Dealing with the anxiety of a new condition

Happy holidays everyone! I hope that you are having a joyous season and are looking forward to the New Year.

After a rough week, some holiday fun is exactly what I needed. I had several days off from work, and got out to do some active things to get my mind off my recent avascular necrosis (AVN) diagnosis. On Saturday, I did a Rainier training hike up Bear Peak in Boulder, CO, with Doug and his Dad. The hike gained over 2,000 feet of elevation in roughly 3 miles and provided a great workout. I found that my pack did not bug my shoulder as long as I tightened the hip belt enough so that the weight was carried mostly on my hips (thank goodness for a great stoma placement that sits below my pack’s waist-belt).  I usually use two hiking poles, but skipped using the left-hand one so that shoulder wouldn’t have to work too hard.

Hiking with one poll while resting my left shoulder.
Hiking with one pole while resting my left shoulder.
Goofing around and testing out my shoulders on the summit of Bear Peak.
Goofing around and testing out my shoulders on the summit of Bear Peak (8,461 feet).

The next day I went to the gym for some Zumba (minus most of the arm motions) and then did a leg workout on the weight machines. On Christmas Eve Doug and I spent a little time up in Boulder where we enjoyed lunch at an Italian restaurant. When we got home, I baked gluten-free cookies in various fun shapes including trout, dinosaurs, and Christmas trees. Next day, on Christmas, we met Doug’s parents at Loveland Ski Area, and I also called my parents in Washington to wish them happy holidays from the lodge. It was a bluebird day on the slopes, and the fresh overnight snowfall made for some awesome boarding. I was concerned that pushing myself up into a standing position on my board after falling or sitting would hurt my shoulder, but it felt okay. My body is a little sore today, but that is to be expected as it was my first day of snowboarding this season.

Enjoying Christmas at the lodge with hot cocoa and cookies.
Celebrating Christmas at the lodge with hot cocoa and one of my homemade cookies.
The sun sets as Doug and I get some final runs in.
Enjoying the mountain light after a long day on the slopes.

When I was recovering from ostomy surgery and was dealing with grief and anxiety, I found that keeping busy and getting out to do things with my family and friends helped me feel better. I am finding the same thing is true as I deal with the uncertainty of a new condition.

That said, I have also found that the anxiety levels that have come with my diagnosis of avascular necrosis have felt 100 times worse than what I experienced with ulcerative colitits and my ostomy. I think this is due to several things. First, other than anti-inflammatory meds for pain and physical therapy to help maintain range of motion, there aren’t really any treatments to pursue at this time to halt the progress of my specific case of AVN. From my previous life experiences, when I had an injury or illness, there were always steps to be taken to try to heal the condition and help things improve. It feels very new and foreign to me to have a condition that likely won’t heal and is degenerative.

The stats also aren’t as promising with AVN as they were with my ostomy. Before my ileostomy surgery, I had heard that over 90% of people who had the operation for UC were happy with the results. (I certainly am!) Though there hasn’t been much research on steroid-induced shoulder AVN, I did find a few prognosis statistics in online medical textbooks and journals:

  • 55% of those with humeral-head AVN from steroids get it in both shoulders
  • 76% of those with shoulder AVN also get it in the hips (and 2/3 of that 76% get it bilaterally)
  • 90% of those with AVN in the shoulder due to steroids eventually have it show up in another joint

Third, I am having trouble finding hopeful tales out there of people who have had steroid-induced AVN and went on to lead athletic lives. If you have had AVN related to prednisone and went on to climb, snowboard, backpack, etc., or know someone who has, please email me! When I was getting ready for my ostomy surgery, though there were horror stories out there, I was able to find at least some websites related to the athletic things people were still able to do without their colons. I am trying to find such inspiration for AVN.

Recently, I realized that I needed to get some help to deal with my heightened level of anxiety that came with the recent diagnosis. I couldn’t concentrate on anything, and I was a tearful, scared mess. After my fourth sleepless night in a row, I tried to lift a glass and found I was shaking so badly from anxiety that the water was practically sloshing out over the sides. I sat the glass down, and immediately emailed my primary care doctor. I must have reached her at a good time, because within two minutes my phone rang. We talked for about 20 minutes about the current turn of events and the anxiety. She made me feel so much better and told me that I had dealt with UC and my ostomy so well, but that this was likely just one thing too many for my mind to deal with. After our conversation, I decided to give some medication a try. She also recommended combining the drugs with counseling and meditation, so I have an appointment with a counselor in January and am taking a refresher course for mindfulness meditation in a couple of weeks.

