Category: Remicade and other medications

Dealing with the anxiety of a new condition

Published on by ostomyoutdoors10 Comments

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.

Searching for the hopeful Heidi

Published on by ostomyoutdoors18 Comments

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

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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.

Happy anniversary Ostomy Outdoors

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Today is the one-year anniversary of Ostomy Outdoors. I can’t believe it has already been 12 months since I wrote my very first post! I never imagined when I started this blog what a big part of my life it would become. I am so thankful for all the things that keeping this blog has taught me and brought to my life… including so many new friends. Thank you all for reading, commenting, emailing me and continuing to inspire me with your stories and experiences.

Today ended up being the perfect day to celebrate this anniversary, as I got some amazing news. The MRI results on my hip and pelvis came back showing absolutely no bone damage– including no problems from prednisone and no stress fracture. Turns out what had originally looked like a fracture on the x-ray ended up being nothing. What did show up on the MRI though was a uterine fibroid. I already knew it was there, as my surgeon had told me about it after my ileostomy surgery. However, it has gotten a bit larger. The orthopedic surgeon thinks it may be hitting a nerve and causing my pain, so he referred me to ob/gyn for further evaluation. If they feel the fibroid isn’t an issue, the orthopedic surgeon will refer me to one of his colleagues that specializes in lower back injuries to see if something might be going on there.

My doctor also said that, depending on what I can tolerate pain-wise, I can go back to any workout activities I want to and it will not cause any damage. This news could not have come at a better time because yesterday I was really in the dumps. I had discovered that my body decided to vote its canine tooth team member out of my mouth due to a strange autoimmune response and that tooth extraction may be imminent. (I will write more about his in a separate post.)

But fibroids and teeth issues matter none to me now. I can walk! I can run! I can climb!!! And how does one celebrate an anniversary and such great news? Chocolate? Wine? Both good choices, but what I really wanted to do was dance. I drove to the gym from work intent on making the 6:30 p.m. Zumba class. I threw on my neglected workout clothing, grabbed some water and barged into the fitness activity room at the gym. Oops- there was no salsa dancing to be seen. Instead, people were spread out in meditative yoga poses and didn’t seem too happy with the interruption. In my excitement over the good news, I had completely gotten my days mixed up. Yoga is on Thursday and Zumba is on Friday. It was too late to join in on yoga, so I did 20 minutes of elliptical instead. I didn’t care what fitness activity I was doing. It just felt so good to move my body. I realize now how much I rely on exercise to reduce my stress, and how much not moving much had increased my anxiety and tension levels.

There is one more reason that I am so overjoyed with this news: I will be able to get back out on the trails with my video camera. I have so many outdoor activities planned for the summer that I want to film and write about. Here is to the next year of amazing adventures for all of us!

Me on the snowboarding trip in April 2011 that inspired the idea of Ostomy Outdoors.

A long restless night

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Darn that almost-to-be supermoon. Its bright light made me think it was morning and it is barely 2 a.m. Jolted awake by hip pain, I was hoping it was almost time to get up and start my day.  Instead, I am faced with some long anxiety-filled hours before the alarm clock is due to ring. It has been a while since I have been up at this hour in pain, but in the past few weeks this scenario has become a regular occurrence.

At this late hour, I am scared, hurting and my mind is having trouble being positive. If you have read some of my recent posts, you know that I have been dealing with recurring hip pain, and that I had an x-ray that showed a possible pelvic stress fracture. However, the  orthopedic surgeon I saw wants me to have an MRI to rule out a few other things rather than simply dismissing my troubles to the probable stress fracture. One of the main reasons he suggested this is because my hips had been hurting a lot at night which could be a red flag for some more serious conditions. The orthopedist said that if my pain happened to ease up significantly before the MRI date, I could actually cancel the appointment. Unfortunately, the pain is not mellowing — it is getting worse.

I try really hard to not be one who dwells on the what ifs, but sometimes expecting that of myself is downright unrealistic. After all, my body hasn’t exactly proven itself trustworthy in that regard. So what is the big fear that has me hanging out in my recliner in the wee hours with a mug of Sleepytime Extra tea instead of snoozing blissfully in my bed? I am scared that I might have osteonecrosis. A major risk factor for this gem-of-a-condition (of which I am experiencing just about every symptom)  is a history of being on high doses of prednisone. I took up to 80 mg per dose when I was in the hospital during my final UC flare. My doctor assured me that the MRI that I am having this Monday is very good at picking up this disease and that he will let me know as soon as possible if anything shows up.

Until then, I am allowing myself the liberty to freak out a little. The results of my test will probably come back showing that everything is fine and that I am just dealing with a stress fracture. But in some strange way, ruminating over one possible worst case scenario at 2 a.m. on a Friday night is helping my brain cope with the uncertainty — because even in my mind’s wost imaginings, I can see glimmers of hope and the realization that I will be okay regardless of any struggles that lie ahead.

