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.

Saturday, October 19, 2013

J-pouch Reality

Well, here I am over a year out from my proctocolectomy and almost a year out from my takedown.  The main purpose of this blog is to spread awareness and to reassure and bring hope and inspiration to people who may be suffering from similar conditions and might be afraid or nervous of what to expect.  For that reason I have tried to remain pretty strong and positive throughout my posts.  However, I wouldn't be doing anyone any favors if I was to totally candy-coat the truth.  Therefore, this post will be about the daily frustrations and hardships of living with a j-pouch... what to realistically expect.

Yes, you can continue living your life.  With a functional j-pouch you should still be able to work, travel, participate in sports, etc., without having to worry about suffering from malnutrition or blood loss.  However, bowel function will NEVER be as easy as it is with a healthy colon and rectum.  Below are some of the long-term effects to be prepared for.
  • Unpredictable functioning.  Frequency and consistency can change on a daily or even hourly basis with seemingly no cause or change in diet.  You can feel fine one moment and then feel like you can't be far from a toilet the next.
  • Both increased frequency as well as certain foods (certain spices in my case) can cause the infamous butt burn to return, which can be very painful at times.  It can also cause itching, irritation, and mild bleeding on and around the anus.
  • True you can eat just about whatever you want..... as long as you are willing to live with the consequences.  Certain foods (whey and dark chocolate for me) will cause significantly increased frequency to the point that I'm going multiple times per hour.  If I eat too much fiber, evacuation can become incredibly difficult and sometimes painful, with the constant urge to evacuate but inability to let much of anything out.  But if I don't eat enough fiber, consistency can become so thin that it is difficult to maintain continence.  Due to all this, diet can be a bit of a balancing act.
  • With a healthy colon and rectum you can feel the pressure of needing "to go" slowly build over the course of an hour or two, so you know when to prepare to make a bathroom stop.  With a j-pouch, it is always all-of-a-sudden.  Because the rectum wall and muscles are all gone, you don't have any sensation down there until it reaches the anal canal, which means that you can't feel anything until it's ready to come out the back door.
  • When you do have to go, although most j-pouchers can hold and control their bowels, that doesn't mean it is comfortable.  It can be very uncomfortable or even painful to hold it in when you have to go.  It is sort of like having a mild case of diarrhea at all times.
  • You have to have post-evacuation cleansing supplies wherever you go.  If I forget to bring my flushable wipes with me or if I forget to refill my travel-pack in my purse and I am away from the house, my only choices are: 1) Don't go, which can be very painful and sometimes not an option.  2) Go but don't get all the way clean, which can cause rash, irritation, butt burn, and itching around the anus.  3) Go and use regular TP to clean yourself, which for me means I have to keep wiping until I am literally raw and bleeding from my anus.  Sometimes I try to run the TP under the faucet to help clean more easily, but then the TP generally likes to disintegrate in my hand.
  • I wake up between two to five times per night to go to the bathroom, which means I hardly ever get more than three hours of sleep at a stretch.  This means I'm generally in a constant state of mild sleep deprivation, which can have an affect on mood, ability to handle stress, overall health, and eventually lifetime longevity.  I try to schedule extra sleep time at night and to catch up on the weekends by sleeping in as much as I can.
  • Increased gas.  If you've been living with certain diseases, you may be somewhat used to this already.  But gas comes  much more frequently with a j-pouch than with a healthy colon, and if it happens to be behind a small amount of stool, you can't pass it without the stool coming out too, which means I frequently run to the toilet just so I can pass gas.  In the cases that I do not have to run to the toilet to pass gas, sometimes it is smelly, and occasionally it is noisy, but most often when I pass gas, no one can hear or smell it.
  • Wherever I go, I have to be self-conscious about the noise I make in the bathroom.  Whether I'm in a public restroom, using my restroom at work (only one door between the toilet and the main hallway where students and staff are passing by), a guest at a friend's house, at my fiancee's house, or even at home with my roommate around, I know that anyone in the vicinity can hear my loud bathroom noises due to the explosive nature of the gas and stool as they exit the body.  I have to deal with this 5-15 times in a 24-hour period.
  • Almost every time I go, that same explosive way the stool exits the body tends to spray flecks of stool all over the back of the toilet bowl, the underside of the seat, and even the top of the seat occasionally.  This means that at home I have to clean the toilet several times a week (or daily if I want it to stay clean), and when at someone else's house I have to inspect the toilet behind me and use TP to wipe down any messes I've made.
  • Certain sexual positions (specifically the ones that tend to shorten the vaginal canal for deeper penetration) are a bit more sensitive/painful.  Although I have never had a leak during sex, sometimes the jostling of sex can make me feel like I have to go... rarely during but often at the end of sex, meaning I can't always just lay there relaxing and enjoying the post-coital glow afterwards.  I will usually evacuate right beforehand in order to reduce chances of feeling the need to go during or after sex.
To people who are nervous about life-long symptoms, these effects can sound like a lot to deal with.   However, it is important to remember that they are still better than living with the disease.  They are not life-threatening, and their effect on overall quality of life is minimal compared to living with severe ulcerative colitis or Crohn's disease.  I made this choice in order to save my life (which isn't really much of a choice, when you think about it), but I still don't regret having surgery because whatever difficulties I live with today are seriously chump change compared to what my life was like before my first surgery, when my UC was raging and I spent all day in bed, writhing in pain and running to the toilet 20+ times per day.  At that point I had almost NO quality of life, whereas now my quality of life is fairly high.  Again, it will never be quite up there with someone who was never diagnosed with a disease like this, but it is certainly the best I can hope to expect with the circumstances I was given to deal with.

