Wilbur the stoma gets a biopsy

On Friday I was having some major déjà vu. However, it wasn’t all in my head. I actually was in a place that I had been before: the outpatient surgery pre-op area of the hospital where I had the colonoscopy that led to me being admitted for a 16-day stay for my final severe UC flare in the autumn of 2010. Except for the fact that I wasn’t feeling sick and hadn’t just been through the worst bowel prep of my life, it felt crazily familiar. The same nurse that had checked me in for that colonoscopy over two years ago checked me in on Friday. He even recognized me! That said, that is where the similarities of the visit ended. Unlike last time, I wasn’t in the outpatient surgery area for anything serious and didn’t even need an IV. I was simply there to have Wilbur, my stoma, biopsied.

In March I wrote about some ulcers on my stoma. After an appointment where I brought some stoma photos showing what had been going on, my IBD nurse prescribed a couple of months of Pentasa to try. Since then, we have been patiently waiting for some ulcers to show up so that they could be biopsied to better determine if I was actually dealing with active IBD. It seemed like every time I would get an ulcer, I couldn’t get in for a biopsy because it was the weekend, I was out-of-town, the ulcers would heal too quickly, or my doctor was not available.

Finally, the perfect chance presented itself. Last Thursday night, I was changing my appliance and spotted a big ulcer that had appeared during the day. The next morning I emailed my IBD nurse and she put things in motion to see if my doctor could squeeze me in for a biopsy. However, my doctor wasn’t working in the GI office that day; she was working at the hospital so I would have to see her there. Within a few hours, everything was set up and I drove from work to the hospital, checked in and was soon on a stretcher in a gown reminiscing about how sick I had been last time I was in that situation.

Once things were ready, I was wheeled down to the room where they do colonoscopies and there I saw my GI doctor for the first time since my UC flare 2.5 years ago. I think my GI doctor is one of the greatest, nicest physicians ever, and I was truly happy to see her again under much better health. We caught up for a bit and talked about the biopsy. She explained the procedure and said she would be using the same tool to remove tissue that she did for intestinal biopsies during routine colonoscopies.

I didn’t even have to take off my wafer. We simply snapped off my pouch, cleaned off the stoma a bit and were set to go. My doctor pinched off a half-dozen tissue samples from my stoma with the tool, including the area of the ulcer. We chatted as she worked and she laughed saying how strange it was to be talking to someone while doing an intestinal biopsy because usually the patients are under sedation. It is pretty handy that stomas have no nerve endings. My stoma bled a little when she plucked off the samples, but the whole procedure was pretty uneventful.

My stoma was completely cooperative and the whole process was mess free until the very end. When the nurse had removed my pouch, she sat it on the table. When we were done, she handed it to me to put back on. It was a fresh pouch from that morning, and I had emptied it before heading to the hospital so it was fairly clean, but there was a bit of output in it from the drive and checking in to pre-op. I had fully intended to put on a clean pouch on after the biopsy and had brought with me.  However, when the nurse handed me the  one we had removed I thought Oh… maybe I can just re-use this since it is fairly clean. Big mistake. Trying to put on the half-full pouch while in a reclined position didn’t go so well and I ended up spilling a small amount of output on my belly. It was a little embarrassing, but the doctor and nurses helped me clean up and were so nice about it that it seemed like no big deal at all. I tossed the old pouch, put on a totally clean one and was good to go.

In the days since the biopsy, Wilbur has started to look like he was attacked by a vicious woodpecker. There are small, circular, ulcer-like depressions in every spot where tissue samples were removed. Though the sores are scary to look at, they should heal in a couple of weeks.

On Tuesday I got the results of the biopsy. It showed non-specific inflammation, but no signs of Crohn’s disease or ischemia (lack of blood flow to tissue). We will keep an eye on things for any changes, but the doctor said that such inflammation could be caused by something as basic as mild surface irritation from my pouch.

It is a relief to know that these ulcers are likely harmless and it feels great to have this and so many other concerns resolved as I head into summer. My shoulder avascular necrosis is feeling great with physical therapy, my hip pain appears to be caused by something pretty benign, and my recent Achilles tendon heel tweak hasn’t been hurting when doing my Rainier training hikes. It definitely feels like the dark cloud that has been hovering over me all winter is finally dissipating. I am really hoping that the sunshine sticks around for a while!

