Month: November 2011

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.

Part four in a series: I am thankful for my surgeon

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I am thankful for my surgeon, Dr. Craig Brown

How could I possibly be laughing? I had just been wheeled into the sterile operating room, had scooted over onto the operating table and was now gazing at the big round lights looming above with doctors and nurses in masks poised over me. Wouldn’t anxiousness have been a more appropriate reaction to this scenario than this sudden case of the giggles? And no, it wasn’t medication or nervousness causing me to crack up; it was Dr. Brown’s sense of humor. The room was freezing and he had just said something hilarious about this being my third surgery and how it was supposed to earn me a free cup of soup. Dr. Brown could always tell the funniest story or joke at exactly the perfect time to make me smile and erase my worries for at least a few minutes. And when you are feeling awful and terrified, even small moments of laughter are a big deal.

Dr. Brown’s sense of humor was just one of the many things that made him the best doctor I have ever had. Anyone with a medical worry can relate to the unbelievable sense of relief that comes with simply hearing your doctor’s voice on the phone advising you on what to do next when you are anxious about something. Dr. Brown was always there to help me out with concerns and is the most accessible doctor I have ever worked with. When I had problems, I didn’t talk to his nurse– I talked to him. He called often to check in both at the hospital and when I was back at home… sometimes even on the weekends. The speed at which he returned calls was unbelievable. He even squeezed me in for quick office visits at the last minute when I was concerned about something. I know he had many other patients, so I am still not sure how he did it. Maybe he is really a superhero?

Dr. Brown is most definitely a surgical one. His knowledge and skills are impeccable and I developed absolute trust in his judgment. A month out of surgery, I was having some issues and Dr. Brown sent me over to the ER to get a CT scan. After I had the test, other doctors came in and told Doug and me about the next steps. They did a fine job, but I still couldn’t wait for Dr. Brown to stop back to discuss the results and plan. Somehow it put me at ease to hear about it all from the doctor that I trusted the most.

Much of that trust came from Dr. Brown’s amazing bedside manner. He had the exceptional ability to be both direct and honest in his communication, but also compassionate and kind. He took the time to get to know both Doug and me, and treated us as friends. One day he called up to my hospital room just to recommend that I stroll to a nearby park because it was nice outside.

What do you think?  That was one of the things Dr. Brown said often. He really took the time to listen and get our opinions. He empowered Doug to be a partner in my care and spent just as much time answering Doug’s questions as my own. I can remember sitting on the couch and hearing the two of them talking on the phone about how to carefully pack gauze into a small tunnel that had developed in my abdominal wound. I loved it because Doug had never done anything like that before, but really wanted to do the best job possible. Dr. Brown was always so encouraging and confidence-inspiring.

When I was in the hospital with my final UC flare, my GI doctor told me that if I wanted to pursue surgery, she wanted me to have my operation with the best. I will forever be grateful that the referral sheet she gave me had Dr. Craig Brown’s name on it.

Part three in a series: I am thankful for my family

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I am thankful for my Family

“I think it is going to bust open,” I cried in a panicked voice. A small gap in my incision had formed the day before, and I had just lifted up a dressing to discover that it was now twice as long, much deeper, and oozing copious amounts of drainage. As always seemed to be the case when things went awry for me post-surgery,  it was the weekend which meant I had to wait a couple of days to get in to see my surgeon. Fortunately, my mom, who had flown in from Washington to help me out, was there to keep me from going crazy with worry.

There is nothing like having your mom close by when you are hurting, and her presence comforted me to no end. My mom and I have always been close, and during her visit, it felt just like the old days when we spent a lot of time together. In the two weeks she was here, we managed to have lots of those mother-daughter chats that I miss so much. We also took trips to the mall so I could get my post-surgery exercise and try on fun clothes to help me feel confident about my brand new ostomy. She cooked for Doug and I, and even made a just-out-of-surgery-safe Thanksgiving dinner. Even though I felt poorly, I have the fondest memories of her visit. When she left, I cried because I missed having her here.

My mom and I right before she headed back to WA after helping me out for two weeks post-surgery.

I know my dad wanted to be here too, but he was not able to make the trip out from Washington state with my mom. That was okay… his love was with me. I also knew he was sitting back there worrying about me every second like dads always do. He called every day to check in and let me know he was thinking about me. I was grateful for the sacrifice he made in being without Mom to keep him company for two weeks. I know it must have been a very difficult and lonely period, especially the timing being right over Thanksgiving which is normally a time to be close to your loved-ones.

Still, my family is used to being spread out over great distances. Not only do my parents live all the way out in Washington, but my older brother lives in New York City and at the time of my surgery, my younger brother was living in B.C., Canada. He now lives in New York City too. Though they couldn’t be near, my brothers called often to give me support when I was making tough decisions about surgery and to cheer me up after the operation. It was fun explaining to them what it was like to have an ostomy. I am sad that I hardly ever get to see them, but I feel their love with me all the time. Usually when my brothers and I finally meet up again, even if a year or two has gone by since we last saw each other, we start talking and hanging out like barely a day has gone by. I love that.

