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A team of innovation fellows at the Center of Device Development at Northwestern University is looking for people with ostomies to help with their project. Please see the details below. Their contact information can be found in the survey.
My name is Joan, and I am an innovation fellow at the Center for Device Development at Northwestern University in Chicago, IL. I am a part of a mission to improve the management of ostomies, especially when ostomates are beginning their transition after surgery. My team here is a group of physicians and engineers all eager to solve problems ostomates face, and our hope is to create a truly innovative product that ultimately tackles the biggest issues. (You can check our program and team here: http://cd2.northwestern.edu/innovation-fellowship/fellows)
We have NO current connections with any major ostomy supply companies in the industry; we are only tied to Northwestern University. However, while one of the goals of our academic program is education of innovation in medicine, we fully intend to create a product that people would actually want and one that can potentially be brought to the market. Your feedback is invaluable and we look forward to your help! As a token of our appreciation for continued participation and feedback, we will be offering monetary compensation to show our gratitude. We would like to begin these engagements starting next week. If you are available for Monday Dec 9, please let us know your availability and if you are local to the Chicago area to meet in person, or if you can communicate with us via video conferencing (i.e. Skype) or by telephone. Additionally, please complete this 5-minute survey so we can get to know a little bit about you: https://docs.google.com/forms/d/1TIEoIxIDaa5rNN1sYdR7hlUzmdT53pqTe4YmmiaqVZY/viewform.
Thank you again and we look forward to hearing from you soon!
Joan & the CD2 team (Whit, Adam & Rachel)
Some of you may already know from my Facebook page that I recently experienced a kidney stone. I am sharing a few more details about the experience here on the blog as dehydration is one of the challenges of having an ileostomy and is something that can contribute to stone formation.
On Sunday, November 3rd, the NOAA forecast called for gorgeous weather. Doug and I had planned to head to the local crag for some climbing. Instead I woke up at 4:30 a.m. with a strange pain in my groin area. Doug heard me stirring, but since the pain was pretty minor, I told him to go back to sleep while I got up to make myself some tea and take a warm shower. Perhaps that would help it go away. I figured maybe I had just pulled a deep muscle, as I had gone for a pretty hard run the evening prior.
When I was in the shower, the pain started to get worse and it was strange because it felt like I already had to urinate again even though I had just gone when I got up. Great, I thought. I bet I am dealing with a urinary tract infection. I noted in my head that if things didn’t get better, I would schedule an appointment to see the doctor when the weekend was over.
After I got out of the shower, I sat down to go to the bathroom and suddenly felt an extremely sharp pain explode in my left flank. I knew right away that I was probably dealing with a kidney stone. I had had one 14 years ago and the pain was reminiscent of that experience. I also knew that this would likely require a trip to the ER. I started to make my way around the house to gather my insurance card, clothes, spare ostomy supply kit and other things I might need. I got about two minutes into that endeavor before I was brought to my knees by an even more intense pain. I crawled up the stairs and yelled for Doug to wake up and help me.
Seasoned from the days when I would wake up screaming from Remicade-induced joint pain or the times when I needed to be taken to the hospital late at night for UC flares, Doug sprang out of bed and into action at top speed as if he had rehearsed it 100 times. He helped me get dressed and he held my hair back when I began to vomit from the pain. I am not sure how I managed to walk on two feet out to the car, but soon we were zooming down the road to the hospital. Curled up in the front seat, I tried to use the mindfullness meditation techniques I had learned after surgery, and I attempted to focus on each breath instead of the waves of pain and nausea I was experiencing. When we got to the ER, Doug ran in to get a wheelchair while I waited doubled-over next to the car. A nurse heading in to start her shift rushed over to help. Within minutes, I was lying in a bed hooked up to an IV with some much needed Dilaudid.
During my eight hours in the ER, the pain was so intense that I still hurt a lot even with the pain medication. The doctor decided to order a CT scan to see how big the stone was. Fortunately, it was 4mm: a size that I could likely pass on my own. However, I still couldn’t be released from the hospital until the stone moved to a place that was a bit less painful. I was sent home when I could finally hold down some Vicodin pills without throwing up. Before leaving, I was told the the CT scan also showed two more 4mm stones–one in each kidney. They couldn’t tell me if, or when, those would decide to make their way down the ureters.