With that reassuring thought, I am going to head back to bed, armed with some mindfulness meditation exercises to help me relax and hopefully get some sleep.

A disappointing setback

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In my last post I wrote: Sitting in the stadium on my 40th birthday, I realized that I still had no idea what was around the corner. Well, today I witnessed how true this statement indeed is.

In mid-March, I started to experience some mild hip pain. It came out of nowhere during one of my most sedentary weeks. I hadn’t been running or hiking much and had mainly been swimming, doing Zumba and doing the workouts my trainer had recommended. I had gone snowboarding a few days prior, but had not pushed it because it was icy and I did not want to fall. I really don’t remember if I took any tumbles on that day–if I did they were insignificant. I thought maybe I had just stressed a hip muscle doing side planks at the gym. In a few days the pain was gone and I did my 5K run. My hip was sore enough to limp after the race, but the next day the joint felt perfectly fine. I took it easy for the next six days doing one aerobics class, yoga, stretches, core work and light weights. The next weekend I was feeling good enough to go on a five-mile trail run, but found that my hip hurt again afterwards. Due to my history of prednisone use and the osteopenia it caused, I decided to schedule an appointment in a week’s time with my doctor to have the hip looked at. I just wanted to be sure nothing strange was going on. I had also been dealing with some knee pain in the opposite leg and figured I would get that looked at too.

In the week or so waiting for my appointment, the hip pain completely disappeared. I went for a mellow three-mile trail run with no soreness afterwards. In fact, thinking whatever had been bugging me had healed up, I even considered cancelling my appointment. As luck would have it, a really busy work load last week left me too exhausted to head to the gym much except for some short core and upper body workouts.

On Monday, I finally got in to see the doctor, and she decided to order some x-rays. At the time she thought it would be okay to stick with my workouts until the results came back the next day as long as I didn’t do anything crazy. I was actually heading to Zumba class when her call must have come in telling me the results of the x-ray. Due to a glitch in my cell phone service, the message she left did not show up on my phone. It was only when I got to work the next morning and saw messages on my work phone and then finally showing up on my cell phone that I got a panicked feeling. I knew if the x-rays had shown nothing, she would not be trying to reach me so many times.

My stomach knotted up as I dialed in to get the various messages. As I heard my doctor’s words, that knot traveled up into my throat and turned into a lump: the x-rays showed a pelvic fracture. She told me to get some crutches as soon as possible and to put no weight on my left leg until I could get in to see an orthopedist later in the week. I cringed when I thought of all the jumping I had done in Zumba the night before… and all the other workouts I had done in the weeks since the subtle pain had begun. And then the tears came as I thought of all the plans that this news so swiftly destroyed and all the progress it had immediately halted. I knew this injury would take a lot of time to heal. My mind raced to all the unknowns and I found myself swallowed by that familiar feeling of being overwhelmed.

As the day went on, I started to feel better once the shock of the situation wore off. My coworkers gave me hugs and made me tea to make me feel better. I called Doug and my Dad on the phone and they managed to cheer me up. I also found out more specifics from my doctor. The fracture is small. It is in the front of my pelvis near the symphysis pubis. Though I really won’t know anything until I see the orthopedist on Friday, from what I gather from the tiny amount of research I have done is that these injuries heal with rest and refraining from weighting the leg during the recovery time. Then there will likely be rehab exercises.

Already my mind is gearing up to get me through this. Now that the tears are out, it is reminding me of all the things I can do like draw, and write and watch the beauty around me even if while sitting under a tree instead of hiking down a trail. In my last post, I also wrote that uncertainty is okay. And you know what? It is. I will find the strength to get through this challenge just as I did during my healing period after ostomy surgery.

Running ahead of osteopenia

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Realizing that today is the Winter Solstice and has the shortest daylight period of the year, it is a fitting time to write about my recent nighttime jogging adventures with Doug. Just about every evening after work, we have strapped our headlamps to our noggins and hit the wide dirt trail near our house. Running by headlamp is a unique experience. There was one night that we saw four glowing eyes in the distance, and I froze in my tracks thinking they belonged to a couple of mountain lions coming down from the mesa near our house. As the animals approached, I was relieved to see that they were happy canines out for an evening stroll with their owner. Another night we saw a coyote trot across the trail, forming a silhouette against the dusky sky. We went right over to examine the tracks he left in the snow. Last night I got dizzy as giant snowflakes were illuminated by my headlamp, giving me the feeling that I was moving forward through outer space. Whether the sky is moonlit or pitch-black, temperatures are balmy or frigid, or clouds are misting rain or dumping snow, we will be out there. Lately, running and other exercise has taken on a new importance.