Doug’s parents were there for me as well. When I was in the hospital with my UC flare, my doctors would allow me to go for walks outside as long as I was with someone and it was during the daylight hours. Doug couldn’t always get off from work during those times, so his parents would come visit often and take me on strolls outside. Those days in the hospital were so long and monotonous, and I appreciated their visits so much. Once I could start eating regular foods again, they brought gluten-free pretzels and cookie treats to my  hospital room to help me start gaining the 25 pounds I had lost. While I was later recovering from surgery, Doug and I would go up to his parent’s house in Fort Collins on the weekends where I could rest while also getting a change of scenery. In between short walks outside, I would curl up on the couch and watch football games with Doug and his dad, usually dozing off until a loud HOORAY would wake me up and alert me to changes in the score. To this day, whenever I am up at their house, it feels like a place of refuge. I look at those couches and just want to cuddle up in a blanket. So much healing happened there and I am so thankful for the love and support of Doug’s family.

When the incision I mentioned did end up opening due to my body being uncooperative in its healing, I found myself heading back to surgery to have it repaired. The hospital had signs posted that only a couple of family members were allowed in the pre-op area at once, but due to the evening hour and things being slow, the staff made an exception. There around my bed were Doug, my mom and Doug’s parents all cheering me on. I knew my dad and brothers were thinking of me too. At that moment, I felt the incredible love of my family so strongly. They were there for me then and always are.

Part two in a series: I am thankful for Doug

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I am thankful for my husband, Doug

The other morning, I wandered downstairs and started making myself a cup of tea, still a little groggy after allowing myself the luxury of sleeping until 10 a.m. Doug, always the early riser, had already been up for 5 hours and was bouncing with excitement over some news he had to share. He told me to stop what I was doing and go take a look on the computer. There on the screen was a touching post on my blog regarding Doug’s thoughts on my surgery and his plans to contribute the site. I was incredibly moved by his efforts and reminded once again of the continuous love and support my husband gives me. He is always there for me… whether giving me high-fives on a run or hugs on a hard day. Doug proofreads blog posts when he is trying to watch a football game, understands my need for quiet time when I want to be a hermit in my art studio, and is my biggest fan with any endeavor I attempt. I know there are times when I am difficult, yet his love surrounds and comforts me eternally.

Of course, Doug and I have had our share of hard moments and misunderstandings, as I imagine most couples who have been together for a long while do. After navigating the waves and rapids of tough times and conflicts, we always find our love steadfastly waiting on the other side. Oftentimes, the challenges faced in those rough waters makes our love even stronger than before.

Every day, I am thankful for the day Doug came into my life. Over 20 years ago, I stopped Doug in the stairwell at our college dorm. I had seen him in some classes and was looking for an opportunity to talk to him. Not knowing what to say when the chance finally presented itself, I blurted out the most geeky pick-up line ever, “Hey, how do you think you did on that wildlife management exam?” Fortunately, he wasn’t scared away and we immediately struck up a conversation. I must have been pretty smitten afterwards, because when we were done talking I couldn’t even think straight and went down the stairs towards the basement when I actually lived on the 3rd floor.

At that moment in time, could I ever have imagined that the stranger I had just talked to would become my best friend, husband and partner though the greatest times and the hardest? Could I have anticipated all the amazing adventures we would share or the unconditional love we would have for each other? Could I have fathomed the the support and care Doug would give me when I was facing and recovering from surgery? I know now that those were the luckiest few minutes of my life. No words can begin to describe the love I feel for Doug or how grateful I am to be his wife.

Celebrating our adventure on Mt. Belford and Mt. Oxford in July 2011. On a side note, we cannot help accidentally dressing alike after all these years.

Part one in a series: I am thankful for the small moments

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Going through the challenges of the past 18 months has really changed the lens through which I view my life. If I was to describe my new outlook with a single word, it would be gratefulness. With Thanksgiving fast approaching, I have decided to feature a series of posts over the next week on some of the things I am most appreciative of (in no particular order). Starting off the list:

The small moments
I love those little things and moments that remind me that life is absolutely breathtaking and fun. Here are a few that come to mind for this year:

  • A donkey lives at a farm along one of my favorite running routes. It had been a while since I had seen him, but last week I finally made it far enough to reach his pasture. I have probably passed by him around a hundred times since he first showed up in the green field as a baby. I never stop hoping he is close to the fence when I reach that point on my run. He was far away this time, but that didn’t stop me from trying to lure him closer with bundles of grass and my own donkey calls. Though these measures didn’t work, I could still see his spiky mane and light muzzle in the distance and they made me smile.
  • The aspen trees were particularly gorgeous in Colorado this fall. One evening when visiting with some vacationing friends in Fairplay, I stole away from the house alone and strolled across the crunchy forest floor in a nearby grove. The setting sun shone through the semi-transparent golden leaves and made them glow. As I gazed up at their shapes against the blue sky, it reminded me of looking through the most beautifully illuminated stained glass. I leaned against one of the trees and closed my eyes, listening to the sound of the leaves dancing on the branches and smelling the intoxicating aroma of the ones resting on the ground. At that moment, I was purely alive.