On more of an athletic note, I have been feeling somewhat apathetic regarding working out the last couple of months, and I'm not sure why.  I think it's been due to accepting the long-term effects of life with a j-pouch as well as dealing with my other health concerns (mainly the tumor in my kidney and it's testing and treatment).  However, in the last week I have felt a growing determination to regain my prior level of fitness, muscle development, and strength, and so I have fresh motivation to jump on and stick to my workout routine yet again.  Yes, it will be a little more challenging with a j-pouch, but it is by no means impossible.  Starting this Monday I will be attending a dance class, attending a yoga class, strength training, and running again all on a weekly basis.  I'm ready to feel like a fighter again.

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Friday, September 13, 2013

J on Wheels

(Click on any image for an enlarged view.)

















Pulling all my old roller derby gear out of retirement.


I'm the one in the striped thigh-highs with the #3 on my helmet.                                




















Dancing and workin' it out on my skates, trying to help
my team raise enough money to go to nationals.

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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.



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Monday, July 1, 2013

Reconciliation

  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.

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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.)
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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.


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Thursday, April 25, 2013

The Adaptation Period

I finally get to change my tummy pick from sad to happy!
(Ipod Shuffle still attached from today's run.)
First off, I have to apologize to my loyal readers that it has been over two months since I've updated my blog.  I have been meaning to publish another post about life with a j-pouch for over a month now, but I honestly have been too busy enjoying life!  I have so many exciting things to share with all of you about what I've been up to since my last post that I'm having a hard time trying to figure out what to talk about first!

As some of you already know by now, doctors and experienced j-pouchers will tell you to hold any complaints or freak-out moments regarding results of the surgery until after the five-month mark.  The reason is that a brand new j-pouch has to go through an adaptation period.  During this time the j-pouch has to learn its new function, which involves a couple of changes.  First of all, since the j-pouch is made from small intestine, who's normal job is to push food through constantly, the j-pouch has to learn that it is the new end point and that it does NOT need to push food through but rather store waste.  Secondly, the small intestine learns to absorb more water in order to pick up the slack of the missing colon.  Thirdly, the j-pouch will grow and expand to fit the needs of its new function.  And finally, it needs to finish healing and re-establish a healthy balance of intestinal flora (healthy bacteria that helps to break down food).  Much of this change happens within the first five months or so, but the j-pouch can continue to adapt and settle in for up to a year or more.  Right now I am about four and a half months out from my takedown, and here is how I am doing on all the main points that future j-pouchers seem to be curious about.