When I got back to our house, Doug made me endless cups of herbal tea and I watched at least two tear-jerker dramas on Netflix which is one of my tried and true methods of feeling better. Every time I would get up to urinate, I would eagerly look in my strainer to see if the stone had passed. Finally, first thing the next morning, it popped out. I was so happy to see that little rock. It reminded me of a precious nugget in a gold pan! Once the stone passed, I had instant relief and was back to running and hiking within a couple of days.
My stone was sent to the lab to be analyzed later that week and I discovered it was the common calcium oxalate variety. I was given a sheet with recommendations for fluid intake and also a list of high-oxalate foods to avoid. Unfortunately, these foods are currently things that make up a larger portion of my diet: spinach, nuts, peanut butter, quinoa, legumes, oatmeal, berries, almond flour (which is a gluten-free baking staple) and chocolate. These are all things I eat a lot because I love them and I thought they were also good for me (well … except for the chocolate). Another thing I am supposed to avoid is salt. This is hard because when I exclude salt from my diet, I start to feel dizzy, weak and nauseated. Due to this and the fact that my blood pressure has gotten very low at times, my doctor recommended last year that I increase my sodium intake–especially when I am active. I feel that an appointment with a dietician may be in order to find out how to best manage having both an ileostomy and a predisposition to kidney stones.
While I wait for an upcoming follow-up appointment, I have been doing a little bit of research on kidney stones for a better understanding. I read that those with IBD and/or ileostomies can be prone to kidney stones due to the way these conditions affect urine volume, urine pH and calcium and oxalate excretion in the body. Interestingly, the calcium oxalate stone I had 14 years ago occurred at the same time I first developed ulcerative colitis symptoms. I am not sure if this is a mere coincidence, but definitely something to ponder.
The take-home message with all of this is that I need to drink a lot more water. I usually try to take in 3-4 liters in a normal day (more when I am doing something active). However, I also know that I have gotten a bit complacent with my hydration. Other than a few isolated times, I haven’t really felt dehydrated since surgery so I figured I was doing okay with my water intake. There were even a few times that I left my water behind on short runs because I thought I felt fine without it. I also got careless about drinking enough at work, oftentimes returning from leading a program to find the water bottle in my pack still full. I guess rather than giving me subtle signs that I needed more H2O, my body decided to give me a huge wake-up call in the form of a kidney stone. It is a lesson I won’t soon forget. In fact, I think it is time to go have a glass of water right now!
When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary. As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.
When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.
Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.
When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?
Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!
My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.
So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for me.
Happy birthday Wilbur the stoma!
One of the things I love most about blogging is meeting others who have gone through ostomy surgery and are out there overcoming fears, living their dreams and making a difference in the lives of others. I recently had the pleasure of becoming acquainted with such an individual when Bo Parrish emailed me about doing a guest post on the blog. Bo is a semi-professional, nationally sponsored triathlete who shares his story through his website www.conqueryourcomfortzone.com. He is also the recipient of the 2012 Great Comebacks® South Region Award. Bo’s message of embracing change resonates with me and his guest post is a perfect fit for Ostomy Outdoors. Enjoy!
You’re Not Done
By Bo Parrish
Can you imagine a life other than the one you are living right now? Is there something about you that you wish were not so? Does the thought of change excite or terrify you? Well, however you may feel about your current situation I can assure you that it will change! The road that you are currently traveling will indeed change in some way, form or fashion. Life has a funny way of working itself out with or without your liking. My life is a testimony to the incredible blessing that change can and will bring. I wish I could say that I chose it, but it chose me and I am extremely grateful!