  • Last February Doug and I sat in the second row at the Wailin Jenny’s concert– one of our favorite bands. The harmonies gave me goosebumps and the sound of the violin put a lump in my throat. I held Doug’s hand, rested my head on his shoulder and was pretty sure there was no better place on earth to be at that moment than right there.

Little things like this are hiding in each and every day, just waiting to be noticed. Not only am I thankful for the small moments themselves, but also for my ability to see them. I know my life was full of such moments before, they just shine so much more vividly now.

Check in tomorrow for the next post in the series on the things I am thankful for.

All seems well surrounding my stoma

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I am relieved to report that when I woke up this morning, the pain I was experiencing around my stoma yesterday was gone. As it was my appliance changing day, I showered without my pouch and wafer on and palpated the area around my stoma really well. Everything felt fine–no pain, swelling or weirdness of any kind. Whew! I am confident now that what I was experiencing was just a sore muscle.

It is interesting that normally I get a bit excited about sore muscles the day or two after a workout. It is usually a sign that I worked hard during an athletic activity and took things to “the next level.” However, when I feel such soreness in the muscles around my stoma it doesn’t make me feel good; it makes me fearful. I don’t know how to get over that. I guess whenever those muscles get sore from a workout and then the tenderness resolves as it did today, I will get more confident that all is okay.

I did end up going out for a run today. I still felt a few minor twinges of soreness around my stoma as I was bouncing down the trail, so I kept the pace extra slow and only ran for 30 minutes. Tomorrow I work and have my local ostomy association monthly meeting in the evening, so I will take another rest day from running. Hopefully by the following day I can start going out each evening again. I am finding that out of all the activities I am returning to after surgery, running is coming back to me the slowest. Even short runs tire me out so much more than hiking all day up big peaks with a pack did over the summer. I hope that this starts to change this winter. I am really yearning to get back out on some of my favorite trail runs, but they would still be too hard at this point. Didn’t I just tell myself to be patient yesterday? Darn, I already forgot!

When to be patient? When to push?

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It is obvious when reading my blog that I am happy with my ostomy and super thankful for the surgery. However, there are still days on which the fears capture me. This morning when I woke up, my abdomen was unusually sore to the touch in about about a 3-inch perimeter around my stoma. It has been a while since I have had ostomy-related pain of any sort, but I was instantly taken back to those days after surgery when I was desperately trying to sort out what was normal pain and what might be something serious. I had a short period of intense anxiety issues after my surgery due to some complications (I hope to write a little more about this in a future post), and this morning I was back in that place for a moment.

My stomach clenched up and my head spun in a storm of worry thinking about all the things that the pain could be from. I knew the pain had nothing to do with a blockage, my output was completely normal in consistency and quantity. In a moment of rational thought, I remembered all the exercise I had done during the week. Two nights ago, I had upped my workout at the climbing gym. It was the first time I had ventured onto more vertical routes– still easy but slightly more strenuous than the slabby ones I had been doing. This week I also went from running every few days to running 30-45 minutes each evening. The runs I had been doing previously were short mileage-wise and slow, but last night, I felt carefree and energetic, and I ran faster than at any time since surgery. It was invigorating to fly down the trail at a brisk pace and with no rests. I couldn’t wait to go again today.

But now this pain. I really hope I didn’t overdo anything and cause injury. Tomorrow is my appliance-changing day, and I will get to take a better look around the area. In the meantime, I am actually relieved that the muscles on the other side of my abdomen are starting to hurt as are my calves. That means that the pains around my stoma are likely nothing more than sore muscles too. I am going to guess that they just came on sooner and fiercer because that side is much weaker. I canceled my run for the day and went for a speedy walk instead.

One would think that a year after surgery, especially with all the hiking I have done, that my body would be ready for such a workout. When I am feeling so well and healthy, it is incredibly difficult to know how hard I can safely push myself. The little pieces of colored tape marking even the 5.7 rated routes (an easy-to-moderate grade) at the climbing gym keep tempting me, as do the steeper trail runs. How will I ever know when I am ready for these? I wish that there was some kind of manual that said 365 days after surgery you should be able to do A, B and C. Seeing that there is a much higher likelihood of going downstairs and finding a sloth sitting at my dinner table holding a fork in his three toes than acquiring such a publication, I will have to continue to proceed through trial and error.

I hope tomorrow when I poke around my stoma that everything feels great, and that I can slip on my running shoes once again and hit the trails… albeit with the pace turned down a notch. Patience, Heidi, patience.