Tag: colon-removal surgery

A run to Horsetooth Rock: a day of ups and downs (feat. new video)

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When I got out of the car and looked at the trail slicing across the hillside, I was intimidated. It started out steep right from the start, and I knew it wouldn’t ease up until it reached the summit of Horsetooth Rock. I didn’t have much faith in my ability to do a run of this magnitude since my longest run to date after my ileostomy operation had only been around 3 miles on flat terrain. This trip would be 5 miles with over 1,400 feet of elevation gain. Normally, I would have built up to a run like this, but we had decided to do this on the spur of the moment. In fact, the trip was so spontaneous that I didn’t even have any of my usual trail running gear such as my CamelBak water pack. Fortunately, Doug’s parents had a water-carrying waist pack to loan us which Doug carried.

Running, even on flat terrain, had been one of the harder fitness activities for me to get back into. Since starting up again last summer, I always became fatigued and seemed to be progressing at a turtle’s pace. As I started to run up the hill, I fully expected to get extremely tired. I don’t know if it was the gorgeous scenery or the fact that I was elated to be doing my first real trail run since surgery, but I  felt amazing as I ascended the trail and didn’t want to stop. I bounded over roots, up rock stairs and just kept going. I did get some rests because the trail was very icy in spots, which necessitated some walking to negotiate the terrain. However, had it been dry, I think I would have been able to run almost non-stop. I felt that good.



The last 200 feet required scrambling up rock, and then we were on the gorgeous summit. I had made it! The descent was tricky due to all the ice, and I ended up scooting down on my butt in a few sections that were really dicey—or on my belly like an otter just for fun. I was so happy when I got back to the car. I could not believe what I had just accomplished.

My feeling of elation was short-lived however. When I got home, I logged into my Facebook account to see if anyone had commented on a post I had made about the run right before I left. I also checked my friend Charis’s page to see what she was up to. She had had permanent ileostomy surgery in September, and had just made a list of New Year’s goals that she was excited about accomplishing with her renewed health (read more about these experiences at her Facebook page and website.) I was anticipating an update about a workout she had accomplished or something else cool that she had done, but instead found a post sharing bad news.

At the exact time I had written on Facebook before my trail run departure, Charis had written a post about waking up with intense abdominal pain. In the time I was jubilantly running up the trail, she had realized she likely had an obstruction. As I got back to the car and then headed back home satisfied with the morning, my friend was in her vehicle traveling to the ER and facing fears and uncertainties.

The news sent my emotions reeling and the tears welled up. One of Charis’s resolutions for 2012 was to not have to go to the hospital, and here she was spending the second day of the new year in that exact place. I couldn’t believe this was happening. I wished so hard that she could get out of that hospital fast and get back to doing the things she loved. However, as the days progressed, my friend discovered that the obstruction, which had since passed, had happened because her bowel was narrowing and possibly had a twist. She had to head back to surgery to get it resolved. I was so angry that she had to go through this all. It wasn’t fair. She had already traveled such a long and difficult road with this illness.

I guess not one of us knows what lies ahead with our health. All we can ever do is live life to the fullest and celebrate during those moments when we are feeling well, and stay positive and brave through the times of pain and uncertainty. Charis is a shining example of this. She is one of the strongest people I know, and her positive attitude and fortitude during trying times is inspirational. I know she will get through this latest surgery, heal up and work towards her goals at a feverish pace. As she does, I will be right there cheering her on through all the ups and downs.

The New Year: looking back and looking ahead

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Happy New Year everyone! I hope 2012 brings health and many blessings.

As I set out to write my first post for 2012, I couldn’t decide if it would be best to look forward and write about my goals for the coming year, or if it would be better to reflect on highlights from 2011. As you are about to find out, I like to juggle a lot of things. I might as well keep up with that tendency and write about both in the same post!