I grew up a fairly normal kid in a small town. I never had to deal with adversity until my teenage years. You see, Crohn’s Disease chose me and my life would take a dramatic turn. I spent the better part of the next 14 years in a vicious cycle of stomach pain, fever, weight loss, anemia, bone loss, and social anxiety among others. I was the sick kid, the one who sat on the floor outside of the classroom so that I might make it to the bathroom multiple times throughout the day. I was the one who missed the prom and the parties for fear of not being able to find a bathroom. My entire freshman year of college was spent in the medical clinic while discovering that alcohol absolutely wreaked havoc on my comprised digestive system. Life was miserable and I knew of no other alternative. This continued into my early adult years as I transitioned into the workforce. I was sick more often that well and my employers quickly discovered my lack of productivity. All I could think about was making it through the day to return home to the comfort of my bed. My doctors recommended surgery to removed my diseased bowel, but the thought of a “bag” absolutely horrified me. I told myself that any amount of pain and suffering was better than a body-altering, image-wrecking surgery. As I mentioned before, life has a funny way of working itself out.
In the fall of 2006, I found myself in a rural emergency room in Canada in the hands of general surgeon. My large intestine had ruptured and my body was becoming septic. If I were to continue living, surgery was my ONLY option. I was on the verge of slipping into a coma before giving the doctor consent to operate. The next six weeks were pretty much a blur, but I was alive. My recovery was the farthest thing from comfortable that I can describe. I had a hole in the middle of my body and my midsection had been carved up like a Thanksgiving turkey. BUT….I WAS NOT DONE! Eventually, I started to recover my strength and shortly after my surgery I was introduced to the sport that I credit with my current athletic success. Triathlon gave me confidence; it gave me conviction that my life would be better. In the seven years since my life-saving surgery I have become an endurance athlete and have married my running coach. I have competed in Ironman events all over the world and raced in two world championships. I have learned how to eat and fuel my body for athletic performance. Most importantly I have gained a keen sense of gratitude. It is now my passion to encourage and support others who have recently faced or are anticipating ostomy surgery.
I know it sounds crazy, but life begins with your ostomy. If only I could have known how sweet life could be on the other side of surgery, I would have gladly volunteered. My biggest problem was my attitude. I was sure that my life would be forever ruined by an ostomy. I would never be able to take my shirt off in public. I would never find a woman who would be attracted to me much less get married. I would lose my ability to to be transparent. Oh, how ridiculous I was! Change is such a wonderful thing and in our particular application of an ostomy, it can be the difference in that other life you wish you could live. Life is too short to suffer without hope. Please, please, please don’t allow yourself to become an emergency surgery. Take it from me and my path these last seven years: change is the only thing that is keeping you from living the life of your dreams.
Dennis Frohlich needs your help with a research study! Please see the details below.
I am a graduate student at the University of Florida and also somebody with ulcerative colitis. I maintain the United Colon Vlog (http://UCVlog.com), which you may be familiar with.
For my dissertation, I’m conducting a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers like you use these websites. I’m looking for people 18 or older to complete a short survey about your activity in the online community.
As long as you have Crohn’s disease or ulcerative colitis you are eligible to participate; it doesn’t matter how long you’ve had IBD or how bad your disease is. If your IBD is indeterminate, or you are still going through diagnostic tests, you can still participate! And whether or not you’ve had surgery, you are still eligible.
The survey will take approximately 10-15 minutes. Please click the link below to access the survey. Thanks for your invaluable help!
If you have any questions at all, please let me know.
University of Florida
A few weeks ago, Doug and I climbed an eight-pitch rock formation in Rocky Mountain National Park called Spearhead. It was a great adventure and my first big backcountry rock climb since surgery. All went well but as we summited we noticed some huge thunderheads building above us. We descended and got safely back to camp just as the lightning, hail and rain began. We packed out our soggy gear and hiked the six miles back to the trailhead in a light rain. Little did we know at the time, those sprinkles were the start of a weather system that would last five days and flood parts of the Front Range of Colorado. Sections of the roads we traveled on that evening would be completely wiped out, and homes and businesses that we passed by would be damaged or destroyed.
Doug and I walked around our own neighborhood during the time of heaviest precipitation and watched small creek beds fill and and overflow their banks and turn into swift rivers. Our immediate area was spared the worst of the rains and did not sustain any damage except for some flooded trails and parks. As we watched the disaster unfold only 20 miles to the north and learned of the immense destruction there, we wondered what we could do to help. We put our names on a volunteer list for a large organization, but were told that it would be a month before needs would be completely assessed and our applications processed.
