Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, July 26, 2013

Grabbing Life

(Over Seven Months Out From Takedown)

  BM = bowel movement       G.I. = gastrointerologist       J = what I call my j-pouch  
  pouchitis = inflammation of the j-pouch, usually caused by a bacterial imbalance  
  takedown = reversal of the temporary ileostomy in order to hook up the j-pouch for use after healing  

"With a hint of good judgment, to fear nothing, not failure or suffering or even death, indicates that you value life the most. You live to the extreme; you push limits; you spend your time building legacies. Those do not die."  -Criss Jami, Venus in Arms (2012)

Apologies ahead of time for the long post, but I have a lot to talk about today!

First off, if you've been following my blog for a while, I'm happy to share that after a recent conversation with my lawyer, anonymity is no longer required.  Although I still write under a pen name in order to maintain a little privacy from my students, I've gone back over every post and removed all the yellow circles that used to be covering my face in the photographs.  While I was at it, I also added a couple new photos here and there, so feel free to go back and browse if you'd like.

Secondly, I will tell you a bit about some minor health events that have occurred in the last few months before I get to the fun stuff.  A couple months ago, right before school let out for the summer, I got a little overly confident with J's progress, and I started working out more, changed my diet a bit, and added some powerful antioxidant supplements.  Suddenly my frequency, urgency, and anal pressure was way up, meaning I felt like I pretty much had to go all the time (even right after a BM), but I would only pass a tiny bit at a time.  My first conclusion: pouchitis triggered by a supplement that I had previously suspected used to aggravate my ulcerative colitis (mistakenly thought it would be safe since I no longer have a colon).  When I figured this out, I immediately tossed the supplement in the trash and called my doctor, who started me on a round of Cipro (antibiotic commonly prescribed for pouchitis).  This did the trick to reduce the urgency and frequency within 24-hours, but ever since then, my ability to sleep through the night has been shot.  I've been hoping that I would slowly return to that point, and now after a couple of months, I think I am getting pretty close.  Will be super excited if and when this happens.... hope it's before school starts in a couple weeks.

In addition to dealing with the pouchitis, I had been noticing a build-up of air in my stomach and intestines during the late spring and early summer.  I'm not talking about your typical gassy j-pouch, but rather a painfully bloated belly, and no matter how much gas I passed (up or down), it just kept continuously filling back up.  I lost my appetite because of it, and when I did eat, I couldn't fit much in my tummy since it was already full of air.  It seemed to be the worst in the mornings.  I figured that this was due to an imbalance of bacteria that was still sorting itself out from the two months of solid antibiotics that I was on following my takedown, and the recent week of Cipro hadn't helped.  I'd been waiting for the issue to resolve itself while trying some generic probiotics as well as eating yogurt every day, but this didn't seem to do any good, and since the problem was sticking around for longer than I thought it should, I decided to call my G.I.  I'm thankful I did.  As we chatted over the phone, she said there were tests she could run, but first she had me try three modifications before I bothered with making an appointment for testing:
  1. Increase my omeprazole (for acid reflux) from once a day to twice a day.  
  2. Switch my probiotic to the name brand Align, since it has a specific strain of bacteria that she wanted to make sure I was getting (bifidobacterium infantis).
  3. Cut way back on simple carbs, since that is what the bad bacteria feeds on.  
I did all three, and the air was miraculously gone by morning.  (Have I mentioned how much I love my G.I.?)  I have since added carbs back in with no negative effects, and more recently - upon doctor's approval - dropped the omeprazole back down to one a day.  I'm still taking the Align until the pack runs out (six week supply), and hopefully things will have stabilized by then.  Problem solved.

