Saturday, September 28, 2019

Four Years After My Crohn’s Diagnosis

I was diagnosed with a mild case of Crohn’s Disease back in 2015. I was 41. I’ve had digestive issues  since I was born as the doctor told my mother that I had an underdeveloped digestive system. I don’t really know what that means or what, if any, treatment there was back in the 70s, but I do remember having to avoid certain foods for awhile as a young child, like chocolate, milk, peanuts, wheat, etc. I continued to have digestive issues throughout my childhood and teenage years and was at the doctor’s office frequently. Looking back at a copy of my medical records from my family doctor when I was a teenager revealed that he suspected I had some sort of IBD but I was never sent for further tests with a GI doctor, probably because my symptoms were sporadic and not completely consistent and could very well be explained away by other stressors in my life.

In addition to gut distress, I also suffered from bouts of anemia, regular migraines and headaches and sinus infections several times a year. I recall a fairly miserable existence and an overall sense of malaise. Throughout my 20s and 30s, I would continue to go through periods of anemia and be put on iron supplements until my levels increased and then go about my life. I also continued to have regular episodes of stomach problems - stomach aches, bloating, gas, diarrhea, intense stomach pains and cramping. When 2015 rolled around, I had been dealing with my gut issues for a long time but I also had been suffering from a bout of anemia for about a year without relief, despite being put on iron supplements. I began to suspect that my iron depletion was connected to my relatively common diarrhea episodes and I relayed this information to my family doctor who sent me to a GI doctor.

I had a colonoscopy and that test where you swallow the pill camera that moves through your digestive system and takes pictures of your entire digestive tract.  My GI doctor said that the test results were consistent with a Crohn’s disease diagnosis concentrated in my terminal ileum, and so began the treatment options. I’m not sure if the treatment plan is the same no matter how severe the disease is, but I was put on Entocort (a steroid) and Pentasa, an anti-inflammatory. From my understanding, this is kind of the first line of defense to control the disease as the side effects are minimal compared to other drugs. The idea is to see how your body responds to the less intrusive drugs and hope that you don’t need to go beyond that.

I remember leaving the CVS after I picked up my first rounds of pills. Because the pharmacy didn’t have the 500mg dosage pills that were prescribed, I had to take twice as much in a 250mg version, so I was taking 19 pills per day and instead of my prescription coming in the regular white pharmacy bags, my order was in a brown lunch bag sized bag. I still remember walking down the aisle after picking up my prescription with tears welling up in my eyes. Was this my life now? Was I that person now who was going to have to take pills the rest of her life? I had been somewhat relieved after my diagnosis because I finally had an answer to the stomach issues that had plagued me my entire life but the reality of the situation didn’t hit until I carried that stupid brown bag out of the store.

Eventually, I accepted where I was with the hopes that the medication would do its thing and I continued to take it for the next year. I felt fairly good that year and only had a few episodes of diarrhea and discomfort. I had also started researching dietary changes that would improve my symptoms. The dietary component to Crohn’s disease seems to be highly debatable and very personalized which I’ll save for another post but the pills, along with these dietary changes had me feeling confident enough to return to my doctor to inquire as to whether I could reduce the amount of pills I was taking. He agreed to consider my request but only after I got another colonoscopy.

My second colonoscopy proved to be somewhat disappointing. Apparently, while the disease hadn’t worsened, it really hadn’t improved either and because of that, my doctor felt I should actually stop taking the Pentasa (the Entocort was only taken temporarily and for a short period of time so I was no longer taking it) and move to the more aggressive biologic drugs. My opinion (based on no medical knowledge, of course) was that while perhaps the Pentasa wasn’t necessarily making things better, it seemed to be keeping the disease from progressing and it was making me feel better in general, with no apparent side effects. I wanted to stay this course, but my doctor took what I consider an aggressive approach to treatment with the thought that you fight fire with fire to really keep the disease from progressing.