I have always been very thankful that anti-depressant and anxiety medications are available. I know many people who have been helped with these drugs. However, this was my first experience taking them and, just like with my ostomy surgery, I found myself wrestling with stigmas. In my circles especially, where my friends and I are into holistic treatments and solving things through diet and exercise, I really had to fight to not judge myself for needing to take this medication and for being unable to solve my problems in a more natural way. But I also knew I was miserable and that the path to wellness isn’t always so simple. It is important to use all tools available. I am hoping that counseling, medication, meditation, exercise, physical therapy and the support of my family and friends will form the perfect combination to get me through this.

With that said, I promise that I will get back to writing about more things ostomy soon. Before finding out about the AVN, I was working on a post about some great ostomy wraps. Stay tuned for that and my continued Rainier-training adventures.

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Searching for the hopeful Heidi

It  has been a hard couple of days. I wish I could find my usually positive and hopeful self right now, but the only emotion I seem to be capable of summoning up is dread. I spent several hours last night curled up crying on the couch and probably shed enough tears to fill about three ostomy pouches (yes I was rehydrating). I tried to think on the bright side and I kept telling myself that things could be worse, but I simply could not turn off the waterworks.

One of the things I am trying to deal with are the why me thoughts. I had tried so hard to make good decisions in the course of my ulcerative colitis illness. One of the reasons I wanted my ostomy so much, and made my decision to get one rather quickly once my disease turned severe, is that I wanted to avoid  possible side effects of the serious drugs. A lifetime of weak bones or joint pain sounded horrible to me and yet here I am; facing the exact thing I had tried so desperately to avoid. It almost makes me wish I could have had my colon removed the first day I heard the word ulcerative colitis.

I also can’t help blaming myself. There was a point about five months before my disease turned severe when I discussed progressing to the next tier of medications with my GI medical team. I was only experiencing mild UC symptoms at the time, but constant small-scale blood loss from my intestines had made my iron reserves low and we were having trouble managing them at the correct levels. I had been taking mesalamine and doing Rowasa enemas and they had been controlling most of my issues well. However, they were not stopping the constant intestinal bleeding.  I was told about Imuran as one possibility and had bloodwork done that confirmed I could take it. I  was also told about a probiotic called VSL#3. My choice was to try the VSL #3 and avoid the immunosuppressant at that time.

A short time after starting the VSL #3, I went into the most beautiful remission imaginable and had no UC symptoms whatsoever.  It felt like a miracle. Unfortunately, the vacation from UC was a short one.  Soon I was hit with my most severe flare ever. I was going to the bathroom 20-28 times a day and could not stay hydrated or maintain my weight.  I was in rough shape and was admitted to the hospital and put on a high dose of IV steroids to try to get the flare under control.

Now I can’t help wondering if I had chosen the Imuran five months earlier: Would I have avoided those emergency high-dose steroids and the AVN mess that I now find myself in?  I know these thoughts probably aren’t productive. In a way though, it feels like my brain has to chew through these questions to find peace and realize that, yes, I made the best decisions I could at the time.

Above all else though, my biggest issue and the one that had me sobbing at 2 a.m. is fear. I am absolutely terrified of what might be ahead.  I was frightened by my UC diagnosis and was anxious about my ostomy surgery, but the AVN diagnosis takes things to a new extreme. I know I only have it confirmed in one shoulder now, but I am actually having a hard time finding stories of steroid-induced AVN where it only affected one joint. I am trying to stay optimistic, but the uncertainties are daunting.

When I saw a counselor to help me cope with anxiety after my ostomy surgery, she gave me some mind exercises to try. One of these was to picture myself sitting in my favorite place outdoors with clouds floating through the blue sky above. She said whenever I had a worry, I should visualize taking it and sitting it on one of the clouds. It was important to acknowledge the fears, but it was also necessary to let them go and not be weighed down—the clouds could hold the weight.

So I thought it might be good to list some of my fears and “put them on the clouds.” Some are small worries, some are larger, but all of them are weighing me down. They are listed in no particular order.

  • I am afraid my joints are going to die one by one and that I am going to experience endless pain and surgeries.
  • I am afraid that if the disease progresses, I will never be able to backpack, climb or snowboard again.
  • I am afraid this might worsen and that I won’t get to attempt Rainier this summer.
  • I am afraid that Doug is going to miss out on so many things if my AVN got really bad.
  • I am afraid that someday I won’t be able to work at the park naturalist job that I absolutely love.
  • I am afraid it would be hard to empty my ostomy appliance while healing from shoulder replacement surgery.
  • I am afraid I will cease to have inspiration for one of my huge passions in life—my Ostomy Outdoors site—because I will no longer be able to go on adventures. Ditto for my Ostomy Outdoors column in the Phoenix magazine.
  • If I couldn’t work, I am afraid I won’t be able to afford health insurance.
  • Without health insurance, I am afraid I wouldn’t be able to get any necessary surgeries.
  • Without the necessary surgeries, I am afraid I would be doomed to a life of pain.