A week after the flood Doug and I made a trip up to Boulder, one of the severely impacted towns, to go to a premiere of a climbing film. It was crazy to see how much flood recovery had already happened. Major roads had been cleared, a lot of businesses had reopened and things looked normal on the surface. However, before the presentation, a group of local climbers got up on stage and talked about all the work that still needed to be done. Right after the flood, these individuals saw that their neighbors were in need and simply showed up with shovels and buckets to dig out impacted homes. Soon they had a name: The Mudslingers. The newly formed community-based volunteer group invited everyone to join in and help make a difference. It was easy—all you had to do was show up at their makeshift office in downtown Boulder and they would assign you to a project.
Word of the Mudslingers spread quickly and soon it became a large group made up of people of all different backgrounds—not just climbers. When we were finally available to volunteer this past weekend, we were afraid that there wouldn’t be that many projects left to help with. After all, it had already been three weeks since the flood.
Of course I thought about my ostomy. Would the lifting be too heavy? What would I do with my full pouches out at a flood site with no restrooms for miles? I hadn’t let my ostomy stop me from anything before and I sure wasn’t going to let it hinder me from volunteering. I would wear my hernia prevention belt and ask for help if a task involved heavy lifting. Certainly I could shovel dirt and that was what was most needed. As far as dealing with my waste, I would just do the same thing I did on a mountain: find a somewhat private spot, swap out a closed-end pouch and pack it out.
We showed up at 8:30 a.m. on Sunday and there were about 20 people gathering on the sidewalk outside the office. After signing liability waivers, we jumped in a car with a couple other volunteers and began driving 30 minutes to the site. On the way there, it was hard to even tell there had been a flood. It was a gorgeous day and cows were grazing in farm fields as we passed. Bicyclists were out in droves enjoying the beautiful weather. I kept watching for flood damage, but I couldn’t really see anything save for some puddles in the fields and some grass that looked like it had been matted down by water. I was starting to wonder what kind of work we would be doing. It seemed like the area wasn’t that heavily impacted. I would soon discover that I couldn’t have been more wrong.
When we got within 10 minutes from our destination, I started to see some low-lying areas where it looked like a lot of mud had been cleaned up from yards and piled up. However, it wasn’t until we came face to face with a “road closed” sign that I had the first inkling of the sheer destruction I was about to witness. The house we would be working on was just beyond this sign, so we drove around it. As we turned into the driveway, we noticed that the main road extended only another 50 feet before ending in an abrupt cliff. It had been completely washed out by the flood. “Road gone” may have been more appropriate wording for the sign.
When we got to the property, I stepped out of the car and looked around in disbelief. The damage was so much worse than I had imagined and my mind had a hard time making sense of the disorder before me. There was a children’s slide up in the branches of a cottonwood and a huge construction dumpster tipped on its side and pushed up against a tree like an empty cardboard box. Across the river an RV sat marooned in silt while a garage had been completely moved off its foundation and stuffed with branches from the force of the water. Jumbled tree limbs, house parts and other random items formed debris piles everywhere. On the property, there were enormous mounds of destroyed belongings: muddy shoes, mattresses, appliances, luggage, packages of unopened chips, a child’s toy, and a crushed TV were just a few of the objects I saw stacked up. Some of the items belonged to the person who lived in the house but many of the things had traveled there from miles upstream. The house had already been dug out by an earlier group of volunteers, but there was still two to three feet of wet silt covering the floor of a barn and a large portion of the yard.
After looking around for a few minutes, we were briefed on the project. Our main objective in the morning would be to clear large debris out of the mud in the yard so that a tractor could come through and scoop up the remaining dirt. There was such an overwhelming amount of deposited silt that it was hard to know where to take the first scoop. We all just started to dig in. Soon we were finding all sorts of things including a bike, golf clubs, a dog crate, fishing poles, a propeller and even a toilet. The most frustrating thing was that a huge number of window frames had washed down from somewhere up stream and were layered in the silt like sheets of paper. We would dig out one only to find another right underneath. We got so excited when we were able to remove one with the panes still intact, but most were broken and trying to remove all the glass from the mud was impossible. Digging through the mud, it was hard not to get emotional. I knew that every object we found contained a story of someone who had been impacted by the disaster.
