Tag: ulcerative colitis

Onward I’d Run

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I was trying to catch my breath. I had run and sprinted, giving it all I got, putting all my strength and force into the end of this run. I was running along the creekside on the road just outside of the St. Mary KOA on the east side of Glacier National Park with the towering Rocky Mountains in the distance. Behind all this was not just the motive of wanting to take a morning run. It was a physical manifestation of my frustration, an outpouring of my emotion. I was so fed up with my body and this illness. Sometimes I’d feel fine. Then I’d be plagued with the most uncomfortable feelings in my gut, reminding me I was unwell, and this grave feeling of desperation would take over.  

So this early morning, I ran, faster, and faster, and gradually ran more and more onto the front of my feet. Soon I was sprinting. As I did so, my heart pounded forcefully in my chest, feeling as if it was about to burst out. My sides began to ache, naturally from the exertion and I wasn’t accustomed to running this fast. The exertion was painful as my lungs were desperate for more air than they could take in. Normally I’d slow down, or take a break, but I pushed onward, relentless to the pain. I was fueled by fierceness. I suppose maybe in some ways I felt, despite my will and desire, my body had control over me lately with this illness, and now through forcing it through such extreme exertion I was proving to myself I still had control over this vessel, or maybe I just wanted an outlet for all this build up burning frustration. 

The more I pushed myself, and the more I ached and desperately drew in breath, the more I realized it was pointless. I was sick. I could pour out all my efforts, all my strength, all my energy into this;  and my desire could be so strong, my efforts relentless, yet this wasn’t going away. I was still going to be sick. This wasn’t all on the forefront of my mind, but it was buried in there somewhere, and it explained how suddenly my legs and arms became limp, as I slowed down running. I hit a realization as tears of desperation and frustration ran down my face. I stopped running. The harsh reality fell upon me again. I could not not make this go away. Alone, I was helpless. I wanted to be in control. It was all out of my control. 

Just a few days before, I had my great moment of declaration upon the Highline Trail, in which I resolved I would not give into despair, and no matter my circumstance I’d bring glory to God through my illness. Often when we make ground spiritually and draw close to the heart of God, the devil has a counter attack. He did here I believe. Just moments after my heartfelt declaration of resolve, I experienced great cramping, desperation and urgency. Sparing you from unpleasant details, I was above the treeline, on tundra, exposed. There was nowhere to run away to, no privacy, and tourists were around me. With great anxiety I made do. But it happened over and over again, a persistent physical attack, leaving me exhausted. 

Exercising, especially running, I thought would be an outlet for this stress and inflammation in the body. After good exercise the body calms down and relaxes. I needed that. Ulcerative colitis also sometimes feels like there is a misplaced energy or fire within the body. The energy or fire was focused on attacking and burning my intestines. If I could, through physical exercise, displace the fire from the intestines and channel that energy into a more productive means, I’d be okay.  It’s an abstract feeling that I know is not exactly medically accurate, but it’s how it felt. There was also the feeling that I could force this all to go away, just as it came on so quickly, so too it could leave, like there was a switch in my body that needed to be flipped and it’d all be over. I felt I could flip this switch through exertion. I was trying so hard to displace this energy and flip the switch. After all, I felt there had to be something I could do to fix this problem. 

“Forgive me God, for putting my body before you…” I prayed “…for setting it up as an idol, for being so caught up in my health and physical strength and appearance that I failed to put my deepest value in you. I let myself become distracted from that which is most important” I knew this illness would be painful in any circumstance, but the fact I had idolized my body so much, made it all hit harder emotionally, now that I lost my health. I realized I needed this moment of repentance. “Help me focus on you and put you first.”

I continued onward calm and quiet in the presence of God on the Highline Trail among the majestic mountains and alpine meadows. For a while I escaped the turmoil of my condition. I had distractions.