Back in the wilds!

Heart pounding, quads burning and lungs barely able to keep up — I could not believe I was standing at 13,000 feet again. Yet there I was! Doug and I spent the weekend in Breckenridge with his parents. Our rental was a mere two miles from the Quandary Peak trailhead, so yesterday we decided to head up the trail to see how far we could get.

Doug and I take a break along the Quandary Peak trail.
Doug and I take a break along the Quandary Peak trail.

I had no intentions of making the summit, and just wanted to be out in the mountains moving my body again. With the sudden onset of groin pain in mid-January and an MRI in February that showed gluteal tendinosis in my hip, I had been doing lots of physical therapy and taking a break from hiking. In fact, I was starting to think that my Rainier attempt in July might not happen. I tried to keep my fitness up with biking and swimming (doggie paddling really… I cannot do any overhead swimming strokes because it hurts my shoulder avascular necrosis (AVN) too much). However, those activities hardly replicated the intensity of climbing big peaks with heavy gear at altitude.

Fortunately, last week I got some good news at a much-anticipated appointment with a new orthopedic surgeon. After looking at my MRI, he didn’t see anything in my hip except for the gluteal tendinosis. However, he does not think that the tendinosis is causing the groin pain I have been experiencing because that type of injury typically causes outer hip soreness. This makes sense as the physical therapy I have been doing for the last two months has really helped some of the pain in the outside of my hip, but did little for the groin. The bottom line is that the doctor did not know what was causing the soreness in that part of  my hip; the joint looks healthy. He said sometimes they really can’t find anything and oftentimes these issues resolve on their own with time. He thought it was fine to start training for Rainier again as long as the pain didn’t worsen.

I also talked to him a lot about my shoulder AVN. Though I really liked working with the doctor that diagnosed the condition back in December, this particular orthopedic surgeon has more experience working with patients who have AVN. After looking at my MRI, he felt the AVN in my shoulder may not cause me any further issues. He said the necrotic area is small and that most of the cases he has dealt with have involved a much larger percentage of the humeral head. As a result, it is quite possible that I won’t ever need a joint replacement. Of course, he did say the exact progression is impossible to predict. The doctor said I was really, really lucky that I have not developed AVN in my hip. He has never had a patient that had it in the shoulder that did not also have it in the hip. (Could I be this lucky?!) Though he said it is always possible to develop AVN in another joint at any time down the line, the more time that passes after taking steroids, the better the chance is that this won’t happen. He mentioned that there are a lot of factors at play with steroid-induced AVN that doctors don’t understand. For instance, the window of time for developing AVN after stopping steroids appears to be a lot longer for some people and with some diseases than others.

It was a huge relief leaving the doctor’s office knowing that I had just been given the okay to get back to all my activities. And with my shoulder also feeling so much better, I happily started planning all my new adventures.

Unfortunately, my body wasn’t quite ready to cooperate. The morning after my appointment, I was bending over to pick something up off the floor and I felt a pull in my Achilles tendon. I was so disappointed. I had waited so long for that appointment with the new orthopedist and now I had developed an entirely new issue less than 24 hours later! This is so typical for me. There were many times when I was recovering from ostomy surgery when I would tell my surgeon everything was great at an appointment and then have something go wrong the following day.

Luckily, I had an appointment with my physical therapist that evening so I could at least discuss my latest joint woe with someone. He felt I had probably just strained the Achilles tendon a bit and gave me some stretches and strengthening exercises. Because my pain was minor, he thought I could still train as long as the movement of hiking didn’t irritate the tendon. Obviously if the issue starts to become more painful I will head back to the orthopedic doctor.

So, I wasn’t sure what to expect on the adventure yesterday. Much to my surprise, I felt great and ended up hiking around 5 miles round trip with a couple thousand feet elevation gain, making it to the 13,000′ shoulder of Quandary Peak. My Achilles did not hurt and my hip felt okay. A few times along the way I just stopped and listened to the beautiful sounds of being on a remote mountainside again. I could hear the wind in the tree branches and the snow crystals hitting my jacket and it felt amazing to be out there. I actually pinched myself a couple of times to make sure it wasn’t a dream. The feeling of happiness felt so similar to those first wilderness hikes after my ostomy surgery when I realized that I would still be able to do an activity I loved so much.