Just a few tiny concerns, huh? I know that I will work through these fears in due time and that the Heidi that is so full of hope is close by. In fact, I am pretty sure I know where to find her. As soon as my schedule clears, I plan to head up to the mountains and search for my more happy and positive self. I am certain that that part of me is up there, skipping along the trails or zooming down the snow slopes and that soon we will reconnect.

A fear becomes reality

The appointment yesterday started like so many others: weigh-in, check oxygen levels and blood pressure, and review my symptoms with the nurse. Then the orthopedist came in. We talked a bit about my recent shoulder pain and everything seemed as I would expect for an orthopedics appointment. Over the years, I have had a fair number of doctor appointments related to sports injuries. My recent MRI of the shoulder had shown tendinosis with some bone-marrow swelling in the head of my humerus. I really thought this was all due to overuse and that the doctor and I would soon start talking about all the exercises I needed to do to get the joint strong again and to reduce the swelling.

However, I soon realized that the conversation was taking a strange turn; the doctor wasn’t asking me any questions about the sports I had been doing. Instead, he was asking me about past medications. A sickening wave of intuition swept over me and made my stomach knot up and hands tremble. As I described my history of ulcerative colitis and prednisone use, I knew the words that were going to come out of his mouth as he turned to the screen and began to flip through the layered images from my MRI. He stopped and pointed to a specific spot on one of the pictures and broke the news. I have avascular necrosis — the bone in my humeral head is dying. Avascular necrosis was the one possibility that had frightened me so much about my hip pain last spring. That joint ended up being healthy on the MRI. This time, I was not so lucky.

As the appointment progressed I learned some things about the disease. Though doctors don’t understand exactly why, prolonged corticosteroid use can stop the blood flow to certain bones. Without an adequate blood supply, the bone tissue dies. I never felt that I was on prednisone for a huge amount of time — a total of 180 days scattered throughout the four years I was officially diagnosed with ulcerative colitis. Some of that time was comprised of month-long tapered dosages of 40 mg or less. However, I was on a dosage as high as 80 mg for a few days when I was hospitalized with UC during my final flare. The problem is, even if you are only taking a high dose of prednisone for a short period of time, it takes a long time to taper off the stuff which means it is going to be in your system for a while. Even after I had decided I was done with UC drugs and wanted to pursue surgery, it took me over three months to get down to zero mg of prednisone. By that time, the damage had already been done.

The progression of avascular necrosis can’t be predicted, so I don’t know if the joint will get worse, and if so, how long it will take. I am starting to have a similar pain in the right shoulder, and the orthopedist said it could also show up in that joint. Oftentimes avascular necrosis will occur bilaterally — for instance, in both shoulders or in both hips. In the future, other joints could be affected too, but there is no way to predict if that will happen.

My case was caught early, so at this point the main treatment is to take anti-inflammatory medication to help reduce the swelling and manage the pain. Not putting a large amount of stress on the joint is important too. Other than that, I just wait and see what happens. Right now, the area affected is not big enough to justify surgery. The orthopedist described some of the surgical options if it does get worse. He was honest with me and said that he has not seen many cases of avascular necrosis in shoulders and he has treated many more cases of it in the hips. He was going to do some research and talk with colleagues about my case. Leave it to my body to take the rare road once again. (My colorectal surgeon always said that I got extra points for creativity because my body often did the unexpected. The trend continues.)

This brings me to one of the bright sides in all of this. This orthopedist was new to me, and I really liked working with him. Not only do I appreciate honesty and the willingness of a doctor to sometimes say I don’t know, but this individual was very personable which I value highly. Somehow, chatting with the doctor about great gluten-free pizza options in the neighborhood or hearing stories about the ranger programs he went on with his family while visiting national parks this summer made me feel better in the midst of the bad-news diagnosis. When I asked the doctor if rock climbing was out of the question, he told me I could still go, but that I should choose routes that relied more on the legs and were less intense on the arms. He said climbing could cause pain in the shoulder, but that not doing it would cause pain here (and he pointed to his head and heart). I thought wow, this doctor gets it. I also asked him about Rainier, and he said I should still go for it as it was a lifetime opportunity. One of his colleagues had climbed the peak last year so he knew what it involved. He said with a smile that I better get training. Oh yeah, and he gave me a list of herbal supplements to try instead of ibuprofen if I wanted to go a more natural route to control the inflammation and pain. The doctor also said numerous times that he was sorry I had to go through all this. A simple phrase, but one that showed compassion.

