Tag: hydration with an ostomy

A stone is cast!

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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.

Pain relief at last.
Pain relief at last.

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.

The stone! No wonder it hurt so much.
The stone! No wonder it hurt so much.

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!

Mt. Rainier next summer!

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I have a brand new goal to work toward for next summer: a climb of Mt. Rainier (14,411 feet) in Washington’s Cascade Range. Ever since Doug and I backpacked on the lower forested flanks of Mt. Rainier on the Wonderland Trail when we were in college, I have wanted to try the peak. Doug and I had talked of doing it a couple years ago with his Dad, but my illness and surgery delayed those plans. I am ready to dust off this dream, and the three of us will finally give it a go.

A painting of Rainier that I did in 2003. Can’t wait for my adventure there next summer! Copyright 2003 Heidi Skiba.

Though Doug and I rock climb a lot, we do not have experience on peaks with large glaciers (and Rainier is the most heavily glaciated mountain in the Lower 48). We know it would be too dangerous to try Rainier on our own. Therefore, we will be doing the ascent with a guide service, International Mountain Guides (IMG).  This company leads mountaineering trips all over the world and has some of the best guides in the business.

As it turns out, one of the owners of IMG, Phil Ershler, has Crohn’s disease. He and his wife, Susan Ershler, wrote the book Together on Top of the World. The book describes Phil’s challenges with Crohn’s disease and colon cancer and tells the story of the couple’s journey to climb the highest peak on each of the seven continents despite these odds. I went to see Phil and Susan speak in-person in Boulder shortly after they released their book in 2007. This was roughly a year after I had been officially diagnosed with ulcerative colitis, and  I was scared  of what my recent diagnosis might mean to my outdoor adventure-filled life. Their words gave me much hope. I read their amazing book shortly after hearing them speak and was further inspired.

As we started to research our climb with IMG, I emailed Phil to find out if he felt that any of the Rainier trips were feasible with my ostomy. The last thing I wanted to do was get excited about a trip only to find out I might be denied due to my medical condition. I was candid about the extra challenges I now face after ileostomy surgery, but Phil was very encouraging and suggested the route he thought might work out the best. He also warned me that Rainier trips fill very quickly and to get our application in as soon as the 2013 dates were published.

He wasn’t kidding. We knew the trip dates would be published while we were on our climbing road trip, so we were driving into town from our camp every other day to find a place to connect to the internet and check. Turns out the dates were published on the one day we didn’t get to town. By the time we checked the following day, there was only one trip left with three openings during the month-long window of time we wanted.  Thankfully we secured our spots!

Before being officially accepted on the climb, the guide service emailed me with more specifics on the route so that I knew what I was likely to face on the mountain. Among several challenges, the ascent to high camp involves carrying a 40-pound pack for five miles with 5,000 feet of elevation gain.  The final day of the route includes a five- to six-hour ascent to the summit and then a descent all the way to the trailhead. This means a round-trip travel time for that day of up to 16 hours. I had been very open on my application paperwork about my ostomy and the challenges it can present (such as dehydration and my limitations of carrying super heavy loads). The staff  wanted to make sure the conditions of the climb seemed doable to me. IMG was super accommodating and helpful about it all and explained some steps I could take to help meet my hydration and pack-weight needs within the confines of the trip. They were even set up to deal with my gluten-free diet.

After carrying a 40- to 55-pound backpack on several trips since surgery, I was sure that I could handle the load on this climb–especially with time for additional training. Just as I carried extra water on some long all-day climbs this summer, so I would on Rainier. I already had a lot of experience swapping out my ostomy pouches in frigid temperatures and with a harness on. I had no concerns about that part of things. I was sure the climb was within my abilities, but I also had to get signed forms from my regular doctor and surgeon stating that they approved of my participation. After outlining the specifics of the trip to them, neither had any reservations about me taking part in the climb. I was set to go!

It is just starting to settle in that I am actually going to be attempting Rainier. I can’t describe the excitement I am feeling for this adventure. The route that was recommended to me is the easiest one that IMG uses on Rainier. It is a three-and-a-half day trip starting at a beautiful place called Paradise (5,400 feet). We will carry our loads to Camp Muir (10,080 feet) and then move on to a higher camp at the Ingraham Glacier the following day. On the final day of the trip, we will attempt the summit (conditions permitting) and descend to the trailhead. Pack weights are less on this route than most others because some group gear is kept at the already-established camps.