Thirdly, I'd like to include an update on how my diet has changed since my last post.  I am feeling much more positive since then because of what I have discovered as I've been experimenting with food.  I've actually found out that I have very tight control over the density/consistency of my BM's strictly based on how many vegetables I include in my diet.  In my last post, I was frustrated with the anal pressure and difficulty evacuating that stemmed from eating a high-fiber diet, so I had cut out all veggies.  My BM's quickly switched over to a very watery consistency, which ended up being TOO loose, to the point where I was having increased frequency yet again and even some trouble keeping them in!  Since then I have found a happy medium.  The perfect balance seems to be one normal-sized serving of veggies per meal (who woulda thought?), which would be a good handful or two of cooked veggies or a small side-salad.  If I keep it at this level, my stools remain loose enough to evacuate easily but thick enough to retain easily.  The perfect consistency is about that of apple sauce or a milkshake.  I'm glad that I can still get nutrients from vegetables and don't have to cut them out entirely, and I'm even more happy that I actually have reliable control over my BM's.

The other dietary miracle I have discovered is that when my G.I. told me to cut out carbs (which was around the same time I was cutting out veggies - right after my last post), it had no negative effect on my j-pouch.  At the time, my diet looked a lot like Atkins, but when I added a serving of vegetables to the mix to thicken things back up a bit, my j-pouch was a happy camper even without the carbs.  Coincidentally, this high protein, low-carb diet caused me to drop weight like mad.  So I have also discovered that I have pretty tight control over how quickly I lose weight by how many carbs I consume.  If I want to trim down slowly, I can limit my carbs to small amounts.  If I want to trim down quickly, I can cut out pretty much ALL carbs (especially simple carbs) and just increase my lean protein and healthy fat intake while my j-pouch remains unaffected.  So a typical meal on this plan would look like any of the following:
  • turkey steak, a side salad, and half a sweet potato with a little butter
  • chicken tenderloin with steamed veggies and a side of refried beans
  • spinach scramble topped with a sprinkle of cheese and avocado along with a greek yogurt
  • taco salad minus the chips: lots of diced chicken, shredded lettuce (not too much), shredded cheese, black beans, diced onion, diced tomato, avocado, a spoonful of salsa and plain greek yogurt (excellent sour cream replacement)
I should add that in recent years I have also learned to stop eating when I'm full.  (I used to be a chronic over-eater.  Like, I would eat till I felt sick at every meal.)  Since I have always also been a very slow eater (I chew my food thoroughly), this gives my body time to realize it's satiated well before I've eaten the same amount as someone who eats more quickly.  Does that make sense?  So someone next to me could be eating one full serving of food in the same amount of time it takes me to eat half a serving or less, but we both get full around the same time.  You can guess how this affects my health: I end up eating very small portions, which helps contribute to my trimming-down.  Now, don't get me wrong... It still takes huge amounts of will-power to resist cookies, donuts, french fries, milkshakes, chips, crackers, etc, but I can do it if I want it bad enough.  And as long as I give myself pretty small amounts of these things here or there (meaning OCCASIONALLY, on special occasions, not every day), I don't feel so deprived that I break and binge (a debaucle at which I also have great practice and skill).  (Can you tell I have a bit of a parentheses fetish?)

Since I am a person who likes being in control, I am very excited to know that I am back in control of both my stool consistency and my weight, and I am really stoked to be able to work towards my fitness goals just as easily as before.  In fact, this may be the time in my life when it is the EASIEST to work towards my fitness goals since I am no longer sick and am all healed up and past all complications from surgeries.

For the first few weeks of summer break, I was making it to the gym almost every day.  I had to take a break due to a few things that popped up (travelling, house renovations, health issues), but between those weeks in the gym and the house renovations I've been doing (using power tools and lifting 60-lb bags of concrete, bags of sand, hundreds of 15-lb patio pavers, kitchen cabinetry, etc.), I've actually been gaining a good amount of strength, muscle and endurance through the summer.  In order to keep the momentum going, I'm going to jump back into that daily gym routine starting tomorrow.

These recent dietary and athletic developments have gotten me back down to fighting shape.  Right now I am right around 135 (at 5'7"), which has been my goal weight for a long time.  I still have a few trouble spots I'd like to see trim down a bit more (tummy, inner thigh, love handle area), so although I'm pretty happy with where I'm at, I still have goals.  I'd like to lose another ten or so pounds of fat and gain a bit more muscle, and I'd still like to work on running and building my lower leg strength so I can endure a half-marathon without getting mega shin-splints.

