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.

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