I have never been a fan of creating a formal list of New Year’s goals. I have a lot of interests and love them all… everything from activities at work, working on projects involving ostomy awareness, artistic endeavors, fitness goals, to trips Doug and I want to go on. I get a little frustrated when I try to make a formal goal list because there is so much I want to do! I soon discover that it is probably unrealistic to accomplish it all. That said, there are a few things that are a high priority this year.

  • I want to do a better job of keeping in touch with my friends and family. To all my family and good friends who are reading this: did most of  you get a Christmas card from me??? (Rhetorical question!) I didn’t think so. The same busyness I mentioned above sometimes keeps me from answering emails, writing or calling people, and spending time with my loved ones. I want to be better about making sure these people know how much they mean to me.
  • I want to continue sharing my thoughts on this site. No need to elaborate much more on this one. I have a huge passion for showing people what is possible after ostomy surgery and hope to keep writing and creating videos.
  • I want to get back into working on art. My creative endeavors like drawing, painting, blockprinting and keeping illustrated journals are also big passions for me, and I keep another website covering some of those pursuits. If you visit the site you will see that my last post was completed in August. Not so good. And there is a printmaking project that has been gathering dust on my art studio table for over a year. Art needs to be part of my life again. I realize that may mean a few less posts here, as there are only so many hours in a day, but I am going to try to balance both…. all while working and doing outdoor adventures and exercising. Whew! It is going to be a busy year.
  • I want to go on a climbing road trip.  Two weeks, camping near the crags, waking up and firing up the camp stove, climbing routes all day and then coming back to camp to relax with a beer only to do it all again the next day — that is what I am longing for this year. When Doug and I were in college we spent a summer living out of the back of our truck and traveling the west, climbing pretty much non-stop. I am psyched to get back to that, even if it is only for a couple of weeks. I wasn’t strong enough for this type of trip in 2011, but I will be in 2012 and look forward to doing it with an ostomy!
  • I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December. I am only up to running about three miles right now. However, I have almost a year to train and it seems like I am finally getting off the plateau I have been stuck on. I am feeling so much stronger on runs lately and plan to inch up the intensity a bit in the ensuing weeks.

Now to rewind and reflect on 2011– the first full year of living with my ostomy. There have been so many highlights this year and most of them have already been covered in posts. Great times with friends and family, fun outdoor trips, stellar surgery results– I could write a book on all the amazing things about this year. To keep this post from becoming as long as a large novel, I will cover just a few major categorical highlights. Here are the best of the best for 2011:

  • Discovering my body’s ability to heal. There are many, many examples of this, but there is one that sticks in my mind the most.  Ten weeks after my initial surgery, I had to have an operation on my  incision, and my surgeon ended up removing some sutures that my body had reacted poorly to and then fixing things up. The resulting wound had to heal from “the inside out” with the help of a wound vac. Seeing that wound for the first time was a surreal experience. It was 13 cm long by about 3 cm wide and another 1 cm or so deep. I had to detach mentally to view it, and when I did, it reminded me of an interesting dissection project from biology class. Actually, my scientist-side was pretty fascinated– it was certainly not a part of me that I had ever gotten to see before (and hopefully never would again). Right before my eyes I could see my abdominal wall and the layers of skin tissue on the sides of the wound opening. What happened in the following six weeks was even more captivating (okay… except for the pain of the wound vac which was really bad for me at times). The wound filled up with healthy red granulated tissue and then sort of zipped itself up from top to bottom. How did my body know how to do that?  It was absolutely amazing! I thought I would end up with a heinous scar, but it actually looks pretty great considering the wound that was there before. Now whenever my body is healing, even from something as small as a pulled muscle, I think about that experience. The body’s ability to heal is truly amazing and something that 2011 will always remind me to celebrate.
  • So many firsts! After I was sick for a while and then started to feel better, life just got so exciting! In the beginning, the firsts are so small. There was the first walk after surgery, the first time output came out of my stoma, the first appliance change. Things progressed from there… there was the first time I got brave enough to eat a peanut, the first try at putting my favorite jeans back on, drinking my first beer. Then there were all the athletic firsts… snowboarding, hiking a 14er, running, climbing. I am still hitting firsts all the time. Yesterday was the first time I climbed a 5.9-rated route at the gym. It was a delicate climb that required more balance than brute muscle power. Still, it was the first time that I felt like I was back in my old climbing body, doing some of the more athletic climbing movements that I used to. What a way to end 2011!
  • A new outlook. I write often about how being sick and going through major surgery has changed the way I view things. This has been one of the biggest blessings of 2011. I find examples of this new outlook in even the smallest moments of my life. For instance, a few months ago I was getting ready to lead a campfire program at work. It had been a long week and I was feeling tired and “grumbly” and not into it. Suddenly I remembered how much I missed my job last year and how much I longed to be out in the parks leading programs again. I immediately changed my attitude, got excited about the program and fully seized the moment. I got up on stage and shared information about all the amazing changes animals were going through to prepare for winter. I told stories, sang goofy songs with the kids and had one of the best programs ever. On the drive home I was overcome with emotion because it had felt so good to be out there again doing what I love. Life had given me back all I had ever hoped for and here I had been sulking just a few hours earlier. It was a big reminder to live with a spirit of thankfulness for what I had. Gratefulness, the ability to live more in the moment, the capacity to deal with uncertainty and change– these are just some of the ways I have changed for the better I have made in 2011.