Returning from a post-lunch ostomy pouch swap. With the deep snow, I use closed-end pouches instead of drainables and then pack out the full one.
Returning from a post-lunch ostomy pouch swap. With the deep snow, I use closed-end pouches instead of drainables and then packed out the full ones.
Nope. I am not dreaming and pinch myself just to make sure!
Nope. I was not dreaming and I pinched myself just to make sure!
We reached a high point of 13,000' on the shoulder of Quandary Peak. The summit can be seen in the distance.
We reached a high point of 13,000′ on the shoulder of Quandary Peak just as another snow squall came in. The summit can be seen in the distance.

I look forward to the many mountain trips on the horizon as I start to train for Rainier again. If If I end up not summiting the big peak due to all the recent training hiccups, I will be okay with that. If the fun I had today is any indication, just being on that massive and beautiful mountain is going to be a breathtaking experience in and of itself.

Relaxing in the hot tub after our hike with a perfect view of the peak.
Relaxing in the hot tub after our hike with a perfect view of the peak.

Back to the GI doctor’s office

Monday I found myself in a place that I hadn’t been to for a very long time: my GI doctor’s office. After having permanent ileostomy surgery for my UC, I wasn’t sure if I would ever need to be seen there again. However, for the past ten months, I have had canker sore-like ulcers show up on my stoma off and on in different places. I actually noticed the very first of these ulcers while changing my appliance on a backpacking trip last June. I remember calling for Doug through the woods so he could come snap a photo of it. I think he thought I was being cornered by a bear! (joking)

That ulcer was rather deep, and after showing a photo of it to my surgeon, he thought it might be trauma-related and caused by a nick in my stoma. It healed up in a few weeks, and I thought that was that. However, in the autumn I got a couple more ulcers, and since that time, I have had more of them show up and at more frequent intervals. In fact, I have a new one today. The ulcers heal quickly (sometimes too quickly– it is hard to time an appointment with my doctor when they are actually there) and don’t seem to cause any problems. Because the ulcers are a recurring issue, I shared more photos of them with my surgeon and he suggested I have them further investigated at my GI doctor’s office.

I have an awesome GI doctor, but for much of my life with ulcerative colitis, I worked with an equally amazing IBD nurse practitioner. When you have chronic conditions and end up seeing your doctors and nurses again and again, you can really develop a strong and trusting bond with them. My nurse practitioner is a very caring individual and she has worked with me during my worst UC moments. I hadn’t seen her since I was extremely ill and lying in a hospital bed during my final severe UC flare two and a half years ago. It was great seeing her again under much better health! Of course, last week’s ulcers had conveniently healed just in time for the appointment, so I once again had to rely on photos of the ulcers to explain what was going on. Thank goodness Doug is a stoma portrait photographer extraordinaire and we have been documenting the ulcer activity pictorially for months.

After looking at the photos, my nurse felt that the ulcers could be a sign of active IBD. She didn’t call it Crohn’s disease, but said that the ulcers are likely caused by the same inflammation process involved in IBD in general. She talked about how many different genetic factors are showing up in research related to IBD. What is thought of as Crohn’s or ulcerative colitis could actually be a group of different diseases which makes things hard to pinpoint in some cases. (This is my recollection of what she said anyway… I am not the best at explaining medical stuff from memory.) Regardless of the name, the suggested treatment for me was the same: a low dose of Pentasa to see if it helped resolve the ulcers. If the drug does resolve the ulcers, it would be a sign that I am dealing with IBD. If  the ulcers would actually cooperate and show up when I am scheduled for an appointment, I could also get them biopsied to provide a more definitive diagnosis. There is also a possibility that the ulcers could be caused by a virus, but that is less likely due to the recurring nature and how long I have been experiencing them. All in all though, this is a really minor thing. The ulcers seem confined to just my stoma, no other symptoms come with them, and I feel great. My inflammatory markers were fine as well. My nurse said stoma ulcers do happen for many people without progressing up the intestines. That was great news to hear.

When I was sitting in the pharmacy waiting to have the prescription filled, I found myself reflecting on the possibility that my disease was returning– even if only mildly. The weird thing was– I was not worried about it at all. I always thought that finding out my IBD might be back would be terrible news. I would have expected to be scared, disappointed or something along those lines. However, now that I was actually facing that possibility, all I felt was a sense of calm. For someone who has been plagued by anxiety lately, this new found feeling of peace was refreshing.

