were on the gorgeous summit. I had made it! The descent was tricky due to all the ice, and I ended up scooting down on my butt in a few sections that were really dicey—or on my belly like an otter just for fun. I was so happy when I got back to the car. I could not believe what I had just accomplished.
My feeling of elation was short-lived however. When I got home, I logged into my Facebook account to see if anyone had commented on a post I had made about the run right before I left. I also checked my friend Charis’s page to see what she was up to. She had had permanent ileostomy surgery in September, and had just made a list of New Year’s goals that she was excited about accomplishing with her renewed health (read more about these experiences at her Facebook page and website.) I was anticipating an update about a workout she had accomplished or something else cool that she had done, but instead found a post sharing bad news.
At the exact time I had written on Facebook before my trail run departure, Charis had written a post about waking up with intense abdominal pain. In the time I was jubilantly running up the trail, she had realized she likely had an obstruction. As I got back to the car and then headed back home satisfied with the morning, my friend was in her vehicle traveling to the ER and facing fears and uncertainties.
The news sent my emotions reeling and the tears welled up. One of Charis’s resolutions for 2012 was to not have to go to the hospital, and here she was spending the second day of the new year in that exact place. I couldn’t believe this was happening. I wished so hard that she could get out of that hospital fast and get back to doing the things she loved. However, as the days progressed, my friend discovered that the obstruction, which had since passed, had happened because her bowel was narrowing and possibly had a twist. She had to head back to surgery to get it resolved. I was so angry that she had to go through this all. It wasn’t fair. She had already traveled such a long and difficult road with this illness.
I guess not one of us knows what lies ahead with our health. All we can ever do is live life to the fullest and celebrate during those moments when we are feeling well, and stay positive and brave through the times of pain and uncertainty. Charis is a shining example of this. She is one of the strongest people I know, and her positive attitude and fortitude during trying times is inspirational. I know she will get through this latest surgery, heal up and work towards her goals at a feverish pace. As she does, I will be right there cheering her on through all the ups and downs.
Happy New Year everyone! I hope 2012 brings health and many blessings.
As I set out to write my first post for 2012, I couldn’t decide if it would be best to look forward and write about my goals for the coming year, or if it would be better to reflect on highlights from 2011. As you are about to find out, I like to juggle a lot of things. I might as well keep up with that tendency and write about both in the same post!
I have never been a fan of creating a formal list of New Year’s goals. I have a lot of interests and love them all… everything from activities at work, working on projects involving ostomy awareness, artistic endeavors, fitness goals, to trips Doug and I want to go on. I get a little frustrated when I try to make a formal goal list because there is so much I want to do! I soon discover that it is probably unrealistic to accomplish it all. That said, there are a few things that are a high priority this year.
I want to do a better job of keeping in touch with my friends and family. To all my family and good friends who are reading this: did most of you get a Christmas card from me??? (Rhetorical question!) I didn’t think so. The same busyness I mentioned above sometimes keeps me from answering emails, writing or calling people, and spending time with my loved ones. I want to be better about making sure these people know how much they mean to me.
I want to continue sharing my thoughts on this site. No need to elaborate much more on this one. I have a huge passion for showing people what is possible after ostomy surgery and hope to keep writing and creating videos.
I want to get back into working on art. My creative endeavors like drawing, painting, blockprinting and keeping illustrated journals are also big passions for me, and I keep another website covering some of those pursuits. If you visit the site you will see that my last post was completed in August. Not so good. And there is a printmaking project that has been gathering dust on my art studio table for over a year. Art needs to be part of my life again. I realize that may mean a few less posts here, as there are only so many hours in a day, but I am going to try to balance both…. all while working and doing outdoor adventures and exercising. Whew! It is going to be a busy year.
I want to go on a climbing road trip. Two weeks, camping near the crags, waking up and firing up the camp stove, climbing routes all day and then coming back to camp to relax with a beer only to do it all again the next day — that is what I am longing for this year. When Doug and I were in college we spent a summer living out of the back of our truck and traveling the west, climbing pretty much non-stop. I am psyched to get back to that, even if it is only for a couple of weeks. I wasn’t strong enough for this type of trip in 2011, but I will be in 2012 and look forward to doing it with an ostomy!