I had one other option before conceding to the biologic route and that was to try Imuran which is given to people who have had organ transplants and is used as an anti-rejection drug. I took that option because I was really resisting the biologic therapy. Unfortunately, shortly after starting on Imuran, I began to develop severe, stabbing, gnawing stomach pains to the point that I would have to take deep meditative breaths to try and sit fully upright or function.

With Pentasa and Imuran off the table, we moved onto Humira - scary black box warning label Humira which if you read Crohn's message boards/forums, you find out that the drug is a life saver or quite the opposite. I was terrified but I was more terrified of the consequences should the disease progress so I agreed to start the process. My Humira ambassador was an extremely kind and caring woman who walked me through the loading dose session (which I had run home during my lunch hour to do) and called me frequently throughout the first 6 months to check on my progress and note any issues I was having with the injections or the drug. I totally admit that Humira worked wonders in calming my system and I felt great EXCEPT about a month after starting treatment, I developed a massive UTI. I hadn't had a bladder infection in about a decade and it came on suddenly and quite painfully when I was camping no less. My husband and I were in the woods sleeping in our tent and I woke with the most painful, shooting pains in my nether region. Thankfully, we were just a few hours from home, but it was extremely uncomfortable and hurt tremendously. Fast forward through the year that I was on Humira, I continued to experience a painful UTI every other month or so and was at my regular doctor's office and Patient First offices on rotation. I had been doing some internet research on Humira and saw that bladder infections were a possible side effect and even one of the nurses at Patient First pulled up that information on her phone confirming that it was a side effect. My GI doctor, however, basically insisted that the Humira wasn't the cause because none of his patients ever complained of a UTI as a side effect. He suggested that I had something else going on and referred me to a urologist. The urologist ran several tests and everything came back fine.  After explaining that I was taking Humira, the urologist agreed that it could be causing the recurrent UTI's.

What to do? What to do? Humira was working to help alleviate my Crohn's symptoms but the UTI's were unbearable and put a much higher damper on my life than the Crohn's ever did.  I literally couldn't leave the house because of the pain and the urge to urinate every few minutes.  It was at this point that I decided that I would rather deal with the Crohn's symptoms, something I had dealt with all my life (without a diagnosis) than recurrent UTI's. So, I quit. I had one injection pen left before I had to reorder and I just quit. I didn't tell my doctor and I didn't ask his opinion. I told my Humira rep about the situation and then I eventually called my doctor's office and told his nurse that I wasn't going to be returning to their office.

My last Humira shot was on June 26, 2018. I haven't made any arrangements to find another GI doctor yet because I've been holding my own for the past 16 months. I've made major dietary changes which are a combination of cutting out most processed foods and concentrating on a whole food, initially plant based diet and also trying to eat more intuitively. I went vegetarian for a few months but now incorporate some animal proteins into my diet. I exercise regularly (and always have) by cycling, running and a yoga practice. I've made significant changes to reduce my stress levels and practice breathing and meditation.  Things aren't perfect but so far I'm holding relatively steady in the gut department.

I don't recommend or condone quitting your meds or your doctor like I did but it was clear to me that my doctor was confident that his course of treatment wasn't the cause of my larger issues at the time which were the UTI's. Additionally, he didn't believe that dietary changes had any effect (or had little effect) on the disease. Obviously he knows more about the disease than I ever will from a medical standpoint, but I felt like he was on autopilot with his knowledge and feedback and wasn't willing to entertain other protocols than what was taught in medical school, and perhaps he isn't permitted to, but I've read about other doctors who are more progressive and forward thinking about treatment options and when the time comes that I need to seek medication to control the disease again (hopefully this doesn't happen), I will seek out a doctor that is a better fit for me.