As soon as I am done with this post, I am going to go for a run. I love the thinking-time running gives me, and inevitably, I always start composing blog entries in my head. I am sure as my feet hit the pavement and my thoughts drift off, I will think of hundreds of other things I could have included in this post. Suffice it to say that it has been an incredible year of recovery, growth and change. I am so excited to see what the next year will bring!

A winter ostomy adventure (feat. new video)

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After a whirlwind summer of camping, hiking and backpacking just about every weekend, outdoor adventures slowed down for the two of us. Snow and cold returned to the high country and the ski areas weren’t open yet. Once they did open, the snow was abysmal and I didn’t want to risk getting hurt by boarding on icy slopes. We were running and rock climbing (indoors) regularly, but we were not heading out into the mountains. At first, this slow down provided a much-needed break from the exhausting pace we had been keeping up over the warm months. It was fun to stay home on the weekends for a change and watch movies, sleep in and make gourmet breakfasts, and to draw, sew and do some of the other quiet hobbies I enjoy.

However, by December, I was antsy. The period of rest had been great initially, but now I felt like I was spending too much time away from the backcountry. Here I was finally feeling strong and healthy again, and I was sitting around at home weekend after weekend. Last year at this time I would have done anything to be able to go outside and climb a peak on the snow-covered tundra. Now that I was able,  it really bothered me that I was not seizing the moment to do so. It was time to get out of the house and back into the high country. As I began to research possible summit ascents, one of my friends suggested that Doug and I try 13,427′ Grizzly Peak– a climb she and her husband had done several years ago in the middle of winter. It sounded perfect; now we just had to wait for a good weather window.

Favorable conditions for hiking above treeline do not present themselves very often in winter. Frigid temperatures and heavy snows can make the high peaks very inhospitable places. The safest winter peak ascents, including Grizzly Peak, involve staying on high ridge tops to avoid avalanche danger.  However, these places are extreme weather-wise. The high winds on  ridges can expose one to dangerous wind chills and, when mixed with snow, can create whiteout conditions that make the easiest hikes impossible.

I began to watch the forecasts in hopes that one of our days off from work would line up with good weather. Finally, the magical combination presented itself: a Sunday predicted to be 40 degrees at 11,000 feet with cloudless skies.

I knew that dealing with my ostomy on a winter summit attempt could be challenging.  Even when the temperatures are above freezing in the mountains, it is almost always windy which makes the air feel absolutely frigid. Because of this, I decided to use closed-end pouches instead of drainables. I knew that this would help lessen my exposure to the elements since swapping out closed-end pouches is super quick. This was a wise decision as the conditions on the hike ended up being far colder than we anticipated. My latest film covers this excursion and shares some of the important things I learned in managing my ostomy in cold temperatures.