I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December. I am only up to running about three miles right now. However, I have almost a year to train and it seems like I am finally getting off the plateau I have been stuck on. I am feeling so much stronger on runs lately and plan to inch up the intensity a bit in the ensuing weeks.
Now to rewind and reflect on 2011– the first full year of living with my ostomy. There have been so many highlights this year and most of them have already been covered in posts. Great times with friends and family, fun outdoor trips, stellar surgery results– I could write a book on all the amazing things about this year. To keep this post from becoming as long as a large novel, I will cover just a few major categorical highlights. Here are the best of the best for 2011:
Discovering my body’s ability to heal. There are many, many examples of this, but there is one that sticks in my mind the most. Ten weeks after my initial surgery, I had to have an operation on my incision, and my surgeon ended up removing some sutures that my body had reacted poorly to and then fixing things up. The resulting wound had to heal from “the inside out” with the help of a wound vac. Seeing that wound for the first time was a surreal experience. It was 13 cm long by about 3 cm wide and another 1 cm or so deep. I had to detach mentally to view it, and when I did, it reminded me of an interesting dissection project from biology class. Actually, my scientist-side was pretty fascinated– it was certainly not a part of me that I had ever gotten to see before (and hopefully never would again). Right before my eyes I could see my abdominal wall and the layers of skin tissue on the sides of the wound opening. What happened in the following six weeks was even more captivating (okay… except for the pain of the wound vac which was really bad for me at times). The wound filled up with healthy red granulated tissue and then sort of zipped itself up from top to bottom. How did my body know how to do that? It was absolutely amazing! I thought I would end up with a heinous scar, but it actually looks pretty great considering the wound that was there before. Now whenever my body is healing, even from something as small as a pulled muscle, I think about that experience. The body’s ability to heal is truly amazing and something that 2011 will always remind me to celebrate.
So many firsts! After I was sick for a while and then started to feel better, life just got so exciting! In the beginning, the firsts are so small. There was the first walk after surgery, the first time output came out of my stoma, the first appliance change. Things progressed from there… there was the first time I got brave enough to eat a peanut, the first try at putting my favorite jeans back on, drinking my first beer. Then there were all the athletic firsts… snowboarding, hiking a 14er, running, climbing. I am still hitting firsts all the time. Yesterday was the first time I climbed a 5.9-rated route at the gym. It was a delicate climb that required more balance than brute muscle power. Still, it was the first time that I felt like I was back in my old climbing body, doing some of the more athletic climbing movements that I used to. What a way to end 2011!
A new outlook. I write often about how being sick and going through major surgery has changed the way I view things. This has been one of the biggest blessings of 2011. I find examples of this new outlook in even the smallest moments of my life. For instance, a few months ago I was getting ready to lead a campfire program at work. It had been a long week and I was feeling tired and “grumbly” and not into it. Suddenly I remembered how much I missed my job last year and how much I longed to be out in the parks leading programs again. I immediately changed my attitude, got excited about the program and fully seized the moment. I got up on stage and shared information about all the amazing changes animals were going through to prepare for winter. I told stories, sang goofy songs with the kids and had one of the best programs ever. On the drive home I was overcome with emotion because it had felt so good to be out there again doing what I love. Life had given me back all I had ever hoped for and here I had been sulking just a few hours earlier. It was a big reminder to live with a spirit of thankfulness for what I had. Gratefulness, the ability to live more in the moment, the capacity to deal with uncertainty and change– these are just some of the ways I have changed for the better I have made in 2011.
As soon as I am done with this post, I am going to go for a run. I love the thinking-time running gives me, and inevitably, I always start composing blog entries in my head. I am sure as my feet hit the pavement and my thoughts drift off, I will think of hundreds of other things I could have included in this post. Suffice it to say that it has been an incredible year of recovery, growth and change. I am so excited to see what the next year will bring!
One of the questions I see posted on forums often revolves around the ability to drink alcohol with an ostomy. Though every ostomate is different in what they can tolerate, I thought I would share my experiences. Now I will say straightaway that I am not a big drinker. Months can go by where I don’t drink at all. I even sometimes have beers in the fridge that reach their expiration date. Crazy, I know. However, even though I don’t drink that often, there is nothing like cracking open a cold beer after doing a successful climb, relaxing with a brew at a baseball game or enjoying libations at a special occasion.