By lunch we had made some amazing progress. As we sat down to eat, the homeowner, tenant and a neighbor that was also helping with the cleanup came over and told us stories about the flood and its aftermath. The 70-something homeowner now lived in town but rented out the property. She had bought the place in the 1970s and talked about the home’s rich history and all the memories of the time she had lived there. Due to the fact that the home was on a creek that was usually a small trickle, she did not have flood insurance. The homeowner had talked about wanting to give up once she saw the damage because it had been so overwhelming.
The renter who lived in the house had been keeping a close eye on the rising creek only to have a drainage ditch behind the house unexpectedly overflow and quickly inundate the house. He evacuated before things got really bad and thought he would come back to some wet carpeting the next day. Instead he found his house full of deep mud with all his belongings on the first floor and in the barn destroyed. This had been his home for 10 years and he talked about how it was the only place his grandchildren had ever known. It was clear that all the individuals loved this place and that their loss was huge. I couldn’t have imagined going through what they had, and my heart ached for them.
After lunch the crew divided into two teams. One went to dig out the three feet of mud in the barn. The rest of us donned masks and headed into the house to remove insulation and drywall. An earlier group of volunteers had already taken the walls out up to the high water mark soon after the flood, but it was determined that the rest of the drywall up to the ceiling should be taken out. As I was ripping out the walls with the rest of the team, I got really sad. Just a few weeks ago, these were cozy rooms full of someone’s treasured belongings.
As we finished up in the house, I noticed that the walls along the staircase to the second floor were intact and covered with framed family photos. I held my hand in front of my eyes so that I could block out the area we had gutted and just focus on that one little space untouched by the flood. The comfort and tranquility of the upper stairwell stood out against the piles of broken drywall, dirt and bare studs that had become the barren first floor. I closed my eyes and pictured the lower level becoming a comfy home again. I imagined colorful walls and rugs, artwork on the fridge, comfy furniture and laughter filling the now empty space. Though it would take some time to get there, I knew those things would be a reality thanks to all those who had volunteered.
The day came to a close and I wasn’t the only one full of hope. At the end of the day the man who lived in the house smiled as he talked with me about the how the house would be even better than before once repaired. Walking back to the car, tears welled up when I overheard the homeowner talking on the phone about how overjoyed she was at all the progress that had been made during the day. I looked around and things still seemed so daunting. However, in her eyes the improvement was huge—the property she loved was starting to be recognizable again. As we all got in our cars to leave, she invited us to return to see the place once it was rebuilt.
I know from going through serous illness and ostomy surgery how important it is to have hope. I also know that sometimes it gets lost and you need others to help you find it. In this case hope was well hidden in many feet of thick mud and was particularly hard to locate. Still, it had no chance of remaining concealed with 20 hearty, shovel-wielding volunteers working tirelessly at the site. With each piece of drywall torn out and each bucket of dirt removed, hope was unearthed and the despair of these individuals began to turn into optimism. Words can’t describe how amazing it felt to be there for someone in need and to be part of that transformation.
I must admit it. I have been very fortunate when it comes to my ostomy. I have had the best medical team imaginable through my UC and surgery journey. I have a wonderfully constructed stoma that functions perfectly and my wafers never come loose or leak. As of yet, I haven’t had the troubles with foods or blockages that some people with ostomies do. I don’t take any of this for granted and try to live each day with a sense of gratitude over the way things have turned out and for my restored health.
I felt this same level of thankfulness many times on my Rainier climb. I would stop for a few moments, look around in amazement and think I can’t believe I am really here and then close my eyes and give a silent thanks. Leaving the park after the climb was really hard. I didn’t want to let go of all I had experienced on the mountain. As we drove away, I kept wanting to take one last glance at the peak–as if each additional view would somehow help me better process all that being up there had meant or would make the memories more lasting. My ascent of Rainier couldn’t have turned out more perfectly, and it felt as if the stars had aligned for so many aspects of the trip:
My climbing team was amazing
I climbed with the best group of people that anyone could ask for. We had a total of four guides and eight participants in our team. Just by sheer luck of schedules– two of our guides also happened to be doctors and three of the other clients were nurses. Though I didn’t talk about my ostomy a lot on the climb (I had other things to focus on), having teammates with medical knowledge made bringing it up infinitely easier.