I didn't expect to read "for inflammatory bowel disease" on a medication label again!
I didn’t expect to read “for inflammatory bowel disease” on a medication label again.

I really can’t put my finger on the one thing that has led to this new outlook. Be it bones or intestines, I am discovering that I am far less worried about my medical issues lately– so much so that I was able to stop taking anti-anxiety meds over a month ago. I went to see a counselor and also went to some anxiety management group sessions which have helped me look at things in a new way. My mindfulness meditation practice has been important in helping me focus on the present too. The positive thoughts and prayers sent by family and friends have also been paramount. I have also been more in touch with my spiritual side which has brought peace.

Another big source of comfort is knowing that I have been blessed with some of the most incredibly kind and skilled doctors and nurses on the planet. Not a day goes by when I don’t think about how grateful I am that everything somehow came together to have each of these individuals on my healthcare team. I know they truly care about my well-being. I can relax knowing that if things should get worse with any of my health conditions, I am in really good hands.

Overall, if I had to sum up the reason I am feeling so good about things lately in one word it would be this: trust.

I trust that I am strong enough to get through anything. I trust that my family and friends will be there to lean on. I trust that my medical team will do their absolute best to take good care of me. I trust that I will always be able to help others by sharing my experiences. And I trust that whatever path I find myself on, I will make it the best journey possible.

Reaching out (feat. new video)

Last Tuesday evening, I left work in a gorgeous swirl of falling snow but promptly got stuck in standstill traffic due to slippery road conditions. I half-thought of exiting the freeway and heading home, but the destination was too important and I knew that getting there would soon melt away any stress that had accumulated on the drive. In fact, it was almost guaranteed that I would leave the event in a good mood. I always do. So where was I heading that had me filled with such eager anticipation?

The fourth Tuesday of every month is my Ostomy Association of Metro Denver meeting. I started going to these meetings as soon as I was healed enough after surgery to get to them and quickly discovered how valuable they were. When you have a condition that is hard to talk about with most people, there is a feeling of instant comfort that comes from being surrounded by others who immediately understand what you are going through. A place where it is okay to talk about normally taboo subjects such as gas, rectums and bowel movements. Now that I have been attending the meetings for almost two years, I cannot imagine not having this support system in my life. I absolutely love talking to those who are facing or recovering from surgery and doing what I can to offer encouragement. I head home from every gathering wishing I had more time to talk to everyone and eager for next month’s meeting to arrive.

One thing that I hear many young people on IBD and ostomy internet forums say is how they often walk into such meetings and feel that they are the only one in their age group there. Many times these people don’t come back for this reason, and I think it is really unfortunate. Regardless of age, everyone can relate to the overwhelming emotions that come with ostomy surgery. Though different for each person, we all have stories of difficult times, fears we are facing, successes we are celebrating and hopes and dreams for our lives beyond illness. Coming together to share our experiences and thoughts on these things can offer profound opportunities for healing. I love the conversations I have at the meetings and learn something from every single person there whether they are 25 or 70 years old.

And guess what? If you wish that there were more people at the meetings your age– stick around. The next time someone else your age is nervously walking down the hall towards the meeting room and peeks in, they will see you there and feel less apprehensive. If that person chooses to also come back next time, it has a ripple effect and soon the group becomes more diverse. Make the meetings be what you want them to be by participating and returning for the next one.

If you don’t have access to a local support group to meet people in person, there are many groups to join on the internet. I wrote a post a while back about the importance of reaching out to others online. One of my biggest twists of luck when I was in the hospital and facing the possibility ostomy surgery was that my room had a good internet connection. Whenever my favorite nurse would see me typing away on my computer at an intense pace, she would always remind of how fortunate I was to be in that room because many of the others on the floor had poor Wi-Fi signals. I don’t know what I would have done without my computer. It became a lifeline from my isolated hospital room and allowed me to meet others who had gone through surgery and gone on to lead active lives.

Because of my own experience in reaching out for help when I was sick, it is a huge priority of mine to try to answer every single comment and email I receive on this site. Sometimes it takes me a little while due to a busy schedule, but you will hear from me if you write. Last fall, an email appeared in my box from another local adventurous ostomate: Lewis Benedict. That initial contact led to other opportunities to meet up including a recent hike of Twin Sisters Peaks in Rocky Mountain National Park. Lewis is now working on his own ostomy awareness website, ostomatevillage.com, and was even on cover of The Phoenix magazine this quarter! I am so proud of his accomplishments and look forward to many future adventures with Lewis and his wife, Tara.