If all of that wasn’t enough to earn my initial respect, the orthopedist knew a good deal about Crohn’s disease and ulcerative colitis. At one point, I asked him if my hip pain last spring, which showed no cause on an MRI and has mostly resolved with physical therapy, could be an early sign of avascular necrosis in that joint. He said he couldn’t say for sure, but that I shouldn’t worry about it unless the pain gets worse. He pointed out that joint pain can happen with IBD, even after the colon is removed, and the hip issue could be from that.

Still, I left the appointment in a state of shock, and the news took a little while to sink in. I stopped at the health food store and got the supplements my doctor recommended and then went on to Costco for a few items. I made my way through the aisles and dropped the giant-sized packages of Parmesan cheese, soup and toilet paper into my cart. I listened to the employees cheerfully describing the food samples they were handing out, but I could barely understand the words. I wasn’t present — my mind was in the clouds, a mile above the warehouse, trying to comprehend this latest diagnosis, and I felt dizzy and nauseated. I paid for my items, loaded them into my car and collapsed in the front seat and cried.

In many ways, this news is harder for me to accept than getting an ostomy. I knew living with an ileostomy wouldn’t be easy, but I was always confident that I could do everything I loved once I healed up and made it through the initial learning curve. I also knew that an ostomy would likely be my cure for a life without the pain of ulcerative colitis. Knowing that I have avascular necrosis feels different. There really is no end, as there is a chance the disease will progress and that the pain will worsen. And if it does, it will have a big effect on the things I love to do. For the first time in my life, I am having trouble picturing what my future will be. Of course, as with ostomy surgery, there are tales of hope out there. Brett Favre had avascular necrosis and was an amazing athlete.

After my meltdown in the parking lot, I headed home to meet Doug. Though I felt a strong urge to spend the afternoon crying my eyes out in bed, we had already made plans to check out an exhibit on Pompeii at the Denver Museum of Nature and Science. Viewing the exhibit was a moving experience, and seeing the casts of the people that died fleeing from the unexpected eruption of Mt. Vesuvius provided a somber reminder that none of us really know what the next minute will bring. I left the exhibit knowing that it was important to take things day by day and hope for the best.

Heading out to Zumba with my sad shoulder.
Heading out to Zumba with my sad shoulder.

And a big part of that is doing what I love. When we returned home from the museum, I got dressed for Zumba and went to the gym to dance with all I had. Then I did something else that fills me with joy: writing on this blog. With each word I typed, I felt better, stronger and less alone. I don’t know what avascular necrosis will mean for my ostomy outdoors adventures, but I do know that you will all be alongside me on the journey.

Lessons from a winter hiking trip

Sometimes after a busy summer season of packing and unpacking for an outdoor trip practically every weekend, I need a break. October and November were quiet months. I did some trail running, but didn’t go on any major adventures. The rest from the hectic pace felt wonderful and much needed.

Another reason I have been taking it easy is that I developed some unusual pain in my left shoulder in mid-October. My shoulder did great on my two-week climbing trip, but a couple of weeks after returning, the joint started to throb and hurt constantly. Ever since I was a teen, I have had off-and-on trouble with tendonitis in that joint and had even been working with my physical therapist over the summer to get my shoulder stronger and resolve these issues. Things had been going splendidly with the therapy, and before my climbing trip, my physical therapist thought I might even be close to not needing another appointment.

Unfortunately, that is not how things worked out. The new shoulder pain is different than what I had come to expect with my occasional bouts of tendonitis. Because of this, both my PT and doctor thought it would be a good idea to get an MRI. The test results showed tendinosis (a chronic form of  tendonitis) and also bone-marrow swelling in the head of my humerus. What this means exactly I do not know. My primary care doctor has referred me to orthopedist, but my appointment isn’t for another week. Of course, my mind once again wants to run to all the scary what-ifs of the situation. What if the marrow swelling isn’t from the tendinosis and is instead  being caused by… (fill in the blank with numerous frightening conditions here). What if I can never rock climb again? Ahhhhhh……

However, if there is one thing UC and having an ileostomy has taught me, it is that dealing with uncertainty is part of life. Instead of letting myself fall into my usual pattern of worry, I am going to try to forget about my shoulder until my appointment next week and focus on the activities I can do. One of these is hiking. Even with a backpack, hiking doesn’t seem to bother my shoulder at all. And on the plus side–hiking is the most important activity I need to be doing right now to train for Rainier.