Since I have been feeling so incredibly healthy the last couple weeks because of everything I have discussed above, I have decided to finally get back into roller derby.  I used to play for a league over three years ago, but had to quit due to both an injury and a move, and then when I normally would have picked it back up, timing was always terrible: I was starting a new job, or too sick to play, or going through surgeries, etc.  However, I think I'm finally in a place where I can get back into it.  In addition to being a whole lot of fun, the twice-a-week, two-hour-long practices are a KILLER workout, with frequent games to boot.  I have found a league I want to join, and will be starting practice next week, which I am super stoked about, so you can expect pics of me on wheels in the near future.  I can't wait to get back on my skates!

You can't even see my scars!
And finally, I should mention my recent travel adventures.  In the beginning of the summer I took a trip down to southern California to visit some friends, which was a lot of fun.  But even more exciting was a couple weeks ago when my manfriend and I flew down to Mexico and stayed at a five-star, all-inclusive resort on a beach in Cabo for a week.  It was fantastic.
We spent a lot of time lounging by the pool and sipping mai-tais, pina-coladas, and daiquiris.  We went for a romantic night-time walk down the beach, went on a snorkeling boat tour, took a taxi downtown to cruise the local shops and practice our bargaining skills at the flea market, splashed in the waves, chilled out (or rather heated up) in the hot tub at night, feasted on buffets, watched the nightly shows, and I even got a free SCUBA lesson in the pool.  PLUS, I came back with a killer tan.  We both had a blast and decided we are going to do a LOT more travelling in the future.

My motorcycle has been sitting in the garage for most of the summer because of hectic schedules, travelling, health issues, and needed repairs, but today I just got new tires on it and took it for my first out-of-town ride, which was amazing.  I will be riding it a lot more now that I have all the repairs done and got my riding boots fixed, and I'm pretty excited about that as well.  For an adrenaline junkie like me, it doesn't get much better than riding motorcycles and playing roller derby.

So between my developing relationship with the man of my dreams, my new-found control over my body, my fulfilling workouts, my travel adventures, my motorcycle riding, and my roller derby plans, I really feel like I am living life to the fullest.  The point I want to get across today is how enriching of a life you can lead with a j-pouch.  Of course J isn't perfect - I still go to the bathroom more often than I'd like, and I still have to avoid chili powder or I get butt burn from hell - but as you can see, it's not holding me back from enjoying life one bit, and I'm back to grabbing life by the horns.

Feel free to leave reactions and comments below...
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Monday, July 1, 2013


  Stricture - a narrowing of a canal in the body.   
  Anastamosis - Surgically attaching two parts together through either hand-sewn or stapling techniques.  

"Some days I question my decision- then I remember that I'd probably be underground had I not made this one..."   -Allison Siddle   (No Colon and Still Rollin' Facebook Group)

I was originally going to write this week about pouchitis, j-pouch tips, and working out with a j-pouch, but yesterday another topic jumped out and waylaid me seemingly out of the blue.  So here it goes...

I've tried really hard to maintain a positive, optimistic outlook throughout everything I have been through, and it has helped me to really take all the obstacles I've had to face in stride.  Plus, it's been like some big journey, the destination of which, or the "prize" at the end, is supposedly a well-functioning digestive system, which is the dream that we are all aspiring to.  So here I am, seven months out from takedown, and shit's starting to get real.  The "honeymoon" phase has worn off, and I'm learning what my new baseline looks like.  What life with a j-pouch really means, day in and day out.  The bottom line is that I'm tired of feeling that any part of my life is still dictated by my gut.  It's been eighteen years, the last three of which have been particularly trying, and I just feel like things should be easier by now.

Somewhere along the line, I started anthropomorphising my j-pouch by referring to it as "he" and what "J" likes or doesn't like.  So one of the most difficult things for me to reconcile when it comes to j-pouch life is that while one of my big fitness goals has been about getting cut, the healthy diet that it would take to accomplish that goal (whole grains, lots of veggies, low-carb, low-fat, high-fiber, etc.) is the exact opposite of what J likes, which means the diet that J likes (carbs, fats, no veggies, low-fiber) is pretty unhealthy.