 

There are times during the winter when it feels so good to just stay home and cuddle up with a book and some hot chocolate. But Doug and I love balancing out those slower-paced moments with adventurous trips into the winter backcountry. Yes, these excursions are often fraught with weather uncertainties, numb toes, wind-burned faces and, now, cold fingers from changing ostomy pouches, but they are also filled with immense beauty. It is during these times when life feels most vivid and when our best memories are often made.

Happy holidays everyone! (feat. new video)

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Homemade lasagna is about to come out of the oven, my wine glass is full, and my body is feeling wonderfully worked out after spending a glorious Christmas day flying down the slopes on my snowboard. Doug and I quickly put together a little Christmas video covering the adventure (and a special thanks to my hubby for editing it all during the short commercial breaks during the Green Bay Packers game). Basking in the Colorado sunshine, hanging out with my sweetie and being elated to do something I love so much became the perfect equation for the silliness in the video. It was an amazingly fun day, and I am blessed to be feeling so well again.

 

I hope you all had a joyous holiday season with those you love. I also send my thoughts out to those who are still in the midst of illness or recovering from surgery. May the upcoming year bring bright days for everyone.

Healing the mind as well as the body

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I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.

However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.

These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.

Continue reading “Healing the mind as well as the body” →

Hand jams and high steps: outdoors on the rock (feat. new video)

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Five days ago at our local crag, I stood at the base of a short, easy (5.6) route, looking up and assessing the possible moves and thinking about how my body might handle them. This outdoor climb (on real rock!) looked easy and had obvious holds, but it was still much different than the indoor routes I had been training on. In the gym, the wall is peppered with holds and any time one of the routes (marked with colored tape for various difficulty levels) would get too hard for me, I would simply grab a hold marked with another color to make it easier. It was a different world outdoors. Here, the holds were spread out with far less to choose from than in the gym.

Until that moment, the last time I had been outside on the rock was in July of 2010. Doug and I had taken a nine-day trip to a climbing area called City of Rocks in Idaho. Amazingly, this trip fell right in the middle of the only true remission I ever had in my 10-year history with Ulcerative Colitis. I remember walking to the outhouse in the dark to administer my maintenance dose of Rowasa and wondering if I even needed it. I would check my toilet paper whenever I went to the bathroom, certain there would be blood on it. Astonishingly, for the first time in a very long time, it looked normal. Every time I got to the top of a cliff on that trip I remember pondering how amazing I felt. I seriously thought I might have somehow been spontaneously cured.

Enjoying remission on top of a route at the City of Rocks in July 2010. This was one of the last climbs I did before falling ill with the final severe UC flare that led to my surgery.

Sadly, that joy didn’t last. Two months later my final raging ulcerative colitis flare came on and I found myself lying in a hospital bed instead of sitting on top of a cliff. When I was ill it took a ton of effort just to bend over and pick something up off the floor. I sometimes thought my climbing days were over for good.

But they weren’t. One of the main reasons I chose to have a permanent ileostomy surgery was because I felt that it would give me the best chance of returning to climbing. Still, it was a long road to get back to the rock, and the strenuous nature of the sport made me apprehensive and cautious. It took a lot of time to heal, get strong (I’m still working on that) and gain confidence, but the moment had finally arrived to attempt my first outdoor route after the operation.

Many months had gone by since I last sat at the base of a cliff lacing up my rock shoes in anticipation of an ascent. This time, as I began to climb, I barely recalled what it felt like to dance up a route with the sun warming my back and the wind gently blowing my hair against my face. I had forgotten how amazing it was to have my mind focused only on the cracks and crimpy holds in front of me and nothing else. These things had once been so beloved and familiar to me, and though they now felt foreign, I could sense my body waking up and remembering with every reach, jam, and high step. My passion for climbing had been rekindled, and this was only the beginning.

If you’re new to Ostomy Outdoors, don’t forget to check out all the other adventure videos we’ve put together for you.