From what I can surmise, the medical community doesn't know a ton about Crohn's disease. From my 23 & Me raw data, I can tell you that I have several markers for Crohn's, which doesn't mean that I would have necessarily suffered from the disease but I have the propensity to. Genetics and environmental factors can all play a role in how the disease may manifest itself. I've read studies questioning whether Crohn's is a true autoimmune disease where the body attacks itself or whether it's the opposite where the body just doesn't have the stamina to maintain a conducive microbiome. My point is that you need to be your own advocate. Read articles, even if you don't understand all of the language, read studies, read what other people are doing to combat the disease and work with your doctor to come up with a treatment plan that you can live with.

What I find humorous about the Humira commercials is that they mention something about, "Are you just managing your Crohn's disease?" Of course you are and they can't do any better, because that's all you can do - manage it. There's no cure and there's no magic pill or shot or surgery that will eradicate it. Would I still be taking Humira if I didn't have the recurrent UTI's? Most likely, because it was most definitely helping my digestive issues. I also know that I've been super fortunate to be in a relatively healthy holding pattern since my last shot. I'm a bit terrified because I don't know what my options are for treatment should I need to return to the doctor but for the meantime, I try and maintain a positive attitude and listen to my body's cues on how I'm feeling and what foods are suiting me at that moment.

Stay healthy my friends.

Friday, September 6, 2019

Breaking My Television Addiction/Habit

It may sound silly, but one of my concerns about embarking on our van life adventure was that we wouldn’t have a television. I grew up on television and with television. It’s where I spent my Saturday mornings watching cartoons when I was little, where I ate dinner (with the exception of major holiday meals), where I went for comfort, and where I went for company. I would turn it on when I got home from school and later when I got home from work and always have it on in the background until I went to bed. Television soothed me and many times provided an escape from the unpleasant and harsh realities of my life and I leaned on it to take my mind off the daily grind. (Reading has also afforded me these luxuries over the years, but for a time, television was my main source of support.)

There’s nothing wrong with watching t.v. It can be very educational and interesting and I’ve learned many things from watching it over the years and honestly, addiction might be a strong word to use for my television consumption. I never cancelled or missed work or appointments or other plans because of it (except once) and I could easily turn it off and leave the house and not have separation anxiety, but I could also easily spend 4+ hours every night after work just watching t.v. and even more on the weekends.

Luckily, something happened last year before we decided to go forward with van life which helped me start the mental transition out of my television habit. We had two main cable carriers in our area, Comcast and Verizon. We used Comcast for years and, despite other’s complaints, had consistently good service with them. Their user interface, guide and menu display was easy to use and intuitive and their voice controlled remote control was awesome. We loved Comcast but after while couldn’t justify the prices. When our monthly triple play bill (t.v., internet and phone) was going to top $200, we made the decision to move on and switched to Verizon for their cheaper (yet temporary) introductory monthly fees of a much lower $130.  There are some real diehard Verizon Fios fans out there and to each their own, but from the moment we switched to Verizon, we looked at their remote control which looked like it hadn’t had a redesign since remote controls were invented and felt a little disappointed and deflated. After navigating their user guide and menu functions, we realized that we had just traded in our Porsche for a Yugo.

Because Verizon’s television interface (not sure if this is the correct word here) sucked so badly, I began to watch less t.v. Yes, a simple thing like a menu and guide display had an effect on my television usage which turned out to be a real blessing. Additionally, we were busy with getting our house ready to sell and in selling down our possessions so my free time was easily taken up with other activities.  I was more than happy to contact Verizon to cancel my service when we moved.

Since we started vanlife, television is probably one of the luxuries that I miss the least.  One of the experiences I love most about our current situation is that we no longer eat meals in front of the t.v. We eat meals in city parks, in valleys full of wildflowers, on forest service roads, on park benches or even sitting in our van in a Cabela’s parking lot. Instead of staring mindlessly at the news or some HGTV show or Hallmark movie (which I will still always love), I watch birds or the wind blowing tall grasses in a field or at families enjoying picnics or playing in the park. Time that I would have spent in the evening watching television is spent reading a book or magazine, talking, listening to music, relaxing in a folding chair at a campsite or pondering what I want to do with my life when vanlife is over.