A couple of months ago, I went for my yearly physical. Because of my prednisone use over the past few years, my physician scheduled me for a bone density test. Within a week, the results came back showing that I have osteopenia, which is weakening of the bones and can be a precursor to osteoporosis. My doctors at the hospital last fall had warned me that this would be a possibility since I had been on such high doses of steroids while trying to get my flare under control, so this news wasn’t a huge surprise to me. Still, it was not something an active person like myself wanted to hear.

I first discovered the amazing healing powers of prednisone about a year after being diagnosed with ulcerative colitis. A bad flare had led me to the ER where I was prescribed a 40mg taper of the steroid. I couldn’t believe how fast it worked. Within 4 days my symptoms completely cleared up. I was even able to climb the 14,255-foot Longs Peak two weeks later. However, foreshadowing what would happen when I took prednisone in the future, my symptoms returned when I got down to 10mg. My doctor added another tapering dose which finally ended the flare up. Over the years, it seemed like each time I needed prednisone, it became less and less effective. During my final flare, even high doses did little to control the severe ulcerative colitis.

As surreal as it can be to run the trail near my house a night, it is even crazier to think that such a small period of time on steroids could have had such a long-term effect on my body. I can’t remember the exact dosages and times I was on prednisone over the years, but the following list provides my best recollection:

  • July 2007- a 40mg taper over about a month’s time and then a few more weeks added when the flare returned
  • August 2008: a 40mg taper over about a month’s time
  • April 2009: a 20mg taper over two week’s time
  • August 2010: started a 40mg taper and ended up being on varying doses of oral and IV steroids for the next 3.5 months, with the highest dose being 80mg

After tallying these times up, it turns out that 6-7 months of my 39+ years of life was spent on varying dosages of steroids. It doesn’t seem like much in the grand scheme of things, but was enough to effect my bones. I know that each of those doses was necessary to get my disease under control at the time, but I am glad that, barring any other health issues, I will not need to take prednisone anymore.

This brings me back to the topic of running at night. Because I am no longer on steroids, my physician thinks that my osteopenia might be reversible with calcium and vitamin D supplementation as well as at least 30 minutes of daily weight-bearing exercise like running. In three years I will be tested again and hopefully it will show less bone weakness. In the middle of the winter when days are short, running at night provides a convenient way for me to get exercise. Though heading to the gym is also a possibility, I have always enjoyed the simplicity of grabbing my running shoes and heading right out my front door.

In years past, I would come up with all kinds of excuses as to why I couldn’t stick to my workout routine in the winter… it was too cold, too icy, too dark and my schedule too busy. But those rationalizations no longer sit well with me. Excuses do not strengthen bones.

Running by headlamp.

Part five in a series: I am thankful for Remicade

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I am thankful for Remicade

“What?!” my friends and family might say upon seeing Remicade on my list. “But you hated that drug!”

Sometimes it turns out that the things we are most thankful for are the same things we didn’t much like when we were experiencing them. So it went with me and Remicade, or Remi, as Doug and I nicknamed it.

I’ll be honest. I wasn’t excited to take this drug. When my GI doctor at the hospital said my options were Remicade (infliximab) or surgery, I was leaning towards the surgery. I found the thought of getting regular infusions of such a strong biologic medication for the rest of my life daunting. But I knew my doctors were right in their advice: I was in no shape for surgery at that time, being very sick, weak, under weight and on high doses of steroids. The plan was to take three infusions, and if all went well, heal up a bit. I would regain some strength and come out of the flare, and then I could see a colorectal surgeon to discuss possible surgical options.

So my short relationship with Remi began. And wow… was it great in the beginning! Within 5 days of my first infusion, the horrible flare that I had been battling for over a month came to an end, and I was able to leave the hospital. But there were signs that things were not going to be so rosy with me and Remi. The day before I left the hospital, I developed really intense throbbing back pain. I had an x-ray which revealed nothing, and I went home thinking it was just pain from being in a bed so long. Over the next week, things got much worse as the pain began to migrate to different joints one at a time and left me incapacitated and literally crying in agony for hours every day. It was crazy-bad and I knew it was nothing I could ever live with. And so, my relationship with Remi ended as abruptly as it began. My future infusions were cancelled due to the reaction, and the pain began to subside as the drug drifted out of my system over the following weeks.

But even though my memories of Remicade are a little traumatic, I know it was paramount in returning me to health. It is the one thing that kept me out of emergency surgery and bought me precious time to heal, taper off the prednisone a bit and see Dr. Brown, who I mentioned in my last post. My story might have turned out so differently without it. I know there are many thousands of  people with IBD and other diseases who rely on this drug and that it has changed their lives for the better. So yes, even though Remi and I didn’t end up getting along, I am extremely thankful for our short time together.