Fibroid fun!

Yesterday I had a serious case of deja vu while driving in for a surgery. I vividly remembered a morning four and a half years ago when my hubby and I pulled up to the hospital for my ostomy operation. I had been in a tenuous remission after a severe flare had hospitalized me for a couple of weeks. I was so relieved that nothing had gone wrong and that I was actually going to have the surgery while in a fairly healthy state to rid myself of an organ that had been ruining my life. I was so eager that I wanted to run into the hospital and jump on the operating table.

This time I was equally excited. Though I wasn’t anticipating giving an organ the boot, I was excited to rid myself of some pesky uterine fibroids that had been making my life very miserable. Just like with my ostomy operation, I was so happy when we pulled into the hospital and realized that nothing was going to get in the way of my surgery. Life happenings and a really busy work schedule over the past few months had made scheduling the surgery difficult. To top it off, two weeks ago I came down with a horrible respiratory bug and fever that also resulted in developing viral-induced asthma. There was a chance I was going to have to cancel, but I did everything I could to give my body a boost. I used sinus rinses and warm compresses, took Musinex and my asthma medications religiously. Most importantly, I rested and slept a ton. Three days before my surgery, my illness cleared up and I got the go-ahead from my doctor to proceed. Whew!

I am happy to be in pre-op and ready to rid myself of the fibroid mini-beasts likely lurking in my uterus.
I am happy to be in pre-op and ready to rid myself of the fibroid mini-beasts likely lurking in my uterus.

So what led up to such eagerness over this surgery? Last summer my periods started changing. They were becoming subtly more painful with light bleeding mid-cycle. By December, both these issues worsened exponentially. I had never experienced many menstrual cramps in the past, so I wasn’t exactly sure what “normal” ones were supposed to feel like. However, my gut feeling told me that the level of pain I was experiencing was unusual and that the heavy bleeding certainly warranted some investigating.

I saw my doctor in the beginning of the year and it was determined that fibroids were likely the cause of my issues. I knew I had some. One–a subserosal type that grows on the outside of the uterus– was seen during my ostomy surgery. That one and then another had showed up on a pelvic MRI that I had to investigate hip pain a couple of years ago. A follow-up ultrasound showed that the second fibroid was probably an intramural type which grows within the uterine wall. Back then, I didn’t worry about these as they weren’t causing any symptoms.

Now that I was experiencing worsening problems, I was scheduled for another ultrasound. This test showed that my older fibroids had probably been joined by a new buddy and that it was likely a submucosal type. These rarer fibroids are found on the lining of the uterus and can cause intense pain and bleeding. Yay! How lucky my uterus was to possibly have three types of fibroids. My body always likes to go big!

Unfortunately, I am not a good candidate for a full on hysterectomy due to my ostomy, possible adhesions and the complications that could be involved. That type of surgery would only be done on me as a last resort. Fortunately, there was an option to at least investigate  my uterine lining and–depending on what was found–try to remove and submucosal fibroids that were most likely causing the bulk of my issues. This procedure, called a hysteroscopic myomectomy, would be a minimally invasive and done under general anesthesia. A camera is inserted through the cervix and any offending fibroids or polyps in the uterine lining are removed.  If all went well, I would only have to miss a couple of days of work while healing. I decided to have the procedure done.

Of course I was nervous about some aspects of the surgery. One unlikely but possible complication was perforation of the uterine wall. If that happened and it was bad enough, there was a possibility of needing an emergency hysterectomy through my mid-line incision. I wondered what that would that mean for my ostomy. I have a wonderfully skilled, thorough and caring gynecologist that I definitely wanted to do the procedure. However, he didn’t do these surgeries at the same hospital that my colorectal surgeon works out of. I was told that if something went wrong and I needed an emergency hysterectomy, a general surgeon who was experienced with ostomies would join in the surgery. The thought of putting complete trust in another surgeon to work around my ostomy was difficult. I had to let go of those fears and hope for the best.