It’s been a freeing experience and something I never thought I would appreciate saying goodbye to. Will I resume my habit when we’ve settled down again? I know I will to some degree, but I hope not to the extent as before. It’s surprising though what space opens up in your mind and soul when you make a little room for new opportunities. If you have a habit that you know isn’t serving your best interest, consider taking a break from it for awhile and see if you can fill that void with something more positive.

Wednesday, September 4, 2019

Ride Report: Slickrock Trail, Moab, UT

Where do I start with this one? I hesitated even writing a ride report because I didn’t necessarily have anything positive to actually report, but now that it’s been a few weeks and the black memories have faded slightly to a darker grey, I feel like I may to able to conjure up some kind words.


The day after we rode The Whole Enchilada, we were planning on heading out of Moab so we could sink our tires into the Colorado trails people have gushed to us about for years. Although I had mentioned to Jay before we even got to Moab that I wouldn’t be upset if we skipped Slickrock, I knew on some level that we weren’t going to make it out of the area without riding it.  I had no reason for my aversion to the trail, however.  I think I just thought it was going to be really difficult but also kind of boring.

For a short amount of time, I thought I had escaped the ride, but then Jay casually mentioned that since we were there, we really should ride Slickrock the next morning before leaving town. Okay, fine. I knew this was going to happen in my heart of hearts so I accepted it and really tried to put on a positive attitude. We had stayed in a Super 8 motel the two days we were in Moab so the morning of the ride, we checked out of the hotel and made our way to the trailhead.  There’s a $5 entry fee per person to park in the Slickrock parking lot so even though it was only $10, the fact that we paid for the entry meant we were going to actually go through with this.

I had heard stories of how crowded this trail could become and that people had to actually stand in line at times to ride the rocks, but to my surprise, there were only two other cars in the parking lot when we pulled in around 10 a.m. Maybe that should have been a sign.  The entire trail is about 11.5 miles with a 2.5 mile practice loop built into that total. Because it was already hot when we started and we were still planning on driving to Durango that afternoon, we skipped the practice off shoot and headed for the main loop.

You probably know that Slickrock isn’t slick or slippery at all, at least not when riding on mountain bike tires; it’s actually very tacky so there was never really any fear of sliding down the rocks from slippery tread. (I'm not sure what happens when it rains and whether that component is compromised. I'm assuming it would be?) The fear crept in in two other ways. Did I mention it was hot? The inferno we were riding into that day was made worse by the fact that being in the high desert, there was little coverage from the sun and the sad little scrub brush that did manage to sustain life amongst the rocks only provided shade for my feet at best. Total exposure to the elements. It’s no surprise that my less than stellar attitude going into the ride amplified my perception of how hot it was and additionally I was still a bit drained and dehydrated from the 25 mile Whole Enchilada ride the day prior.  I kept reminding myself though that the trail would only be about 9.5 miles since we ended up skipping the practice loop. How bad could it be?


Fear factor part two entered when I realized that this trail wasn’t just about the experience of riding on slickrock in the desert; it was about who could ride the steepest rock faces on the planet. This was a climbing trail of epic proportions. The climbs were relentless, steep, punchy and exhausting and for me, impossible. Jay is a great climber, especially when something is really tough. Instead of getting pissed off and saying “screw this” like I do, these challenges encourage him to conquer them and he conquered many of the climbs that day. I, on the other hand, hiked many of the climbs that day.


Per the usual, the pictures really don't do the elevation changes justice. Some (many) of the rock climbs had to be at least 20% grades in terms of how steep they were and they were one right after the other. There is a point probably half way through that we were riding a ridge line of sorts which was manageable but that only lasted a short distance. By the end of the loop though, even Jay was ready to get the hell out of there. Seeing the signs indicating the trailhead was somewhat near was the highlight of the ride. I may have cried a little bit.