“Look there are two bears,” another hiker called out. Sure enough, pretty far in the distance, but still visible with the naked eye, two big grizzlies grazed on the mountainside. This was my first grizzly bear sighting!  I was approaching the Granite Park Chalet. Here hikers lucky enough to score a spot can stay in the rock chalet overnight. I was only there briefly, observing the bears and heading descending four miles to The Loop. 

Just in time I caught the last bus back down to the Apgar Village. I was the only one there at the bus stop. I didn’t realize it was the last bus until the bus driver told me how lucky I was. I was exhausted. I had hiked around 15 miles in total, and my legs were very heavy. Although I had completed it, I went through such physical desperation and anxiety with my colitis, that I in many ways felt defeated by this hike. I enjoyed it in some short spurts, but mostly I was in survival mode. I didn’t conquer this trail. It got the best of me.  

The rest of the evening was relatively relaxing. There were other great distractions from my illness and my body was for the most part at peace. One such distraction was my visit to  the Lake McDonald Lodge built in 1913. It’s a National Historic Landmark and built in the beautiful Swiss chalet-style. Inside it is composed of rustic National Park Style architecture, in which design elements mirror the natural surroundings. It featured exposed rough wooden logs as beams, and railings and fixtures carved of rough planks and tree branches. It had a coarse stone floor and taxidermied animals of all kinds all over, including elk, moose, and goat to name a few. Great big murals of mountain landscapes and native americans adorned the walls, and an enormous chandelier of Native American lanterns, painted on in a petroglyph manner, glowed warm in the otherwise dimly lit space.  

The focal point of the lodge was an enormous stone fireplace and chimney, so big there are benches within the mantle, like a foyer to the fire. The precise term I learned is called an “inglenook.” I’m a big fan.  There is nothing that says northwest North America greater than this lodge. I poked around its three different levels and balconies, observing the art and taking in the extraordinary ambiance. Around some chairs and leather couches, animal furs hung and coffee tables stood on Native American rugs.  Theodore Roosevelt would have absolutely loved this place. It was just his style, and although gentle and calm, it seemed to boastly proclaim such words as “hunter.” “taxidermist,” ”naturalist,” “America,” and “the great outdoors.” I thought about how I’d love to sit here and work on my writing. It would be the perfect cozy and inspiring place to write.   

After snooping around the lodge a bit, I returned to the East Glacier Village and had my first elk burger at Frieda’s. I decided to go full-on tourist and pay a pretty penny for the burger. Its lean and gamey meat was delicious.  It was also relaxing to be waited on and enjoy a full meal after such a rigorous day. Having multiple cups of water brimming with cold refreshing ice was also just what I needed. This evening I felt normal and at peace. The next few days I’d have other moments like this, in that for a while I escaped the reality of my illness, but then at times- something would shift within my body and the feelings of being unwell would kick in with the anxiety and desperation that accompanied it. Over and over again I’d shift from feeling well and carefree then slapped with reality that inside I wasn’t well. I had to come to terms with this reality not just once, but over and over again. In more ways than one, it was exhausting and frustrating, leading me to my fierce early morning run ending in a tearful mess and the feelings of defeat…but I’m not defeated, I’d remind myself. It’s only an emotion. I must live and lead a life above these emotions. Onward!

If you enjoyed reading this, check out my book “Still, Calm, and Quiet“

Check out my previous entry here: “God’s Glory in my Suffering (victorious no matter what happens!)”

