Memories of harder times

Last year at this time, I was just beginning my downward spiral into my final severe Ulcerative Colitis flare. Each day of the next few months will be an anniversary of something UC-related, and the flashbacks to those harder times will be abundant: there are the dates of my multiple ER visits, the admission for my 16-day hospital stay, my first Remicade infusion, the day I came to realize that surgery was my best option. It seems like reminders of my past illness are lurking around every corner. But then so are reminders of my amazing recovery.

Healing physically and regaining strength follows a fairly logical and direct path; recovering emotionally is a bit more circuitous. Sometimes it is hard for my brain to grasp all that has happened in the past 12 months. How in the world did I make it through the tough events of the year to get where I am now? It all seems to have gone by so fast, and I don’t believe my mind has fully processed everything yet.

Waking up from surgery on November 8th, 2010

Even a simple doctor visit brings memories to the surface. Today I went to my primary care physician for a routine physical. It was strange in a way to be feeling so healthy again. My doctor and I hardly had anything to discuss. I had some lab work done to check B12 levels and other things to make sure I am absorbing nutrients correctly since surgery. Watching the needle go into my arm in the lab took me back to my days in the hospital. There, blood work and IVs made dealing with needles a daily occurrence and my arms were a mess of prick marks and bruises. Now it had been months since I had last seen a needle and the skin on my arm was beautiful and flawless.

And who would have thought seeing the final Harry Potter movie would set off a wave of emotions? Last December, four weeks after surgery, Doug and I went to see the second-to-last film in the series. Other than a few shopping trips, it was one of my first excursions out of the house. After the movie, we stopped at the grocery store and Doug ran in to get something. When he came out, he found me sobbing in the car. I am embarrassed to admit to having such a ridiculous pity party now, but what had set me off was Hermione’s fashions in the movie. I  liked to dress in a similar style, and I thought I would never be able to wear my favorite clothes again. Not to mention that  Harry, Hermione and Ron did a lot of camping in that movie. It made me worry that I might never do that again either . So, when I (wearing my favorite jeans once again) went to see the final film with Doug last month, that memory came flooding back, and I realized how much I had improved since seeing the last film.

Even outdoor activities often take me back. I just returned from an amazing eight-day backpacking trip deep in the San Juan Mountains of Colorado. (I hope to get a video out on this in the next few weeks after sorting through the footage.)  It was on a backpacking trip during the same dates last summer that my final UC flare took on a severity that I had not experienced before. As I hiked through the mountains last week, I often reflected on the extreme bleeding, fatigue, nausea and abdominal pain I felt on that trip and how immensely better things are now.

One of my many mad dashes to go the bathroom when my UC worsened during a backpacking trip on September 12, 2010 in the Mt. Zirkel Wilderness, CO.
Jokingly hoping the power of a huge quartz-crystal dike in the Mt. Zirkel Wilderness might help heal my worsening belly ache and nausea. It didn't work. Three days later I made a trip to the ER and a week after that I was admitted to the hospital for 16 days with the flare that led to my surgery.

Then there are the places that act as reminders. Our recent backpacking trip departed from Durango, CO. At around seven weeks post-op, my husband and I took a week-long trip to this town. The excursion was liberating. It was a seven-hour drive there, and it was my first time emptying my appliance at rest stops and gas stations along the way. It was also the first time I changed my appliance away from home. However, I was still in a lot of pain due to my body being stubborn in healing my abdominal incision. It was a struggle to walk a few blocks, and I spent a good share of that trip curled up on the couch at the condo in tears, wondering if I would ever get back to normal. Now, eight-and-a-half months later I was confidently walking down the streets of Durango, pain-free and an expert at managing my ostomy. As I strolled along, my mind kept flashing back to scenes of that hurting and scared woman. I could hardly recognize her. Was that really me such a short time ago?

Journaling out my anxieties at the condo near Durango on December 27, 2010.
Journal entry from December 27th, 2010.
Forcing myself to go for a 2-block walk despite incision pain at the condo near Durango on December 27, 2010.
Feeling much more silly and strong in Durango before heading out on our backpacking trip on September 3rd, 2011.

Perhaps someday the memories of my illness will begin to fade. However, maybe I shouldn’t be so eager to purge these recollections from my head. They are an important reminder of all that I have gone through and all that I have overcome.

Feeling jubilant on North Eolus (Elevation 14,039') in the San Juan Mountains on September 8, 2011.
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8 thoughts on “Memories of harder times

  1. Heidi – your memories of being sick are important. You need them as comparisons to who you’ve become. Every experience is a part of you forever. I’m thankful that you are comfortable sharing them.