We made it back to the parking lot and I sat under one of the picnic shelters staring listlessly at the ground for quite some time. I was miserable but also knew that I had the opportunity to ride something that most mountain bikers have heard of and may never experience. I felt badly for robbing someone of that opportunity with my shitty attitude and felt that I should have been more appreciative than I was. You can’t help where your head is sometimes and mine wasn’t in the game. I know people that love this trail and would probably ride it every week if they lived there. It just wasn't for me. Did I have a bad attitude going in? Absolutely. Did that have an impact on how the day played out? Absolutely.

I think I mentioned in the beginning that I may have some kind words about this experience. The trail system as a whole is really well marked in terms of where you're supposed to ride and someone spent a long time laying out the painted lines that serve as your guide. The views are gorgeous and the slickrock is a marvel in and of itself. It's a marvel I would rather just kind of stare at instead of ride but it's a marvel nonetheless. If you're looking for a climbing challenge and a good cardio burn, this is your trail. If you can conquer even half of these rocks, you should feel really good about your abilities. It's also a great place to train for climbing in general. It's really great to see how different localities take advantage of their terrain and make the best with what they're working with and Slickrock is no different. The terrain is really unique and probably not found in many places anywhere.

I was super fortunate to have the opportunity to ride not only this trail but in this part of the U.S. at all and for that, I can't complain.

Monday, September 2, 2019

Finding the Space.

As I mentioned in the last post, maintaining a regular yoga practice on the road has been tough. When we’re in a place that has WiFi, it’s usually not conducive to rolling out the yoga mat and YouTubing a routine in the middle of a Starbucks for example.   However, Jay managed to download a couple of morning Yoga with Adriene practices so I have a few queued up on the laptop when it’s convenient.
My first yoga practice on the road was in a parking lot on the banks of the Mississippi River in LeClaire, Iowa. We had a rough night and when morning arrived and the sun greeted us through our van windows after a night of pouring rain, I felt my mat calling me from the back of the van. It was just what I needed - a little quiet, inner work on the ol’ soul so I rolled out the mat and put together my own little routine.

I managed to find a free yoga class at a library in Bozeman, Montana and was excited to be able to participate.  It was a great class with the exception of a few toddlers running around the room banging on the windows and standing on people’s mats.  I kept reminding myself that yoga isn’t really about the physical practice at all and more about maintaining some sort of a mindset where you’re not supposed to be pissed off that little kids are ruining your opportunity for some real class time but I’m just not there yet and I was in fact pissed off the whole time. At the end of the hour, the instructor mentioned that we should let go of any expectations we had for ourselves or the class and basically just be present with where we are in our lives at that moment. I thought it was a super creative way of telling those moms that their kids fucked up the class experience for the rest of us. At least that’s how I interpreted it to make myself feel better.

I tried to roll out my mat in a beautiful camp spot in Bighorn National Forest but the mosquitoes were large and persistent so that lasted all of 30 seconds.
When we were in Squamish, BC, we parked every night across the street from the town’s public library which was also next to their community garden and a lovely park. I tried to wake up early enough to get in a 20 minute practice before parents brought their kids to the playground in the park where it would have been potentially weird for me to be hanging around on my mat amidst the jungle gym.

Perhaps one of the most inspired places I've practiced was in Castle Gardens, Wyoming - a camp spot we found on BLM land which was just gorgeous. We had the little canyon all to ourselves for two days and it was kind of magical.

Castle Gardens, WY
Otherwise, I take advantage of when we're staying at friends or family's houses and get in a few practices here and there.  It would be really easy to just say screw it and not try and find the time or the space to get on the mat, but I realize how important yoga is to my wellbeing, maintaining a positive headspace and staying flexible in mind and body. I've practiced yoga on and off for years but it's only been the last few years that I accepted the fact that it's something I need on a regular basis. I don't need a fast flow class or anything super intensive but I need the time to get back into a good mental headspace and stretch my muscles. Find the space. Find the time. Find what makes you feel like a better human being - even if for only an hour.