Visit www.joshhodge.com

My Personal Devastation: The horrific reality for me at Mount Saint Helens

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I’m not gonna make it, I thought. The moment was intense. I was running down the little path back to the visitor center at Mount Saint Helens National Volcanic Monument. The situation was urgent. I had the strength. I could do this. I made it in the nick of time. It was there, in the visitor center, where I had my own volcanic explosion…in the bathroom. It may seem like I’m trying to be funny, or just acting immature, but there is a sincerity and solemnity here. This moment was pivotal and not anything to take lightly. As lava spews from a volcano, blood was spewing from me. I was horrified. I can’t even say it was a nightmare, because it was unimaginable. I didn’t fear this moment, because I never thought I’d have this moment again. I had been through this before, and I thought it was all behind me. The suffering through ulcerative colitis was done, a thing of the past. I outgrew it, I thought, but it was back. In that moment emotionally I felt I had taken a stab to the gut and the wind knocked out of me. I was devastated. This in no way had been on my mind. It was unimaginable, but the blood was dark, and it was real.

Two years ago I was at the gastroenterologist. I had been in remission for six years from ulcerative colitis, but the infusion therapy which had saved me and gave me back my health eventually caused drug-induced lupus. I had to stop it. The gastroenterologist wanted to quickly put me on another new infusion therapy. I didn’t want to. When ulcerative colitis made its grand debut in my life, I didn’t know how to handle stress. I internalized all of it. I didn’t get enough sleep. I struggled with depression. I didn’t get regular exercise, and I didn’t know enough to eat healthy. I was still growing and developing physically as well. Through losing my health I learned a lot about taking care of myself. I had come to cherish moments of calm, moments to relax. I learned to let many things go. I had conquered depression. I was eating very healthy, and exercising regularly every day. I was strict on my sleeping habits, and physically my body had grown and matured. So I told the doctor I didn’t want to go on any new medication. I wanted to come off all medication, because I believed my body would hold up, and that I’d be just fine. At first I was hesitant when considering this decision, but over the course of a few weeks of prayer,  I came to a great peace about it. The doctor didn’t like my decision. “You don’t want to lose your colon, do you?” He tried to scare me, intimidate me into taking this new drug. He was obstinate in his opinion and I was just as much so in mine. I was giving up drug therapy whether he liked it or not. He closed out our appointment with “I’ll give you two months and you’ll be back in my office.” The truth is I never went back to that doctor. I fired him, but actually it was two years in which my body retained remission naturally before I was back in a doctor’s office. I proved him wrong. I thought my two years would turn into a lifetime, but now I was discovering that just wasn’t the case. 

I had become so healthy and almost obsessive about regular exercise, sleep ,and what I ate. I came to really love the body and valued my health greatly. So to learn that despite all my efforts everything was out of my control, was devastating. I had come to idolize my health so much, and now it was ripped away suddenly from me. Because I’d been through this illness before and knew how quickly it escalated, I knew my energy, my physique, my ability to eat and retain nutrients, to build muscle, to sustain myself, was all on the line. And in addition to that great sense of loss and the fear of what was to come, came memories of pain of the past. 

Ulcerative Colitis first beset me in college and the pain was persistent and at times very intense. It kept me up at night. I’d toss and turn in bed, unable to make myself comfortable, my stomach felt as if it was burning. One thing that seemed to help me a little bit was moving. To stay in bed, felt like I was letting the pain swelter and build up. I needed movement. I needed an outlet, if for anything, to distract me. I always had to distract myself from pain. So I’d card out of my dormitory at night, and I’d wander the streets for hours. When everyone else was asleep, I kept moving. Some nights, especially those leading up to being hospitalized, I was in too much pain to walk, instead I rolled around on the floor, back and form, like a crazy caged animal. The night before I was hospitalized, I was in so much pain, I wanted to pray, but my mind was so tortured by the physical pain  it couldn’t even formulate the words for prayer, so I literally just moaned and wept out to God.  In the hospital I was on a morphine pump, every two minutes morphine was pumped into my blood. So much so that I couldn’t even raise my eyelids. Even after my time in the hospital, nothing was truly resolved for a long while. The disease festered. At my 6ft 3in stature I weighed only 130 lbs. It took great effort to walk up the three flights of stairs to my dorm room, and one morning, losing a large amount of blood, I passed out in the shower. 