On top of Twin Sisters Peak in Rocky Mountain National Park with Lewis and Tara of Ostmate Village. Check out the video below for more on the adventure!
Our group (including Lewis and Tara of Ostomatevillage.com) poses atop one of the Twin Sisters Peaks in Rocky Mountain National Park. Check out the video below for more on the adventure!

I am thankful everyday that I have met so many amazing people through my ostomy association meetings, OstomyOutdoors.com, and other websites and social media. You all inspire me to no end and help keep me motivated when my own life presents challenges.

I am going to end this post with a video of the hike with Lewis mentioned above. I hope it provides some inspiration to get out there and meet other people with ostomies. If you are feeling alone while facing or recovering from surgery, or if you just want to meet other people who have been through similar things, know that there is a strong ostomy community out there. You just have to reach out.

The Phoenix magazine now available online

Beyond great doctors and following the treatment plans they prescribe, one of the things I find most important when dealing with difficult medical conditions is maintaining a sense of hope.  I simply have to be able to believe that the possibility of a good outcome exists, even if I know the road to get there might not be easy or certain. When I was facing ostomy surgery, one of my biggest sources of hope was The Phoenix magazine, the official publication of the nonprofit United Ostomy Associations of America. The minute I stumbled upon it online, I subscribed and bought all the back issues. I eagerly read every word of every issue. Along with a vast array of educational articles about products and managing an ostomy, there were countless inspirational stories about people with ostomies who were out there living life to the fullest. I learned about a woman who had hiked the Appalachian Trail and another who had visited China. I found out about a climbing guide in Alaska who had an ostomy and another individual who had climbed Everest. Reading about these people was as important as figuring out how to get my wafer to stick: they allowed me to visualize what my life could be like in the future. They gave me hope.

Last fall, I began contributing to The Phoenix myself by wring the quarterly Ostomy Outdoors column. This is certainly something I never would have visualized as being part of my future while lying in my hospital bed a couple of years ago! Life is full of beautiful surprises and being able to help people through the same magazine that provided so much inspiration for me is humbling.

Whether you are facing surgery, just recovering, or a seasoned ostomate, each issue is full of great articles on supplies, skin care, stories about others who have had ostomy surgery and so many other topics. And now it is even easier to view the publication! The UOAA is offering an online subscription for only $19.95. Find out more information and get a free preview of the online winter issue at the following link.

And speaking of hope — I hope to never let a season go by where The Phoenix doesn’t show up in my mailbox. It is such an invaluable resource for me.

Phoenix-post-web-version
The Phoenix magazine is as important as wafers, pouches and barrier rings when it comes to my life with an ostomy.

The My Hip T: a great product for ostomy pouch coverage

I have always been a bit of a gear junkie. I like having just the right backpack, sleeping bag or outdoor clothing for the specific adventure I am embarking on. This plethora of outdoor gear often comes at the expense of other things. For instance, our home furnishings are a hodge-podge of hand-me-downs. Living room color scheme—what’s that? New couch or climbing gear? The climbing gear wins every time.

I have found that just as I like the right piece of outdoor gear for a given objective, so do I like to have specific ostomy products for different circumstances. I love my Ostomy Secrets swim wrap for trips to the pool. My Vanilla Blush undies are really comfy under my jeans for everyday wear. Comfizz boxers are my favorite item for holding my ostomy pouch and hernia belt in place when I rock climb. Each of these products is unique, and I wouldn’t want to be without any of them. I always promised myself after surgery that I would not hold back on getting the ostomy items I needed to make me feel comfortable and confident—even if it meant cutting other things out of the budget.

Recently, I had the opportunity to try a product that has a very unique niche in my wardrobe and has become one of my favorite ostomy-related clothing items: the My Hip-T.  I had never heard of this product before, but last summer the designers of the My Hip-T sent me a few samples at no cost to test out and provide feedback. They have customers who wear the My Hip-T to cover ostomy pouches as well as diabetic insulin pumps and wanted my thoughts and feedback on the product. After testing the garment out, I loved it so much that I have wanted to write a blog post about it for some time. A deluge of difficult news lately put a damper on wanting to write about much of anything, but I am feeling more at peace with all the things that are happening and am ready to blog about all my favorite ostomy subjects.