In the end, everything went perfectly with the procedure. Two submucosal fibroids were removed and sent to pathology. My doctor is optimistic that this will fix the problems I have been having. There were no issues related to my ostomy either. I emptied my pouch before heading to pre-op. My surgery took a little less than an hour and I spent a couple of hours in post-op recovery. When I woke up my ostomy pouch was still pretty much empty… probably due to the fact that I wasn’t allowed to eat or drink for eight hours beforehand. Though I knew complications were rare, it was such a relief to wake up in post-op and see my belly intact! My surgery was scheduled for a Friday so that I could recover over the weekend, and so far my post-surgical pain hasn’t been too bad. I may even feel up to going to watch my hubby run the Colfax Marathon in Denver tomorrow!

I am almost ready for discharge, but not before enjoying a hot cup of tea to go along with my dilaudid. I think I went through at least a dozen warm blankets during my time at the hospital. Can I please request this service for home?

As I was experiencing all that deja vu on the way to the hospital yesterday, I was excited for the pain relief this surgery would hopefully bring, but I was definitely scared too. Just like with my elective ostomy surgery, I wondered am I really in bad enough shape to warrant having this done?  With any surgery, even the more minor ones, there is an element of the unknown and also the vulnerability that comes with putting complete trust in a medical team. It can make it hard to take the leap… even when health issues are taking a toll on your quality of life. In this case, I was willing to take a chance to be free from misery. Here’s to hoping the surgery did the trick!

Three years!

When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary.  As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.

When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.

Contemplating the amazing journey from illness to health as I take a break on my trail run.
Contemplating the amazing journey from illness to health as I take a break on my trail run.

Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.

When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?

Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!

My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.

So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for me.

Happy birthday Wilbur the stoma!

Feasting on Thai food post-run.
Feasting on Thai food post-run.

Guest post by Bo Parrish: YOU’RE NOT DONE…

One of the things I love most about blogging is meeting others who have gone through ostomy surgery and are out there overcoming fears, living their dreams and making a difference in the lives of others. I recently had the pleasure of becoming acquainted with such an individual when Bo Parrish emailed me about doing a guest post on the blog.  Bo is a semi-professional, nationally sponsored triathlete who shares his story through his website www.conqueryourcomfortzone.com. He is also the recipient of the 2012 Great Comebacks® South Region Award. Bo’s message of embracing change resonates with me and his guest post is a perfect fit for Ostomy Outdoors. Enjoy!

You’re Not Done
By Bo Parrish
Can you imagine a life other than the one you are living right now? Is there something about you that you wish were not so? Does the thought of change excite or terrify you? Well, however you may feel about your current situation I can assure you that it will change! The road that you are currently traveling will indeed change in some way, form or fashion. Life has a funny way of working itself out with or without your liking. My life is a testimony to the incredible blessing that change can and will bring. I wish I could say that I chose it, but it chose me and I am extremely grateful!
SUB-TOTAL COLLECTOMY SURGERY CLEVELAND CLINIC, APRIL 2007
SUB-TOTAL COLECTOMY SURGERY
CLEVELAND CLINIC, APRIL 2007
I grew up a fairly normal kid in a small town. I never had to deal with adversity until my teenage years. You see, Crohn’s Disease chose me and my life would take a dramatic turn. I spent the better part of the next 14 years in a vicious cycle of stomach pain, fever, weight loss, anemia, bone loss, and social anxiety among others. I was the sick kid, the one who sat on the floor outside of the classroom so that I might make it to the bathroom multiple times throughout the day. I was the one who missed the prom and the parties for fear of not being able to find a bathroom. My entire freshman year of college was spent in the medical clinic while discovering that alcohol absolutely wreaked havoc on my comprised digestive system. Life was miserable and I knew of no other alternative. This continued into my early adult years as I transitioned into the workforce. I was sick more often that well and my employers quickly discovered my lack of productivity. All I could think about was making it through the day to return home to the comfort of my bed. My doctors recommended surgery to removed my diseased bowel, but the thought of a “bag” absolutely horrified me. I told myself that any amount of pain and suffering was better than a body-altering, image-wrecking surgery. As I mentioned before, life has a funny way of working itself out.
In the fall of 2006, I found myself in a rural emergency room in Canada in the hands of general surgeon. My large intestine had ruptured and my body was becoming septic. If I were to continue living, surgery was my ONLY option. I was on the verge of slipping into a coma before giving the doctor consent to operate. The next six weeks were pretty much a blur, but I was alive. My recovery was the farthest thing from comfortable that I can describe. I had a hole in the middle of my body and my midsection had been carved up like a Thanksgiving turkey. BUT….I WAS NOT DONE! Eventually, I started to recover my strength and shortly after my surgery I was introduced to the sport that I credit with my current athletic success. Triathlon gave me confidence; it gave me conviction that my life would be better. In the seven years since my life-saving surgery I have become an endurance athlete and have married my running coach. I have competed in Ironman events all over the world and raced in two world championships. I have learned how to eat and fuel my body for athletic performance. Most importantly I have gained a keen sense of gratitude. It is now my passion to encourage and support others who have recently faced or are anticipating ostomy surgery.
MUSIC CITY TRIATHLON, JULY 2012
MUSIC CITY TRIATHLON, JULY 2012
I know it sounds crazy, but life begins with your ostomy. If only I could have known how sweet life could be on the other side of surgery, I would have gladly volunteered. My biggest problem was my attitude. I was sure that my life would be forever ruined by an ostomy. I would never be able to take my shirt off in public. I would never find a woman who would be attracted to me much less get married. I would lose my ability to to be transparent. Oh, how ridiculous I was! Change is such a wonderful thing and in our particular application of an ostomy, it can be the difference in that other life you wish you could live. Life is too short to suffer without hope. Please, please, please don’t allow yourself to become an emergency surgery. Take it from me and my path these last seven years: change is the only thing that is keeping you from living the life of your dreams.

