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.

13 thoughts on “A fear becomes reality

  1. Heidi, there are no words. I am so, so sorry. You have so much grace and courage. My heart is with you.


  2. Heidi,
    You are a survivor! Remember who you are and how far you’ve come. Stay strong, stay positive because it worked for you before.
    I hope you didn’t use permanent marker on your shoulder because you may want to change it one day to a smiley face.

  3. Thinking of you! You are such an inspiration but its still “okay” to sit and have a good cry! Get it over and out and move on…I’m sure you’ve already taken that road!

  4. Hi again, I’m sure this is a smack in the teeth again. But it’s seen early as you say and meds can be taken to ease things and so on. You had really no idea what life would be like with a stoma and ………
    I know it’s tough but you have the rest of us to moan at
    ….anyway back to recording the school play !! Kindest regards!! Darren

    1. You are right Darren. I did have no idea what life would be like without a stoma and everything turned out fine…amazing actually! I am sure some day I will look back at this obstacle and realize that things, though scary and painful, turned out okay and that I will be a stronger person because of the journey.

      Hope the school play was great!

  5. Hello, I am a fellow AVN-er, who also lives in Denver and is very active. I was dx with avn in both knees in July

    , than both hips in October. The docs at st. Joes did a core decompression on all 4 joints 4 weeks ago. I am healing nicely and am really optimistic. I think you are very lucky to have the doc you have. They can make or break your positive reaction. I say this because I believe in the power of the mind and as hard da it is, it is super Important to stay as positive as you can. I would love to chat more with you, maybe even get together for a lunch?

    Much love,

    1. Hi Andree,

      Sorry I have not gotten back to you yet. It has been quite the week. I too believe staying positive is so important. I am sure I will get there once the initial shock of all this settles down. I would love to meet up to chat. I know how important it has been for me to meet other folks locally who have ostomies. Fortunately, there is a local support group which made it easy to find others with the same condition. It seems so much more difficult to find people to connect with in-person who have AVN. I will send you an email soon.

      I had my colon removal surgery done at St. Joes and had several related hospital stays there, so I am very familiar with the place. I had very positive experiences with the doctors and nurses there.

      Take Care,

  6. Hi again!
    I couldn’t help but notice you mention a package of cheese. If I can suggest, I would stay off dairy for a while. Our bodies have trouble absorbing nutrients in the first place and the cheese may just be causing a PH spike more than anything else. If that is the case, your body will actually draw calcium from your bones to try to neutralize your PH levels. There is a good article here: http://maxcelint.com/NaturalHealthDirectory/272/the-role-of-calcium/
    I ran into problems with my hips and shoulders. After taking out dairy, caffine, highly acidic foods, and preservatives, I no longer have any problems (your shoulder sounds more advanced, but can’t do any harm). I also went back to my regular yoga schedule.
    I hope things improve for you! I’m sure you’ll be back climbing before you know it! I am now teaching climbing to street kids in Kabul!
    There with you…

    1. Thanks! I will look into the article. Also, I am hoping to get back into yoga soon. There will be poses I can’t do due to the strain on my shoulder, but my physical therapist said if I make adjustments and things seem to feel okay, it would be a beneficial activity to do. Way to go on teaching climbing to kids in Kabul. I am sure you are making a big positive impact on their lives.

  7. Ugh….hoping that shoulder’s smiling soon! Been reading your blog most of the evening….hang in there! Shannon

    1. Thanks Shannon! Actually the shoulder is doing quite well. Sure it hurts and the dead spot isn’t likely to ever heal, but physical therapy is working wonders to keep the range of motion good and build strength to support the impaired joint. I even went to the climbing gym and did some routes last weekend and things felt pretty good. So glad the blog is helping you!

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