So on Sunday, I set out with Doug and his dad to hike up a peak. Our original plan was to hike James Peak (elevation 13,294′). However, just before exiting the freeway for that destination, we had an idea. Let’s do a 14er instead! The road leading to Grays Peak (elevation 14,270′) was just a few exits up the road. Colorado is experiencing a very dry winter, and with the trailhead access snow-free and avalanche danger minimal, it was the perfect chance to get to the top of this peak.

The high temperature for the elevation we were at was in the mid-30-degree range, but with 30 mph winds, it felt much colder. I had packed 28 pounds of gear, including lots of warm clothes, food and three liters of water (Doug also carried an extra liter for me). I was surprised at how great I felt hiking at such high elevations with this weight. I had been expecting it to feel much harder after not hiking any big peaks since July. We made it to the summit in late afternoon and enjoyed the gorgeous views, including those of close-by Torreys Peak, another 14er. Though we had earlier thought about trying to do both peaks, we realized that the late departure from the trailhead on this spontaneous trip would not afford us enough daylight to get in double summits.

Descending Grays Peak with Torreys Peak in the distance. So close but oh so far.
Descending Grays Peak with Torreys Peak in the distance. So close but yet so far.

My ostomy caused no issues on the hike. I had to swap out closed-end pouches (I prefer these to drainables on peak climbing days) twice during the excursion. At one point on the ascent, I realized that my pouch was getting fairly full. I was behind a ridge that offered some protection from the wind and there was also a tall cairn to duck next to. Doug and his dad were a little ways back on the trail and there was another party about 500 feet behind them. There was no one coming the other direction, so I decided to seize the opportunity to swap out my pouch right there on the side of the trail. I grabbed a small trash bag and fresh pouch out of my pack, ducked behind the cairn, pulled the waistband of my softshell pants down and quickly swapped out pouches. By the time Doug and his dad caught up, I had the used pouch and my other supplies packed up and was ready to keep hiking. I know that on Rainier, I am not going to have much privacy when roped up with teammates on a glacier. It is reassuring to know that I can swap out pouches so quickly and discreetly.

Ducking behind this cairn to swap out my closed-end pouch right along the trail was easy and discreet.
When no one was close by, I ducked behind this cairn to swap out my closed-end pouch right along the trail on the ascent. I also swapped out a pouch on the decent. For that one, I just walked off the trail about 50 feet and turned my back so that no one could see what I was doing. I continue to discover that using closed-end pouches on these types of hikes is a very easy and discreet way of managing an ostomy.

The big challenge for me on this particular hike was the cold and wind. It was even more frigid than during our winter hike up Grizzly Peak last December, captured here on video.

Fortunately, in preparation for Rainier, I had purchased several new clothing items. This was a perfect chance to test them out. One new addition to my outdoor clothing quiver is a super warm down jacket with a hood. I have lighter jackets, but only this one is warm enough for extremely cold conditions. As I stuffed the two pounds of down luxury into my pack before the hike, I really thought it was going to be overkill. However, as  I threw this jacket on at breaks and at the summit, I soon realized it was a lifesaver.

Despite taking part in countless winter camping and backpacking trips, ice climbs and peak ascents over the years (including several since my ostomy surgery), I have never been as cold on a trip as I was on this particular hike. I am not sure why this was the case as I was dressed well and eating and drinking plenty. Regardless, some combination of wind, cold, shade, and my body on that given day had me freezing. On the summit I was so chilled that I could hardly grip anything. I had to use my teeth to zip up my jacket. As I descended back to the car, I kept having the urge to lie down and sleep. I would pass a boulder and think wow, that looks like a comfy spot to snooze for a little while. But then I would see Doug and his dad coming up behind me and would realize I didn’t have time for a nap. I don’t know if I was hypothermic, but if not, I was close. I shudder to think about how cold I would have gotten had I decided not to bring that down jacket.

On the summit with Doug and his dad in my super warm puffy down jacket.
On the summit in my super warm puffy down jacket.

I realize that having an extra-warm clothing item like this during cold temperature activities is especially important with my ostomy. Even though it only takes a couple of minutes to stop along the trail and swap out a pouch, I do have to expose a small section of my belly to the elements. In extremely cold temperatures, it doesn’t take long to lose heat by doing this. Packing conservatively with plenty of warm clothes is of paramount importance.

I can’t wait to head out on our next training hike, and I am starting to compile a list of peaks to attempt that have good winter trailhead access and low avalanche danger. For future training hikes, I will have to progressively increase my pack weight to at least 40 pounds (the expected weight of my pack on Rainier). I guess this means I can bring an extra large lunch next time!