  2. Thanks Charis. You are incredibly inspirational yourself! Speaking of memories… I realize it is has also been about a year since I first contacted you when I was so sick. I will be forever grateful for the encouragement you gave me last fall.

  3. Heidi – I found your blog page by searching for Ulcerative Colitis and Backpacking. I’ve been recently diagnosed back in April, and although I am feeling much better, I know I have many more years ahead of me that can and probably will be challenging. I just wanted to tell you that I’m inspired by your journey. I will be embarking on my first backpacking trip (November) since being diagnosed. I’ve really been most concerned about fatigue and fuel (food sources) that does not upset my system.

    I will tell you, I’m an avid cyclist and have spent the year racing mountain bikes but it takes me several days to recover. I sure hope I can go day after day after day of hiking in Arkansas. Here’ praying I can make it through it. I sure don’t want to have to give up backpacking.

    Thanks for your words and pictures in your blog. Its an inpiration for sure.

  4. Hi Alan,

    I am glad you find the site helpful. I had several people reach out to share their IBD stories with me when I was sick, and I know how important it is.

    That is good news that you are showing improvement since April. Ulcerative Colitis is very unpredictable, so stay positive and strong. You may be lucky and not have your disease progress. For many, many people, their UC does stay mild and well-controlled with medications.

    My UC was mild for about six years before it started to get more moderate to severe in the following four years. During those combined ten years, I still had countless amazing backpacking, climbing, skiing, snowboarding, canoeing etc. adventures. Try not to let your UC stop you from pursuing what you love. I frequently backpacked and climbed with pain, bleeding and fatigue. I had to take it easy and go slower, and sometimes I had to dig more catholes than the average person, but the joy of being in the wilderness was worth dealing with those things to me. I only cancelled a few trips because I was just too sick or was afraid to be far away from medical care. As far as foods, sticking to low-residue things like rice, pasta and crackers worked for me. Nuts were hard for me during flares. I seemed to do okay with protein bars too (the smooth, non-nutty ones like Think Thin bars). I did not seem to have a problem with lactose, so cheese didn’t bother me. It causes issues for some people though. Just experiment with foods in the next month or so before you take them on your trip to see what gives you the least amount of problems.

    My love of outdoor adventure actually helped me make the difficult decision for surgery. I knew as soon as UC, and the side effects of some of the drugs I tried, made it impossible to hike, climb, snowboard, etc…. it was time for my colon to go. If your UC does end up getting worse down the line and stops you from doing what you love, know that surgery is a great option to get your quality of life, and all the things you are passionate about, back. So far, my ostomy has not stopped me from doing anything,

    Best wishes on your November trip. Please let me know how it goes!

    Cheers,
    Heidi

  5. Heidi,

    Thanks so much for sharing EVERYTHING!! It’s so nice to come across people who have had journeys similar and can truly understand what someone with UC or Crohns really goes thru. I have Crohns and have a permanent illeostomy as well. I have had many surgeries along the way but have realized I would not change a thing if I could do it all over since all of this has made me who I am today, a person I really like! I am 46 yrs. old and had my first colostomy surgery when I was 25. I have never changed who I am and my ostomy will never define me. I feel as though I do so much more now than I ever did when I was really sick. I know the surgeries have given me my life and health! I have 2 beautiful daughters (yes, I got pregnant twice with a colostomy) and both are in Girl Scouts. It’s funny because I help out in so many ways but I don’t go with them on the overnights. Most don’t know I even have an ostomy but I also have always felt that I would need running water and a bathroom that flushes to make those overnights bearable so I have always opted out. You’ve given me some thought and another way to possibly challenge myself. I might just go on the next one!
    You’re a true inspiration to many and thanks again for sharing so much.
    Kim

    1. HI Kim,

      Thanks for the great comment. I completely agree with what you say about not changing a thing. I have learned so much through this experience. I have an even bigger sense of gratitude now for all my friends and family who have supported me and for the amazing medical professionals that have helped me out. I appreciate the small things in life so much more now too. I can be doing something simple, like sitting out in the sun and feeling the wind on my face, and I just feel this immense awe and sense of wonder at how amazing it feels to be healthy again. I have also learned much about myself through the experience. I have found out how strong I really am and have discovered more about my abilities to overcome obstacles.

      I am glad you are inspired to go on a scouting overnight with your daughters. You absolutely should! Most developed campgrounds at least have a water faucet. There are great water jugs with spigots that you can sit on a picnic table… instant running water:) And emptying in outhouses is a breeze. If they are dirty and you don’t want to sit on the seat, you can actually empty standing up. With the extra deep hole, you don’t have to deal with the dreaded splash-back that happens when emptying this way in flush toilets.

      Thanks again for sharing your story!

      Cheers,
      Heidi

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