Showing off the grey colored My Hip-t.
Showing off the grey colored My Hip-T.

As ostomates, we often hear about many of the products that are designed specifically for life with a stoma. However, there are many mainstream items out there that are very helpful too. The My Hip-T is a stretchy cotton wrap that is actually designed to help conceal the bum exposure and muffin top that so often occurs with lower-rise jeans. The tube-top-like garment goes over the upper portion of your pants and ends up looking like a nice layer when worn under a shirt.

Since surgery, many of my favorite shirts have ended up at the back of my dresser drawer because they are just a little too short length-wise and expose the part of my ostomy pouch that sticks out above the waistband of my pants. The My Hip-T has allowed me to re-introduce so many of these much-loved items back into my wardrobe.

I generally do not have good luck with the regular ostomy wraps that are designed to wear under jeans, skirts and trousers. My stoma is located lower on my belly, and the bottom of my ostomy pouch extends past the bend in my leg. When I try to wear an ostomy wrap to cover my entire pouch from top to bottom, it always rolls up near that crease in my leg. As it rolls up, it cuts off the flow to the bottom half of my pouch. The My Hip-T is different. Because it is designed to be worn over the top of your jeans, it clings very well to the fabric and stays in place. The My Hip-T fits snugly around my hips without being too confining and does not block the flow of output from reaching the bottom of my pouch.

Ostomy-specific wraps that are designed to be worn under my pants often cut off the flow in my pouch due to the crease in my leg.
Regular ostomy-specific wraps that are designed to be worn under my pants often cut off the flow to the bottom of my pouch when they roll up at the crease in my leg.

When I want to be absolutely sure my ostomy pouch won’t show when I reach for something and my t-shirt rides up, or if I am wearing something form-fitting, I usually wear higher-waisted ostomy underwear. They do a great job at hiding my pouch without rolling up, and I wouldn’t want to be without them in my clothing quiver. However, sometimes it is nice to wear my comfy non-ostomy undies and just let my ostomy pouch flop over them. The problem with this is that it leaves the top of my ostomy pouch exposed above my pant’s waistband. The Hip-T has given me another option for smoothing out and concealing my pouch when I don’t feel like wearing ostomy-specific underwear. It is so easy to throw one on at the last minute and have confident coverage. If I am traveling, I automatically put one into my luggage. I know that no matter which jeans or shirts I packed, my pouch will be easily concealed with the My Hip-T.

When I wear t-shirts with shorter hem lines, my pouch often shows above my jean waistband.
When I wear t-shirts with shorter hem lines, my pouch often shows above my jean waistband.
Th My Hip-T provides coverage for my pouch.
The My Hip-T provides great coverage for my pouch.
When worn under shirt, the My Hip-T looks just like a layering piece without all the extra bulk.
When worn under a shirt, the My Hip-T looks just like a layering piece without all the extra bulk or warmth.

My Hip-Ts are made out of a thick spandex cotton fabric. It is soft and looks just like a layering t-shirt or tank under my shirt but without the added bulk or warmth of a whole second layer. The product comes in basic colors, prints or an option with lace on the bottom. The one with lace looks pretty with some of my dressier shirts.

The My Hip-t comes in a version with lace on the bottom edge.
The My Hip-T comes in a version with lace on the bottom edge.

As soon as I discovered how handy My Hip-Ts were for everyday wear, I decided to give them a try for active outdoor sports. I wore one over my running tights on a trail run and was pleased with it. It held my hernia prevention belt in place well and kept my pouch from flopping around. It concealed my pouch well with my running tights and tank.

I always wear a Nu-Hope hernia prevention belt when I run.
I always wear a Nu-Hope hernia prevention belt when I run.
The My Hip-t held my hernia prevention belt in place well and helped conceal it-- even in form-fitting running clothing.
The My Hip-t held my hernia prevention belt in place well and helped conceal it — even in form-fitting running clothing.

Overall, I am impressed by this piece of clothing. At $19.95 each, the price of the My Hip-T may seem a little high at first glance, but the quality is great and mine have held up well through multiple washes. It is also made in the USA. The product can be purchased in a two-pack which reduces the cost per item. My Hip-Ts can be found at: www.shophip-t.com.