Enjoying drinks with friends is something I hoped I could still do after surgery, and I am happy to report that I have no problems drinking wine, beer, or other alcoholic beverages with my ileostomy. Here are a few of the things I notice:
If I drink on an empty stomach, I get pure liquid output that rushes through my system, and I can get dehydrated. I make sure to always eat a meal when I drink alcohol. When I do eat food with the alcohol, my output isn’t affected at all.
Even when things don’t rush through, I notice that alcohol still dehydrates me. Therefore, I make sure to drink a lot of water. Last night, I had two drinks and drank two 12 oz glasses of water with each one.
I can drink wine, beer (as long as it is gluten-free due to being gluten intolerant) and any other alcoholic beverages. I notice no appreciable differences in the way they affect my stomach or output.
Some people find that carbonated beverages like beer can cause gas which makes their pouch puff up. I have not found this to be the case and notice no difference from the normal “poofing” I get everyday.
The effects of alcohol seem more pronounced now that I have an ileostomy. I am very careful to assess my transportation options before I drink any alcohol.
Last night there was much reason to celebrate. My friend, Sarah, had passed her prelims and is now a Ph.D. candidate for her Graduate Degree Program in Ecology. Her final next step will be to complete her doctoral dissertation on the research she is doing on elephants in Africa. She even started an organization to help the Tanzanian people form a personal connection with the wildlife in nearby Ruaha National Park in hopes that it will lead to a local ethic of conservation. Sarah is a super inspirational person, and had worked so hard to reach this milestone. Celebrating over margaritas and beer was most definitely in order.
I often write about how meaningful the small things in life feel after being sick. It felt so good to be sitting there in the bar last night, laughing and enjoying drinks with my friends, basking in the camaraderie and hearing stories of hard tests and accomplishments reached. I looked around and saw everyone at the booths and tables around me smiling and having a fun time. It was one of many moments this year when I had the profound sense that everything is wonderfully normal and good in my life again.
Friendship can be such an intangible thing. It is the warmth that surrounds you when someone you care about is around. It is the spark that ignites when you realize you have things in common with another. Friendship is the security of confiding in someone you trust or the comfort in knowing a person is always there for you. When I was in the hospital sick and at home recovering from surgery, I felt friendship everywhere:
It lived in the cards and flowers that filled my room and the funny pictures my friends drew me.
It was found in a visit from a friend who, after getting a desperate email from me the day I found out I might be facing surgery, drove across town on her lunch break to show me her ostomy. It was also in her long and thoughtful responses to several more frantic emails in the ensuing weeks.
It waited in a care package of chocolate and other goodies sent across the country from friends I had worked with long ago and hadn’t seen for years.
Friendship resided in the emails that poured into my inbox. Many of these messages were never returned because I was so exhausted. That didn’t matter; my friends just kept sending more.
It was found in the conversations I had with friends who called to cheer me up, or left in voice mail messages when I couldn’t answer the phone because: A) I was sleeping, B) I was talking to a doctor or nurse, C) I was in the bathroom, or D) I was sleeping some more. (Ditto on the statement above about not always returning those messages, and double ditto on my friends leaving more anyway.)
It sat in the stack of People and US Weekly magazines a friend brought me so I could laugh at the ridiculous stories and focus less on being sick.
It demonstrated itself in the bravery of my friend, who is a world-class germaphobe and hates to even touch doorknobs, taking a trip the eighth floor of the hospital to see me. Twice. And she even ate dinner with me in the common area in my hospital wing on one such visit.
Friendship existed in the moments when my friends understood that I was too tired to see them at all.
So yes, friendship might be intangible, but my friends made sure there were tangible signs of it everywhere to help me make it through the hard times. I am so incredibly thankful for my friends… they mean more to me than my sometimes-quiet nature would ever reveal. I don’t think I could have made it through all this without them.
Purposely missing from this post is a mention of the friends who I may not have met in person, but have developed lasting friendships with online. Stay tuned…