I could not go back to this. I just couldn’t. It had taken everything out of me, and to go through it again seemed unbearable. 

Then along with the horror came blame. I never expressed this blame to anyone at the time, but inside I was blaming the family vacation the month prior in New York. At the time the family dynamic was just a bit stressful, and I wasn’t able to follow my strict eating, exercise, and sleeping schedule. I believed it was the stress and irregularity of those events which put a toll on my body and flipped this switch from remission to active disease. Then there was Zach and myself to blame. It had been a strange dynamic between us. I was stressed about trying to make this adventure just as amazing for him as my previou adventures were for myself, but he wasn’t having that experience. He was complaining a lot and that really bothered me to the core. Also the fast few days, I felt like I was rushing around too much. I wasn’t taking the time to really relax and let nature’s restorative properties work on me. I needed to prioritize relaxing. I was convinced this return of ulcerative colitis was due to stress and not being on my regular schedule, but naturally I thought this at the time, because I had idolized my health. Looking back, maybe there are bits and pieces of these situations that are responsible, but I really don’t blame anyone or anything except the fallen state of humanity. I have learned since that yes, stress makes the active disease worse, but it will rear its ugly head provoked by stress or not. 

Earlier in the day, when I had stopped for gas, I remember getting out of the car. I felt light-headed for a moment, and something within me was not right. There was no way to explain it. I just knew intrinsically something was happening to me. I had no idea what, but looking back it was as if immediately, in that moment, my body flipped a switch and came out of remission. 

How was I going to tell Zach? I knew I had to. This was going to change the dynamic of this trip.  He had never even known this was something I dealt with in the past. We never talked about it, and it can be uncomfortable to talk about. A disease that affects the intestines and bowel with lots of blood, just isn’t pleasant. There was no casual way to bring it into conversation;  it was so deeply personal; and it wasn’t easy to bring up such deep pain. I’m going to have to modify my diet. I’m going to have to relax more. I’m going to have to try and not stress out about any details, and I am potentially going to be making much more frequent trips to the bathroom. I needed to tell him.

Leaving the visitor center, Zach bought a key chain which his dad requested as a souvenir. He remembered when the eruption of Mount Saint Helens occurred and had some connection or special fascination with it. Then we got in the car. We had a twenty mile car ride down the mountainous slopes and through the pine valleys. I was awkwardly quiet at first, and then I had to let the dam break. I told Zach what had happened, my loss of blood. I told him about my past pains and experience with dealing with the disease and all the horrible things it entailed. I knew, in my very gut, that this was not an isolated event, but the beginning of another long period of struggle, and so I wanted him to know why I felt so devastated.

I made a big mistake at this moment. I left God out. I knew Zach didn’t have a relationship with God, and so I thought I just shouldn’t bring Him up. I was shamefully weak in this regard. I had not developed the spiritual boldness which I now possess. I had some growing to do, and I was still clinging onto some sort of youthful notion that convinced me I needed to mold in with the audience at hand. 

God’s work in my life through my first episode of this illness in college was immense. It is my Crater Lake:  beautiful now, but painful at the time. God had taught me reliance on Him, dependence on His strength. He also taught me about faithfulness and gratefulness. He had me wrestle with questions of suffering, pain, and death. He also gave me healing and hope. To leave God out of my story of ulcerative colitis is basically lying by omission, and I was guilty of it. Zach, however, was a good listener, and sympathized with my pain, although I don’t think he understood how grave of a situation this was for me. I, though,  missed a great opportunity to give God glory and share of my relationship with Him. Now looking back, perhaps there was more than a lack of spiritual boldness. Maybe there was anger already boiling under the surface, a question arising in the subconscious that would come forth in a matter of weeks. I was mad, God, how can you let this happen to me again?

If you enjoyed reading this, check out my book “Still, Calm, and Quiet“

Check out my previous entry here: “What Kind of Mountain Are You?”

Visit www.joshhodge.com