A big city adventure

Usually when Doug and I head out on vacation, it involves traveling into some remote wilderness or challenging ourselves on rock faces. However, this April, we embarked on a different type of adventure as we made a trip to New York City to visit my brothers. Instead of hiking to backcountry lakes and peaks, we walked to different neighborhoods. From Manahattan’s Greenwich Village to Brooklyn’s DUMBO, we enjoyed taking in the unique character of each place. We also strolled through many of the city’s green spaces including Central Park, Prospect Park and the Highline, and visited the Gugenheim, Museum of Modern Art and the Natural History Museum.

On top of the Rock
On top of the Rock
Central-park-sketching
Sketching in Central Park
Exploring Brooklyn on Citibikes
Exploring Brooklyn on Citibikes

Usually on our wilderness trips, I have questions about routefinding, which layers to wear and whether or not the cloud build-up might lead to a storm.  However, on this vacation my queries were of a different sort–  and some of them became relevant when dealing with my ostomy on the trip:

Do New Yorkers ever get tired of being in small, crowded places?
I marveled over how many people lived in the NYC area and how crowded things were. On the L-train that led to my brothers’ neighborhoods in Brooklyn, I often felt like a pickle in a jar–we were packed into the subway so tightly, yet more and more people would cram in at the next stop. If  you lost your balance when the train came to a fast stop, it didn’t matter because there was no room to fall over.

I also couldn’t believe how tiny some of the restaurants we visited were and how we were often eating shoulder to shoulder with the party at the next table. The restrooms in these little establishments were also itty-bitty compared to the multi-stall bathrooms found in most Colorado restaurants.The square footage of the typical New York apartment is also on the small side making for tight quarters when we were staying with my brothers. I loved having ostomy deodorizer along on the trip so I didn’t have to worry about stinking up these small spaces when emptying or changing my appliance. A dozen drops of Hollister’s M9 drops in my pouch completely eliminated any odor. It is pretty darn cool being able to make your poo not stink on command– something that isn’t an option for those with colons!

How can New Yorkers eat dinner so late on a regular basis?
At home, I often run or go to the gym when I get home from work which sometimes has me eating at 8 p.m. It isn’t a problem for me and I don’t notice a difference in my overnight output schedule whether I eat early or late. Still, in NYC we pushed my eating schedule to the max and we sometimes at dinner as late as 9 or 1o p.m. I wondered at first if this would have me emptying all night. Fortunately it didn’t and most nights I was able to sleep tight until morning. Even if I would have had to get up, the inconvenience would have been totally worth the experience of visiting so many fun bars and dining on everything from tasty Thai food to hearty Italian fare, spicy Mexican dishes and New York pizza (gluten free of course!)

Fabiane's Cafe in Brooklyn had the best gluten-free pastries!
Fabiane’s Cafe in Brooklyn had the best gluten-free pastries!

Where do people with IBD find bathrooms in this town?
In the woods, it is easy to find a bathroom anywhere. If you duck behind a tree and dig a hole you are pretty much set to go. In the suburbs, you can often drive to a fast-food restaurant or gas station and easily use the facilities. In New York City, we were always traveling by foot or subway, and it wasn’t easy to find public bathrooms that weren’t reserved for customers. I drink a lot of water to prevent dehydration with my ostomy and I end up urinating a lot. There were many times I thought my bladder was about to burst when I managed to find a restroom in the nick of time. (Thank you, Trump Tower!) Though BM urgency isn’t as much of an issue with my ostomy because I have a lot of control over when I empty, the lack of public restrooms would be incredibly hard during an IBD flare.

Though thoughts about my ostomy did pop into my head a few times on the trip, the vast majority of the time it was at the back of my mind. I was left to focus on fully enjoying the big city adventure and trying to figure out another perplexing question:  how the heck do women cover such long distances in the city in high heels! I have hiked miles and miles on wilderness trails, yet my feet and legs never get so tired as when I visit New York City. People there walk everywhere. Fast. And often in fashionable footwear that doesn’t look very comfortable. I have no idea how they do it. After five days of walking around the city visiting parks and museums, I could barely lift my legs.

My feet feel happy on our initial day of sightseeing in NYC as brothers and I walk across the Williamsburg Bridge. From there we walked to China Town, Little Italy and eventually Lower Manhattan. After five days of pounding concrete on such adventures, I can barely walk!
My feet feel happy on our initial day of sightseeing in NYC as brothers and I walk across the Williamsburg Bridge. From there we walked to Chinatown, Little Italy and eventually Lower Manhattan. After five days of pounding concrete on such adventures, I can barely walk!
Resting my feet on the rooftop after a long day of sightseeing
Resting my feet on the rooftop after a long day of sightseeing

Doug and I had loads of fun visiting the Big Apple, but after six days there, we were ready to return to the wide open spaces and slower pace of Colorado. In the weeks ahead, we look forward to returning to many of our favorite summertime sports in the wilds.