Our group met at the guide service headquarters the day before our climb to go over gear and logistics. After the meeting, I stayed back to talk with Emily Johnston, our lead guide, and also an ER doc. I brought up some of the unique challenges my ostomy presented (hydration, having to empty on rest breaks, etc.). She had some experience with patients who had ostomies and was very understanding and matter-of-fact about it. From that point on, I knew there would be no awkwardness when I had an ostomy-related question or needed to deal with it on a rest break.
All four of our guides were amazing and top-notch. One of our guides, Craig John, had made it to the top of Everest. Liam O’Sullivan, another guide and doctor, had set a speed ascent record on Rainier in 2008. Emily, Liam and Craig had also climbed Rainier over 100 times. Our final guide, Jeff Ward, was certified with both the International Federation of Mountain Guides Associations as well as the American Mountain Guides Association and instructed other alpine guides. Suffice it to say that we were in very good hands.
The other climb participants were some of the nicest people I have met. We formed a quick bond and everyone was so encouraging and supportive of each other. I truly hope that someday we will get to meet up in the mountains and climb together again.
The weather cooperated
Day one was sunny and clear blue, but when we woke up on day two, an angry looking lenticular cloud had situated itself over the top of Rainier. Fortunately, we were only practicing glacier travel skills and rope work near our low camp at Camp Muir that morning. After a short hike to the high camp at the Ingraham Flats in the afternoon and an early dinner, a ferocious thunderstorm blew in. Not only were we surrounded by intense lightning–which was fortunately attracted to the higher ridges and not our camp–but three to four inches of fresh graupel (soft hail-like snow pellets that resemble the innards of a bean bag) fell. The forecast didn’t look good for our summit attempt the next morning either, and we went to bed feeling disappointed that we probably weren’t going to make it any higher on the mountain.
Much to our happy surprise, we woke up to our guides’ voices telling us that the skies had cleared! We quickly ate breakfast (at 11:30 p.m.–yes, that’s right, in the middle of the night), got packed up and then tied in with our assigned rope teams. It was slow going with all the fresh deep graupel on the trail which made it feel like we were walking in deep sand. I was second in line, and for every step forward, I slid a half a step back.
The route was also more technical than it usually was at this time of year. Several larger crevasses had opened up, and we had to cross the gaping abysses by walking across extension ladders secured on each end. When I shined my headlamp into one of the voids I could not see the bottom. As we hiked, we could see that the stars were disappearing in the dark sky– more clouds were coming in. We pushed on and reached the top of Rainier at 7:30 a.m. We were only able to bask in our success for maybe ten minutes before it was time to head down. The clouds were looking alarmingly like the ones that had just dumped on us the previous evening. Even in good weather, the technical crevasse sections of the route had a tendency to cause a bottleneck of climbers. Being stuck waiting in an exposed place surrounded by lightning would have been terrifying and dangerous. Though we all would have loved to spend more time on top, we knew it was not worth the risk. As it turned out, the clouds blew over without incident and we ended up having great conditions for our descent.
My ostomy behaved
Two days before I was to leave for my climb, my ostomy acted up for no apparent reason. I had pure liquid output for a while and when I changed my appliance wafer one final time before leaving, I noticed I had numerous ulcers on the surface of my stoma. I had experienced these on many occasions before and even had them biopsied (which only showed non-specific inflammation and not Crohn’s). However, this time there were more ulcers than usual and some of them looked different. Along with he circular ones that I have been getting on the side of my stoma, there were strange elongated amoeba-shaped ulcers on the tip and just barely extending into the inside of my stoma. I thought, Oh no! I don’t need something new to deal with right before heading out on the climb.
I decided not to worry about it. If I had liquid output and had to change my closed end pouches more frequently along the route, so be it. I had also trained with a much heavier pack than I would actually be carrying on the trip. I knew that if I had to bring more water to offset any extra fluid loss, I would be fine with the pack weight.