I have to admit that I was really drawn to do one of the longer or more remote Rainier trips described on IMG’s site like the Emmons Glacier climb or even a six-day seminar that includes a lot of technical skill instruction plus an ascent of the peak. In my mind, I am still the woman who has gone on several 30-day backpacking and mountaineering trips into the remote wilderness carrying 75 pounds of gear on my back, but I have to acknowledge that my body has changed since then. I am still learning what it is capable of after surgery and this trip will be a perfect test. I am fully confident that it will be strong enough for this route, and after that, who knows? Maybe I will want to do a longer or more difficult trip on Rainier or another peak down the line. Right now, I am ecstatic to have the chance to take part in this climb.

Let the training begin!

My first post-surgery multi-pitch climb: my imaginings turn into reality (feat. new video)

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In the weeks after making my decision to have a permanent ileostomy, my imaginings of what life was going to be like after surgery played in my head like little movies. There was the one that featured me happily leading hikes with my ostomy at work, and another in which I pictured myself successfully emptying my appliance on backpacking trips. However, the one that I liked to imagine the most involved being on a long multi-pitch climb.

There I was in my mind–hundreds of feet up a steep route and anchored into a small ledge with the climbing rope. I would picture myself removing a full pouch, snapping on a new one and then bagging up the old and tossing it in my pack like it was no big deal at all–as if I had been doing it that way my whole life. I would gaze up at the many pitches yet to go and get ready to climb, barely thinking about my ostomy at all.

As I prepared for and recovered from surgery, these visualizations became an important source of hope for me. I really had no idea if the reality would end up exactly that way I pictured it, but having these images in my head gave me a goal to strive for. I really saw no reason I couldn’t do all the things I was envisioning once I healed up.

One by one, in the year and a half since surgery, I turned those images in my mind into  actualities. I jumped right back into work and led hikes and nature programs. I worked my way into backpacking, even going on an eight-day trip 10 months post-op. Snowboarding, swimming, yoga, biking, short climbs–my return to all these sports has been just as amazing as I had pictured they would be. But there was one thing that was still just a series of images in my head:  the multi-pitch climb. Would dealing with my ostomy on a long, hot climb with small belay ledges be as doable as I had imagined? After all, one of the main reasons I chose to have a permanent ileostomy over j-pouch surgery is that I personally felt it would be easier for me to manage on all-day climbs. I was a little nervous about  putting that notion to the test. As I built up strength in the 20 months since surgery, and worked through some hip and shoulder injuries, I continued to wonder what climbing a long route was going to be like with my ostomy.

Last weekend I finally found out as I went with Doug and his brother and dad to climb Devils Tower in Wyoming. We had all climbed this famous rock formation in 1992 and were excited to give it another go. This reunion-style climb with my family was more than I could have ever asked for as my first post-surgery multi-pitch climb. Being back on the rock with all of them was a blessing.

Our gang on the summit of Devils Tower, WY, 20 years ago.
Our same team on the summit in 2012.
We are tired and thirsty, but safely back at the base.

The 15-minute video below highlights our adventure on the Tower. As I watch it myself, I am in awe at how similar the real images are to the little movie that played in my head in the hospital. For climbing and so many other aspects of my life, the things I imagined and hoped for with my ostomy did turn into reality–a truly amazing reality.

No Slowing Down for My Ostomy

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Here are some clues that my schedule has become crazy busy lately:

  • This morning I tried to brush my teeth and put my socks on at the same time. It didn’t go well.
  • Dust bunnies are currently breeding out of control in all corners of my home. I am very glad they are peaceable creatures.
  • The two minutes it took for my oatmeal to cook one morning this week sounded like the perfect time to squeeze in some blogging.
  • I’ve seriously thought about putting on my running shoes while doing errands and chores to see if I can cut my time or get a personal best. I can fold a basket of laundry and put it away in five minutes. I am going for three.
  • I ate spaghetti with sauce from a jar for dinner three times this week.