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A stone is cast!

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!

Two years!

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

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

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

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

Turning 40

I couldn’t stop smiling as I sat in the stands at Coors Field. I was attending a Colorado Rockies game for my 40th birthday, and the evening had been amazing so far. Planning to ride our bikes to the stadium (to avoid traffic and the parking fee), Doug and I had parked our car about a mile away.  Just as we were about to unload our bikes from the roof rack, a massive storm blew in and we watched lighting streak across the Denver skyline as hail pummeled our car. Once the storm ended, we jumped on our bikes and cruised downtown, breathing in the wonderful spring smell of rain-soaked ground and blossoming trees.

We arrived at the stadium an hour early, so we stopped to enjoy drinks at the Irish pub next door. I was halfway done with my Strongbow Cider when the waitress surprised me with a free birthday shot. I have no idea what was in the fruity purple concoction, but she assured me it didn’t have gluten in it, so down the hatch it went. This was a little more than I would normally drink on a mostly empty stomach with my ostomy, but hey, it was my birthday. Time to throw caution to the wind. My stomach wasn’t empty for long. As soon as we walked over to the stadium, I indulged in one of my favorite treats. I hardly ever eat hamburgers due to having celiac disease (and the fact that they are not that healthy), but Coors Field has a special gluten-free concession stand. Soon I was in my seat, huge burger in hand and eagerly anticipating the game.

Nature even provided some pre-game entertainment for my birthday. Perched on the balcony railing above me, a male house finch was singing his heart out. Over and over he belted out his melodious tune, and I kept thinking that there had to be a female baseball-fan-of-a-finch listening somewhere in the stands. I hope he finds her. There are certainly many great places to tuck a nest in the stadium and then the pair can watch every home game as they raise the next generation of Rockies-loving finches.

If this amazing start to my birthday evening wasn’t great enough, things got even better. The Rockies were clobbering the opposing team in one of the best games I had the pleasure of watching. In between watching unbelievable plays, my mind cycled through memories of being at the stadium so many times before.

It was on a previous visit to Coors Field that my final UC flare first made itself known. I am sure many IBDers know the feeling of thinking they have finally found the magic bullet of probiotics, diet and medication to keep their illness in control, only to have their body fail them yet again. It was during a night similar to this one that I was having fun watching the Rockies when one such disappointing moment came. I got up to use the restroom during the 7th inning stretch and noticed a tiny speck of blood from my intestines on the toilet paper. My heart sank. I left the bathroom and tried to focus on the rest of the game, but all I could think about was the fact that my four-month remission was over and my UC was back. At the time, I had no idea that those initial specks of blood would turn into the massive flare that would cost me my colon. When I look back at my photos from that evening, I see a woman who is blissfully unaware of the major life change that is about to happen. If you would have told me that night that I would have an ostomy a few months later, I would have said you were out of your mind.

Sitting in the stadium on my 40th birthday, I realized that I still had no idea what was around the corner. But if there is one thing I have learned in my 39th year, it is that this uncertainty is okay. Tomorrow would be on its way soon enough, but right now I was enjoying watching the players slide into bases and hearing Doug yell GO TODD at the top of his lungs every time Todd Helton was up to bat. Right now I was having fun singing Take Me out to the Ball Game and seeing the people around me laughing and goofing around with their friends and family. Right now I was smiling as I blew out the candle in my birthday cupcake and made my wish for the year. Right now I was happy that my ostomy had allowed me all these moments.

For me, turning 40 wasn’t something to be sad about. It wasn’t about all the things that I hadn’t done or about goals not yet achieved. Turning 40 was about celebrating all the things I had done. It was about lightning and skyscrapers, house finches on balconies, bike rides through puddles, baseball players getting out of pickles and every other great memory I have from that day and all of those before.

Cheers! Alcohol and the ostomy

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.

Amanda, Sarah and I celebrating after Sarah aced her Ph.D. prelims.

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.

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

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.

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

Packing for a trip: could GORP come along? (feat. new video)

It is crazy what goes through your mind before surgery. Of course, I was worried about all the big things like how painful surgery would be, and how well my stoma would function, and if I would have any complications. But many times, other goofy little worries would pop into my head that should not have been on my radar screen. One of those was whether or not I would be able to eat GORP.

GORP, or good old raisins and peanuts, was a staple of my wilderness diet. I would create all sorts of great mixes with dried fruit, nuts and a variety of chocolates and candies. Yet nuts and raisins are both on the list of foods to be cautious with when you have an ileostomy. I feared that I would never be able to take one of my favorite treats into the wilderness again.

Continue reading “Packing for a trip: could GORP come along? (feat. new video)”