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.
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.
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.
Ostomy Outdoors 
You seem to be a really strong person. You hang in there. I really never took a lot of steriods. At least for now anyways, because I have been in remission for a little over six months. When I did bleed the doctor just increased the Asacol. Maybe that was a good thing who know. My doctor did not like putting me on steriods all the time. I still don’t know what is going to happen to me. I am on the geneic brand of Imuran and am taking a low doseage of it now. I did not want to go that route but I felt it was necessary at the time.
Thanks Carol. I really wasn’t on steroids that much either in the whole course of my illness and my doctors were always cautious with them and only put me on them when absolutely necessary. Most of the time my disease was mild-to-moderate and well-controlled, and I was just on Asacol and Rowasa. I was officially diagnosed in 2006 (even though I had symptoms since 1999) and didn’t take any prednisone until the summer of 2007 when I had a bad flare and took one 40mg taper over a month’s time. In the summer of 2008 I took another month-long 40mg taper for a flare-up. That was it for the steroids until 2010 when I had the bad flare that led to surgery. I started a 40mg taper, but things quickly worsened and I was hospitalized and put on a high dose of IV steroids because I was in rough shape. Without that dose of steroids who knows? Things could have ended up worse. I was just unlucky that my body reacted this way. So hard to know what to do with medications. I am glad to hear the Imuran is working for you.
My Imuran stopped working for me now! Is there any good surgeons that you know in the Colorado area that I could check out for my surgery. I live in Florence, CO which is 31 miles south of Colorado Springs, CO.
Hi Carol,
I would think the best colon and rectal surgeons in Colorado probably work out of the Denver area. I would highly recommend my surgeon. His name is Dr. Craig Brown. (http://www.surgone.com/DrBrown.html). He is an incredibly skilled surgeon and is a very kind and caring person. I cannot say enough good things about him. Honestly, I never get scared thinking about something going wrong with my ostomy anymore because I know that if it does, he is there to help me out. I trust him with my life. I wrote a blog post about him a while back.
https://ostomyoutdoors.com/2011/11/20/part-four-in-a-series-i-am-thankful-for-my-surgeon/
Best Wishes,
Heidi
You hang in there Heidi. I’ll be praying for you. You’ve been a blessing to me the past 3 months as I prepared for and dealt with an ileostomy. I’ve read all the posts on your blog and it helped me so much to see what an active and happy life you lead. I’m sure you’ll deal with the AVN with the same grace and strength you used to get you through your Ulcerative Colitis.
Thank you for being such an inspiration to me.
Michelle
Thank you Michelle. Your thoughts and prayers mean so much to me. I have been feeling better emotionally the past couple of days. My fears of AVN are starting to fade to the background as I focus on the good things in my life. Just today I was putting together a puppet show for a kids’ program at work and was thinking of how fun and awesome of a day it was.
-Heidi
I can’t wait until I am feeling well enough to go skiing, camping, hiking and swimming again. I’m hoping to be ready by may so I can go to my favourite guide/scout camp and test out my new tent!
Well, it looks like things are not going good for me. I have chosen not to try the Remicade or Humira. I could not afford it anyway. My insurance does not cover Remicade anymore and Humira would have cost me $200 dollars a kit! Anyway I am thinking of having the surgery. I am just tired of abusing my body with these drugs. I hope I can be as strong as you. Right now I am feeling sad, full of anxiety and am depressed. I seem to want to fight with everyone sometimes. I am full of stress by all means! I did have to let some people on my husbands side of the family go. They were causing me lots of stress so finally out of respect for myself, I had to just not hang around them anymore. I don’t really need to get into that but I am feeling better about. I don’t know about doing the J-Pouch after the surgery. Could you tell me why you never had the J-Pouch done if you do not mind? I am scared of it not working.
Hi Carol,
Don’t feel bad about not trying Remicade or Humira. I think sometimes the medical world (and sometimes the people close to us) make us feel like we have to try every last ditch thing to save our colon… but there are some things that we may not want to try. These choices are such deeply personal decisions and hard to explain to others. You are the one who will be living with your choice so you must do the thing that most deeply resonates with YOU.
I had no interest in being on Remicade or Humira for the rest of my life and felt that surgery was a better option for me from the beginning. And my insurance would have covered the drugs. I basically only agreed to take about three infusions of Remicade in order to get myself out of a severe flare so I could be in better health for surgery. Turns out I had a horribly painful reaction to Remicade in my joints anyway and stopped after the first infusion. Still, as I mentioned, I had no intention of being on it long term and made that clear to my docs. I always felt that I would rather have an immune system than a colon:) It would have been different if I had Crohn’s with small intestine involvement and the meds were the only option possible for not be incredibly sick. However, with UC– I knew surgery would get my quality of life back and it has in every way that I could have ever hoped for.
I also had no interest in trying a j-pouch and wanted to go the permanent ileostomy route right away. I felt it better fit with my career and the sports I love. Plus I really didn’t want to go through more surgeries and miss more work. I just wanted to get on with my life and be free of anything remotely resembling UC. The permanent ileostomy seemed like the best way to get to that point and I wasn’t worried about having a bag on my abdomen for the rest of my life as long as I could still do the things I loved. Which I can! I am so happy with my decision. I explain my choice in greater detail in this post:
https://ostomyoutdoors.com/2011/10/17/permanent-ileostomy-or-j-pouch-that-was-the-question/
It is normal to feel sad and anxious. I was a nervous mess before surgery and during the initial months of recovery. Surgery is scary! Just take it day by day and keep leaning on the people in your life who are supportive. I would also recommend joining an ostomy support group (It looks like there is one in Colorado Springs). You don’t have to have an ostomy yet to go to these meetings. People who are facing surgery come to ostomy support meetings too. Oftentimes meeting someone in person who already has an ostomy can help alleviate many fears.
http://www.pikespeakostomy.com/
I am a pretty introverted person and can be somewhat shy in larger groups. I was a little intimidated to join my local ostomy support group at first… but I have met soooo many wonderful people there who have become dear friends. I can’t imagine not having the ostomy support group in my life.
Feel free to email me anytime too.
Thinking of you!
Take Care,
Heidi
I thank you so much for your input. It made me feel so much better. I will talk to my doctor about a surgeon. My husband is so scared about me having to be cut into that it does make him nervous. I will get the best doctor I can. I have not bleed since the 1st of June but before that it was very little on the tissue for two weeks. The Imuran just works a little. It does cover the bleeding somewhat and works enough right now for it not to be serious. I was really not certain that I wanted to use the medicine at first but I felt pressured by my old doctor to do it. I am not sure about the health food stores helping me with this UC stuff, but some people do it. I need to get off this Imuran though because the side effects are so scary! I will get a surgeon in Colorado area. I was wondering is it possible for the UC to spread to different parts of the body even after your surgery? I have been tested for Crohns and do not have that. I will be going to a meeting in the Springs soon. I think it will help me so much. Again, thank you for your support and truthfulness! I hope that I can do the things I love when I get back into shape and feel better!!!!!