It is hard not to over-schedule when I am feeling well. Everything sounds fun, and before I know it, I have filled my days with so many activities that I barely have time to sleep. I am still having hip pain, but it has lessened some. My orthopedist can’t find any cause other than a slightly deep hip socket joint that may be causing my bones to rub a bit. Regardless, he thinks it is something I will just have to live with. I can do that. My physical therapist is also working with me on hip alignment issues that could also be part of the problem. The good thing is that both of these individuals think it is fine to run and hike. Despite things hurting a little bit, I am thrilled to be out moving again and I am taking full advantage of every opportunity that presents itself. Doug and I have already gone on two three-day backpacking trips this month, and our summer is only getting started. Breed away dust bunnies… I am going to be ignoring you for a while.

Doug and I on top of Mt. Massive on our second backpacking trip of the season.

I remember wondering if I would ever be able have crazy hectic marathon-like days with an ostomy. Would I be able to manage it in a tight schedule? What about having enough time to empty? Could I eat at any hour of the day? This week was my busiest since surgery, and I am happy to report that insanely full days are completely possible with an ostomy.

On Saturday, I got up at 5 a.m. to go to City Park in Denver to run the Undy 5000. This is a run sponsored by the Colon Cancer Alliance. Proceeds from the race go to pay for colon cancer screenings for the underserved. We have been in the middle of a record heat wave in Colorado, and the high temperature for race day was 103 degrees. I tanked up on water, said hi to some of the people from my local ostomy association who were volunteering at the event, and headed for the start line. The heat was oppressive and I got nauseated during the run despite staying well hydrated. It was definitely not the day to push it, so I enjoyed a more leisurely pace and finished the run in roughly 31 minutes. Even with the heat, my ostomy appliance stuck fine. I indulged in some post-race treats and beverages, perused the booths and then headed home to take a shower and get on to the next activity of the day: a 9+ hour work day.

Showing off my undies in front of the inflatable colon at the Colon Cancer Alliance’s annual Denver Undy 5000.
Sporting my ostomy t-shirt from thegreatbowelmovement.org at the start line for the run.
Everyone gets in the spirit of the Undy 5000 by running in their underwear or other fun bum-related costumes.

Soon I was up in the foothills leading a Jr. Ranger event at one of the parks in the Open Space System where I work as a naturalist. I spent the next 4 hours in 90-degree heat running through a meadow helping youngsters catch insects and teaching about the amazing diversity of bug life in the park. After a quick sandwich-dinner and a practice music session with my coworkers, I told stories and played my guitar as part of an evening sing-a-long and storytelling program for the campers. When we finally packed everything up to head back to the trailhead, it was almost 10 p.m. I had gone full blast from roughly 5 a.m. until 10 p.m. and my ostomy did not slow me down one bit. The only thing that was challenging was staying hydrated, but I had brought a huge personal water container along to the park since there was no potable water there. I drank over 8 liters of water that day.

The next morning Doug and I were up early to head to a friend’s going away pool party. We swam for several hours in the morning and then had a delicious BBQ in the afternoon with burgers, brats and corn on the cob. (I am fortunate in that my ostomy tolerates possible problem foods well when I eat them in conservative amounts, chew a lot and drink plenty of water.) Later that evening we headed back to the pool. I had never been in the water for such a large percentage of a day since having surgery, but my wafer did just fine—even with numerous trips down the water slide and many cannonball jumps.

Doing laps on the water slide at my friend’s pool party.

The crazy week continued. Monday included a doctor’s appointment and an evening dinner with Doug’s parents. Tuesday was filled with work and then my local ostomy association meeting in the evening. I collapsed in bed at 11 p.m. only to get up at 4:30 a.m. for our local Bike to Work Day. It was another scorcher, but the temps weren’t too bad so early in the morning. I rode my bike 7 miles from my house into Golden, and then continued for another 6.5 miles up into the foothills to the park where I work. That part of the ride included 1,900 feet of elevation gain. That evening, I rode back home, ate dinner and went right to bed.

Arriving at my destination after 1,900’ feet of elevation gain during our local Bike to Work Day. My amazing coworkers left encouraging messages for me along my route.