Thanks to the My Hip-T, I won’t have to part with some of my favorite t-shirts and blouses that had hemlines that didn’t work well with my ostomy.  However, that doesn’t mean a trip to Goodwill still isn’t in order. Hmmm–maybe it is time to get rid of that dress that I sewed to wear at my friend’s wedding back in the late 1990s!

A new year!

Happy New Year everyone!

Ouch! It has been an achy start to the New Year for me. No, not because of avascular necrosis (AVN), but because I went sledding yesterday. Doug and I are up in Wyoming visiting his brother and family for the New Year holiday. Even though there is not much snow, we took our sleds out to the local hill and tried to make the best of it. On my second trip down the hill, I spun out of control and hit a rock with my shoulder and twisted my back. Fortunately it wasn’t my bad shoulder. After taking a little break, we all found a better hill and spent the afternoon building jumps and zooming down the slope. I am sure I could have found a more gentle activity, but I hadn’t been sledding in years and it was so fun. And the doctor did say I shouldn’t sit on the couch waiting for things to get worse, right? I hardly thought about AVN all day and that was a blessing.

In between fun activities up in Wyoming, I had some time to look back and reflect on 2012. Other than the bad news at the end of the year, 2012 was simply amazing. It was the first year I really got into the swing of things with my ostomy. Having one now feel so routine that I barely even think about it most of the time. I also thought about the goals I had set for this past year. I was successful in reaching some of them and was unable to attain others. Here is a summary of those goals:

  • I want to do a better job of keeping in touch with my friends and family.
    I worked hard on this one, but there is always room for improvement. Having a more introverted personality, I am not much of a phone-talker. In keeping with my love of writing, I usually prefer to email and write long letters to those closest to me, but when I do call my family and friends, I always feel so uplifted. I need to add more phone calls into 2013.
  • I want to continue sharing my thoughts on this site.
    When I started this blog in the spring of 2011, I had no idea how large a part of my life it would become. The comments and emails I get from everyone mean so much to me. You are all so inspirational! I also could not foresee how important this blog is to my own emotional health. Writing here helps me process the events in my journey with IBD, my ostomy and now AVN.
  • I want to get back into working on art.
    This is an area where I fell short. I LOVE doing art,  yet there was seldom time this year to squeeze it in between work, my outdoor and fitness endeavors and blogging. On the bright side, I did write and sketch in my nature journal quite a bit this year. Seeing that this is my favorite activity of all my art-related pastimes, I am super psyched that I was at least able to do this.
  • I want to go on a climbing road trip.
    Doug and I did go on a two-week-long rock climbing trip, and it was the highlight of my year. I have trouble finding the words to describe how amazing it was to be out on the rock again with Doug day after day. Memories of that trip are going to fuel me through any hard times that lie ahead with AVN.
  • I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December.
    When I developed hip pain in the spring, I took this goal off my list. I didn’t feel that my body was up for it. Though this was very disappointing, I was happy to follow the Team Challenge adventures of several of my fellow bloggers. To all of those who participated this year: Good job! I loved reading about your Team Challenge successes.

So what is on the goal list for this year?

I have only one: to try to live in the moment as much as possible each day. I know goals are supposed to be more specific than this, but being in the moment is one of my biggest challenges. I am a person who has always planned for the future and worked hard to achieve the things I longed for in life. It seemed reasonable that if I did a and b it would at least somewhat lead to c. Barring a few surmountable obstacles, life felt like it was in my control. Lately, things feel a little different. With a chronic health condition, there are so many more variables involved. It can really make it hard to visualize the future.

In light of this, I decided that the perfect goal for the upcoming year is to focus on the present. There are so many beautiful moments in each and every day. In fact, this trip to Wyoming has been full of them:

  • Sitting down yesterday afternoon to write stories with Doug and his brother and then hearing my niece read them out loud, carefully sounding out each new word.
  • Taking a nap and having a contentedly purring cat curled up next to my chest.
  • Flying over sledding jumps and giggling like a little kid.
  • Dancing with my niece in the kitchen to Katy Perry tunes.

So here is to a great 2013! I may not know what the year will bring but I do know that by focusing on the present, I won’t let any of the joy it holds slip by unnoticed.

Catching air on the sled hill.
Catching air on the sledding hill.