My first post-surgery multi-pitch climb: my imaginings turn into reality (feat. new video)

In the weeks after making my decision to have a permanent ileostomy, my imaginings of what life was going to be like after surgery played in my head like little movies. There was the one that featured me happily leading hikes with my ostomy at work, and another in which I pictured myself successfully emptying my appliance on backpacking trips. However, the one that I liked to imagine the most involved being on a long multi-pitch climb.

There I was in my mind–hundreds of feet up a steep route and anchored into a small ledge with the climbing rope. I would picture myself removing a full pouch, snapping on a new one and then bagging up the old and tossing it in my pack like it was no big deal at all–as if I had been doing it that way my whole life. I would gaze up at the many pitches yet to go and get ready to climb, barely thinking about my ostomy at all.

As I prepared for and recovered from surgery, these visualizations became an important source of hope for me. I really had no idea if the reality would end up exactly that way I pictured it, but having these images in my head gave me a goal to strive for. I really saw no reason I couldn’t do all the things I was envisioning once I healed up.

One by one, in the year and a half since surgery, I turned those images in my mind into  actualities. I jumped right back into work and led hikes and nature programs. I worked my way into backpacking, even going on an eight-day trip 10 months post-op. Snowboarding, swimming, yoga, biking, short climbs–my return to all these sports has been just as amazing as I had pictured they would be. But there was one thing that was still just a series of images in my head:  the multi-pitch climb. Would dealing with my ostomy on a long, hot climb with small belay ledges be as doable as I had imagined? After all, one of the main reasons I chose to have a permanent ileostomy over j-pouch surgery is that I personally felt it would be easier for me to manage on all-day climbs. I was a little nervous about  putting that notion to the test. As I built up strength in the 20 months since surgery, and worked through some hip and shoulder injuries, I continued to wonder what climbing a long route was going to be like with my ostomy.

Last weekend I finally found out as I went with Doug and his brother and dad to climb Devils Tower in Wyoming. We had all climbed this famous rock formation in 1992 and were excited to give it another go. This reunion-style climb with my family was more than I could have ever asked for as my first post-surgery multi-pitch climb. Being back on the rock with all of them was a blessing.

Our gang on the summit of Devils Tower, WY, 20 years ago.
Our same team on the summit in 2012.
We are tired and thirsty, but safely back at the base.

The 15-minute video below highlights our adventure on the Tower. As I watch it myself, I am in awe at how similar the real images are to the little movie that played in my head in the hospital. For climbing and so many other aspects of my life, the things I imagined and hoped for with my ostomy did turn into reality–a truly amazing reality.

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

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

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 five in a series: I am thankful for Remicade

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.