As I type this, I am on the plane traveling to visit my parents for several days in Washington state. This wasn’t the aircraft Doug and I were scheduled to be on (and we certainly weren’t supposed to be in the first class section where we now sit). Our plane left Denver an hour late and we missed our connection to Seattle which also meant we missed the last flight to the small town of Walla Walla where Mom and Dad live. Suddenly life became a bit spontaneous as we had to completely rearrange our plans. The airline put us in first class for our next flight, gave us meal vouchers and are covering our lodging in Seattle until we can catch another flight to eastern Washington in the morning.

Through all these unexpected twists, I hardly even thought of my ostomy. My main curiosity was how my very first trip through airport security since surgery would be. I was fully expecting to have to say something about my ostomy to the TSA personnel. However, I didn’t mention it and went through the metal detector uneventfully like everyone else. I did get asked to run my baggage through the scanner again, but only because I failed to realize that I was supposed to remove my laptop from my luggage. Security didn’t even ask me about the scissors in my ostomy changing kit in my carry-on (which are allowed according to TSA because the blade is under 4 inches long). We shall see if Seattle airport security goes as smoothly with my ostomy.

Blogging while enjoying the surprise first-class seat assignment on the plane.

As soon as I get back home, I have four evenings after work to unpack from this trip and get my things ready for the next adventure: The Crohn’s and Colitis Foundation of America’s Camp Oasis where I will be volunteering for a week as a camp counselor for children ages 7-13.

Through all these activities, my ostomy has faded into the background. I change my appliance twice a week, empty when I need to, eat when it fits in (many times as late as 9 p.m.), and drink a lot of water in the heat. Other than that, I can honestly say I don’t think about it a whole lot and it is not an inconvenience in my life. The longer I have my ostomy, the more I realize how normal everything feels with it– even during the busiest of times and when dealing with last minute changes in plans.

As great as it has been doing so many fun things this month, I know I can’t keep this pace up indefinitely. The dust bunnies will start to haunt me, a personal best at the time it takes to clean the shower will suddenly not sound so cool, and I will want to pull a cookbook off the shelf and actually make something decent for dinner. I am craving lawn chair time with an iced tea and good book instead of a huge “to do” list of things to pack for the next race, bike ride or outdoor trip. My ostomy hasn’t slowed me down one bit, but I think it is time to put the brakes on myself. Well… after the climbing trip we just scheduled for the end of the month that is.

A Case of 14er Fever Requires a Lot of Water (feat. new video)

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On a three-day backpacking trip this past weekend, my husband and I finished our fifth and sixth 14ers  (a peak above 14,000 feet) since the beginning of July. Most summers before this, I was lucky if I did one or two. I have definitely caught the 14er fever. Hiking these peaks has provided me with the perfect opportunity to get outdoors and challenge myself physically while still babying my abdominal muscles. Indoors, I do a battery of  physical therapy exercises that safely strengthen my core. In concert, these two activities will prepare me for the more rigorous demands of technical rock climbing in the future.

While hiking these peaks, I have been amazed at how quickly I am progressing and getting my strength back. While I walked the first one at a turtle’s pace, I am now hiking the peaks briskly and with little fatigue. All these successful peak hikes have also made me realize how well I have adapted to my ileostomy. Managing my appliance on the trail using both closed-end and drainable pouches has become second-nature. Moreover, changing my wafer outdoors, which is one of the things I was most fearful of, has proved to be very similar to doing it indoors except that I must pack out the trash (and the views while changing are more spectacular).

However, one aspect of my ileostomy that still baffles me is figuring out how much water to drink. One function of the colon is to absorb water. When it is removed, the small intestine is able to adapt and take on some of this role, but not as well. Because of this, ileostomates must drink more water to avoid dehydration. It has not been unusual for me to drink 8+ quarts of water on some of my all-day hikes. Up to this trip, I have not had any issues with dehydration. However, conditions were different on this excursion. The temperatures while making the strenuous uphill hike to camp were in the 80s which is warm for the elevation we were at. Despite drinking almost 3 quarts of water (some of which included a sport drink mix) and eating plenty of snacks along the way, I got to camp with a headache and bad nausea. Before we proceeded to empty our backpacks and set up our tent, I sat in the shade and drank some more fluids. In about an hour, I felt better. I upped my water intake over the next two days and did not run into the problem again.

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