Part eight in a series: I am thankful for online friends

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I am thankful for online friends

I am not sure what words I typed into the search engine to stumble upon Charis Guerin’s Inspire.com website, but it was one of those lucky moments of fate. I was just entering a horrendous flare up of ulcerative colitis, and was surfing the internet to read about the experiences of people who were going through the same thing. As I dove into the story that flashed up on my screen, I could not believe how much I had in common with the young woman who wrote it. She was strong and active and into fitness just as I was. At the time, she even had a job that very similar to mine where she worked on kids’ programming– only at a historical site instead of a natural area. A year before, an ulcerative colitis flare had hit her hard… so hard that she had gone through surgery to remove her colon.  I was so inspired by her story that I decided to contact her.

This was the first time in my life that I had reached out to a complete stranger about a health issue, and it felt really weird to pour my heart out and list all my unpleasant symptoms to someone I did not know. I can’t remember what I wrote exactly, but I am sure it must have sounded like a pretty desperate plea for help because within a short time, Charis emailed me back. As my disease quickly worsened, and I found myself in the hospital facing the possibility of surgery, Charis’s encouraging emails and phone calls helped get me through some very uncertain times.

As I continued to write Charis over the course of the year, I discovered that she was facing hard times herself as her j-pouch failed and she recently decided to undergo permanent ileostomy surgery. We have supported each other through all these health twists and turns and her friendship means a great deal to me. I hope I can be there for her during these tough times as she was for me. Right in the middle of of all these big challenges for Charis, she has started a successful new Facebook project called FullFrontalOstomy to help those with IBD and/or ostomies reach out to each other. This speaks volumes about how strong and inspirational she is. I hope that someday I get to meet her in person. What do you say, Charis? The 2012 CFFA Team Challenge Half Marathon or maybe at the UOAA conference in Florida?

Since reaching out to Charis, I have made so many more amazing friends through the internet and continue to every day.  I am extremely thankful for online communities where people can reach out, connect and get support. These forums, web sites, Facebook pages etc. allowed me to meet so many other people who were going through the same challenges and who were willing to talk openly about them. As an ostomate and/or person fighting IBD, you need a community where conversing about output or gas-filled pouches is as easy as discussing the weather. You need a place where talking about a new ostomy product feels as natural as talking about the latest release by your favorite band. You need to surround yourself with people who don’t blush when the topics of urgency, diarrhea or bloated and painful stomachs come up. Without online friends to talk about these things with, life can feel very lonely. I am thankful everyday that the internet has allowed people with ostomies and/or IBD to find each other and converse so easily.

With this post, I wrap up my series on the things I am thankful for. Of course, there are oodles of other things that I am extremely grateful for that I have not listed. Still, when I look over the list of the things I have written about over the last week, I quickly realize that the vast majority of the posts are about people. This isn’t surprising. When it comes down to it, people often make the biggest positive impacts in our lives. I will be forever thankful for the countless ways that these individuals, and so many others, have changed my life for the better.

Happy Thanksgiving!

Part seven in a series: I am thankful for my friends

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I am thankful for my friends

Friendship can be such an intangible thing. It is the warmth that surrounds you when someone you care about is around. It is the spark that ignites when you realize you have things in common with another. Friendship is the security of confiding in someone you trust or the comfort in knowing a person is always there for you. When I was in the hospital sick and at home recovering from surgery, I felt friendship everywhere:

It lived in the cards and flowers that filled my room and the funny pictures my friends drew me.

It was found in a visit from a friend who, after getting a desperate email from me the day I found out I might be facing surgery, drove across town on her lunch break to show me her ostomy. It was also in her long and thoughtful responses to several more frantic emails in the ensuing weeks.

It waited in a care package of chocolate and other goodies sent across the country from friends I had worked with long ago and hadn’t seen for years.

Friendship resided in the emails that poured into my inbox. Many of these messages were never returned because I was so exhausted. That didn’t matter; my friends just kept sending more.