Luckily, the morning we left the trailhead, my output thickened and my ostomy fell into its usual pattern of having to be emptied every four to six hours. The first day of the climb I was even able to go one stretch of eight hours. When I returned to my lodging after the climb and put on a new wafer, I noticed the ulcers had also started to go away. Whew!
I ran into one of my IBD role models on a rest break
Years ago, Doug did some website work for International Mountain Guides and met with the three guys that ran the company: Eric Simonson, Phil Ershler and George Dunn. When it came time to climb Rainier, we knew we wanted to make the trip with their guide service.
In 2006, when I was first diagnosed with ulcerative colitis, I also found out that Phil Ershler had Crohn’s disease and had recovered from colon cancer. He and his wife Sue had just shared their story in the book Together on Top of the World which chronicled their journey to overcome those challenges and climb the seven summits together. I read the book and went to see them speak at a local climbing shop and was deeply moved. The things that Phil had gone on to do in spite of IBD were truly remarkable. As my disease continued to worsen over the years, Phil’s story remained an inspiration to me.
When we knew we wanted to do our climb with International Mountain Guides, I emailed Phil and asked him his thoughts on doing the climb and what route might work best for me. He gave me some great suggestions and was really encouraging. As luck would have it, we ran into Phil on the way to Camp Muir on day one of our trip. He was descending from a day hike with his wife and a friend and happened to pass by just as we had paused for a rest break. He stopped to chat with our group, and I pulled him aside afterwards to thank him in person for the encouragement and inspiration. I still can’t believe that of all the days on the mountain… and all the people who climb it… and of all the places to take a rest break… we ran into Phil right there that day. Seriously. What are the chances?!
Though there were many fortuitous things on my climb, there were also aspects that were not just a matter of luck:
I trained really hard
The months before my climb were a roller coaster ride of injury and uncertainty. From being diagnosed with steroid-induced avascular necrosis in my shoulder in December to having hip and Achilles tendon problems in the spring– I really thought I might never be able to do the climb. However, I did everything I could to make it happen. I worked diligently with my physical therapist to get to a point where I could at least hike and aqua-run again and then did those activities week after week. If I was tired after work, I still found the motivation necessary to head to the pool. When the alarm went off at 1 a.m. every weekend to hike a big peak, I rolled out of bed and did it. Once on Rainier, this training made the climb so much easier. I still can’t believe how healthy and strong I felt up there; it was everything I had hoped for.
I was willing to ask tough questions
When I filled out my application for the climb last fall, I was very open about my ostomy. I wrote about the challenges it presented and asked for feedback from the staff about how I could handle these things on the climb. No– it wasn’t easy writing to strangers and explaining ostomy waste and my various needs related to it. However, because I was straightforward and honest about my situation, I got some amazingly helpful suggestions and gained insight into how I could adapt to the conditions I would likely encounter on the trip. Once I got up there, I was able to enjoy the climb and not worry about my ostomy because I knew what to expect.
I did not give in to fears
There were a plethora of things to be nervous about in regards to my ostomy on Rainier. Would I be able to stay hydrated on long days when all our water came from snow and could only be obtained at camp? Would it be really hard to swap full pouches on steep slopes in the cold? What about when being roped up on a team? Would my heavy pack be a problem? How much should I tell my fellow team members about my ostomy and when? I knew rest breaks were kept short. Would I have enough time to empty my appliance plus refuel and hydrate?
Instead of getting too worried about any of these things or letting them stop me from going, I equipped myself with as much information as possible to help me prepare for the trip. Beyond that, I wholeheartedly jumped into the unknown and let it play out minute by minute. There were many times that I had no idea where I would swap out a pouch within the next hour or when a conversation with another person might turn to my ostomy. I figured it out as I went along and that is one of the things that made it such a grand adventure.
The video in this post covers some highlights of the trip and conveys the emotions of the climb better than I could ever express in writing. Due to the fast pace of the climb and the fact that we were moving through difficult terrain in roped teams, carrying ice axes and wearing heavy gloves, we weren’t able to record nearly as much footage as we usually do for our films. I plan to do two more written posts in the upcoming weeks covering more details about the Rainier trip: one on the specifics of how I managed my ostomy on the climb and another regarding the sometimes challenging issue of knowing how much information to share with others regarding one’s ostomy.