For those of you wondering about what a j-pouch-friendly diet looks like seven months out, here is the rundown...

Foods I totally avoid:  dark chocolate, whey protein, peppers or anything spicy.  (These foods will have me living in a world of regret for a good 6+ hours if I have even a small amount.  The dark chocolate and whey will greatly increase frequency, and spicy foods will cause hellish butt burn.)

Foods I eat in very small amounts:  nuts, seeds, raw veggies, whole grains.  (These foods will cause increased frequency if I have more than a few bites.)

Foods I eat in moderation:  milk chocolate, cooked veggies, beans.  (These foods are okay as long as I don't go overboard.)

Foods I'm surprised I don't have to moderate: popcorn, carbonated beverages, alcohol, sugar, caffeine, fried foods, soy, casein protein.  (These foods don't seem to affect me much at all.)

Foods that seem to keep J happy:  bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast/bread, yogurt.  (These foods can lower water content, slow down digestion, and reduce bathroom trips.)

This makes it practically impossible to eat in a way that would be most beneficial for dropping fat, unless I want to spend all day in the bathroom.  I've been waiting for my j-pouch to mature enough to handle a super healthy diet, but every time I try to eat a diet based mostly on lean protein and veggies, J revolts.  I had been trying (again) to make this diet work for the last couple of weeks, and I ended up nothing but frustrated, disappointed, and depressed as I dealt with increased frequency, difficulty emptying, and almost constant anal pressure, which made it very difficult to motivate myself to work out.  In fact, what I was experiencing much resembled the symptoms of a stricture at the anastamosis site between the j-pouch and anal canal.  (More on this later.)  Turns out everything's fine up there - I just need to adjust my eating habits.  But dealing with these symptoms for enough hours, days, weeks in a row can really wear on a person.... And it was yesterday morning that the frustration from living like this collided with my frustration from my obvious lack of progress with my cutting goals (i.e. no loss of pounds, inches, or body fat percentage) and the fallout from that collision caused a minor meltdown.

After a good cry and processing of these emotions, the realization that I came to yesterday is that if I set my dietary and fitness goals around something that my specific health situation will constantly be getting in the way of, I will continue to be nothing but frustrated and disappointed as the two opposing agendas wage war in my gut.  Although I would still love to see myself cut, I cannot eat a diet that causes such gastric distress and expect good results.  (I've eaten no veggies for the last couple days, and all those annoying symptoms have disappeared.)  It was a pretty difficult conclusion to come to, but I figure that the only way to see real progress towards my goals and feel successful is to change my goals.  So at this point I am attempting to change my perspective.  Instead of focusing on dropping body fat, which is primarily accomplished through diet, my goals need to be less about how much I weigh and what I look like and more about about what I can do and accomplish.  Originally I was pretty upset over this since it seemed like my fitness goals were such a big part of my identity, but I need to keep reminding myself that I can still be athletic without such a huge focus on cutting.  In all honesty, this is probably a much healthier psychological outlook anyway.  My fitness plan now will now incorporate whatever makes me feel good and healthy, not what will make me look the way I want, and I will measure my progress by how much I can lift, how far I can run, how many laps I can swim, and how fast I can recover.  This change is one that will still take time to reconcile, especially since I can get quite determined and competitive when I set my mind to something, but I think it's a direction in which I will be able to find much greater success.

When I explained this all to my manfriend in the midst of my cry episode, he mentioned that it sounded like I was still grieving.  Once I thought about it, I realized he was right.  The day before yesterday I broke down and cried at the gym when it hit me out of the blue (again) that I will never have a normally-functioning digestive system in my life.  Ever.  This is something I can never go back from.  I've mostly taken everything in stride, but when it hits me like that out of nowhere, it's kind of hard to wrap my brain around.   Right now as things finish settling in, it's going to be all about learning (and accepting) what my new normal looks like.  Of course there will be some successes and some losses that I will have to celebrate and grieve for as I go.  However, I still have many things to be thankful for, and most importantly, I'm still alive.  Although I may be fighting in a slightly different direction now, I'm still fighting for it.

Feel free to leave reactions and comments below...
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