It was found in the conversations I had with friends who called to cheer me up, or left in voice mail messages when I couldn’t answer the phone because: A) I was sleeping, B) I was talking to a doctor or nurse, C) I was in the bathroom, or D) I was sleeping some more. (Ditto on the statement above about not always returning those messages, and double ditto on my friends leaving more anyway.)

It sat in the stack of People and US Weekly magazines a friend brought me so I could laugh at the ridiculous stories and focus less on being sick.

It demonstrated itself in the bravery of my friend, who is a world-class germaphobe and hates to even touch doorknobs, taking a trip the eighth floor of the hospital to see me. Twice. And she even ate dinner with me in the common area in my hospital wing on one such visit.

Friendship existed in the moments when my friends understood that I was too tired to see them at all.

So yes, friendship might be intangible, but my friends made sure there were tangible signs of it everywhere to help me make it through the hard times. I am so incredibly thankful for my friends… they mean more to me than my sometimes-quiet nature would ever reveal. I don’t think I could have made it through all this without them.

Purposely missing from this post is a mention of the friends who I may not have met in person, but have developed lasting friendships with online. Stay tuned…

Part six in a series: I am thankful for understanding coworkers

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I am thankful for understanding coworkers

One of the hardest things about facing ostomy surgery was knowing I was going to be away from the park where I work for a long period of time. I had already missed several weeks due to my ulcerative colitis flare, and now I was going to be out for roughly eight more weeks. I work with a small group of people, and I knew it was going to burden my coworker’s schedules to fill in the gaps my absence would leave.

However, I had no sooner mentioned surgery than everyone was offering to cover for my programs and even switch their days off. One thing I was going to miss was a holiday festival for young kids that I usually coordinate. I tried get as much done in the brief period of time I returned to work before surgery, but ended up leaving many loose ends for my coworkers to sort out. When I was in the hospital, they sent a photo of themselves preparing for the event. They were all sporting funny faces with craft supplies hanging off their ears and trying to make it look like absolute chaos. But it wasn’t. My coworkers did a stellar job carrying out the event, and filled me in on all the details via email.

Some might prefer to not get emails from work while recovering at home, but that wasn’t true for me. I love my job and missed being there. I wanted to hear about the amazing stars that were out at the astronomy event at the park or the cool shelters the kids built at one of our nature-play programs. My coworkers frequently sent me notes to say hi, pass on well-wishes from volunteers, ask how I was doing and fill me in on all the latest happenings. It made me very happy and reminded me of the normal world that I would soon return to.

When I did go back to work and had serious lifting restrictions, my coworkers went out of their way to help. It was a bit of a pain asking for assistance with lifting every little thing, but they were always willing to move tables, carry taxidermy animal mounts up from the basement, and haul around boxes of program supplies for me. I loved it when I was carrying something really light and they still ran over to grab it from my arms.

Another difficult thing with IBD and ostomies is knowing how much information you want to share and with whom. This seems especially true at work. When I was away from my job with my ulcerative colitis flare and for surgery, I didn’t tell my coworkers much about my condition due to to fear of the stigmas surrounding it. In retrospect, I realize my reluctance to talk about it made things not only harder on myself, but also more difficult on my fellow staff members. The park where I work has a large crew of caring volunteers, and many of us are good friends. During the time I was in the hospital, these volunteers wanted to know what was going on, yet I had only given my coworkers rather nebulous facts to pass on. (I said, I have an auto-immune stomach condition. Can’t get more nebulous than that, right?)

I had told my boss a bit more information, but had asked him not to share it. I am sure it was an awkward time for everyone, and one of my few regrets surrounding my UC and surgery experiences is that I wasn’t more open about it at work from the beginning. It was silly of me not to share more. After all, if I were getting surgery on my heart, knee, or back, I certainly would have told everyone without a second thought. I work with a very compassionate group of people who would have been completely understanding and supportive. I am glad that they were so patient with me as I processed the events and finally became comfortable talking more openly. I am thankful to work with such a great group of people.

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.