Bowel Schedule & Sleep:

Since my last post, my BM's have become more predictable.  I go probably about five times per day, slightly more if I eat something my j-pouch isn't crazy about, so it typically stays between five and seven.  My biggest complaint about j-pouch life used to be that I woke up one to three times a night to use the bathroom, which disrupts my sleep cycle.  (And when I get up to go, it's not like I can just stumble to the john with the light off, pee, and go back to bed.  Getting fully clean after a j-pouch evacuation requires light and attention, which means I have to wake all the way up, after which it is sometimes difficult to fall back asleep.)  For a few months these nighttime BM's were on a pretty regular schedule: once between 1:00 AM and 2:00 AM and again between 4:00 AM and 5:00 AM, sometimes more if my j-pouch was feeling unruly.  This meant that I never felt quite rested; I couldn't sleep in, and I worried that I would never get a solid night of sleep again.  However, I am proud to announce that over the last couple of weeks that schedule has been slowly stretching out until the last three nights I have actually slept through the night without waking up!  This seems to be my new schedule, now: getting a solid night's sleep.  Wooo-hooo!!!  For those of you who don't know me, this is a HUGE win for me.  I am SO excited about this sleep thing.

Diet:

I mostly eat whatever I want without having to worry much about what will happen to my gut.  However, there are a few things I have to make sure I eat in moderation, or I may end up with extra bathroom trips that night.  I still don't eat too much fiber, but I am very slowly bringing it back in.  I have noticed I can eat cooked veggies without much trouble (soups, stir-frys, etc.) and I can eat small amounts of raw veggies, like the amount that would be on a burger or a small side-salad.  (I did try a large salad right after my last post, and my j-pouch didn't like it, so I went back to avoiding raw veggies for a while.)  My goal is to be able to eat full salads by summer.  I can have small amounts of nuts or seeds as long as I don't overdo it (a handful of nuts, but not two).  I was previously avoiding chocolate since it stimulates the bowel, but I have found just within the last week that my j-pouch now tolerates small amounts of chocolate just fine.  In the past, I have used Imodium before drinking alcohol, but the last time I went out I did not take any, and I had three rum drinks with no ill effects and maybe only one extra bathroom trip that evening.  (I did notice, however, that I got pretty buzzed off those three drinks, letting me know that it was the Imodium that was giving me the sky-high alcohol tolerance I described in my last post.)    Other than that, I have no limitations on what I eat.  I am hoping that the few foods I still moderate will become more tolerable over time until eventually I am eating whatever I want whenever I want.

Work:

I returned to work full time on February 19th, which was just over two months after my takedown.  (I would have been able to go back sooner if I hadn't had so many complications after my second surgery.)  Although I enjoyed being back at work and interacting with students, I have to admit that it was quite exhausting at first.  Before my surgery, I was incredibly ill with UC, and as soon as I healed from surgery one I was back in for surgery two.  So with everything combined, there were about five months during which I spent the majority of my time in bed.  This alone, I believe, contributed hugely to my exhaustion in coming back to work. Teaching is an exhausting job to begin with, and the first couple weeks back from summer break (which is two months long) are usually tiring, so coming back from this was even worse.  However, I slowly built up my strength and endurance, and now I'm teaching energetically all day, just like I was back in my healthy days before all this happened.  I have no bathroom issues while at work.  If I do ever feel the need to go, I can hold it as long as I need to until it's convenient.  I am usually at work from around 8:30 AM until about 4:00 PM, and I usually go once during that time, either at lunch or right after school is out.

Exercise:

Because it took a while to recover from my complications, and then it took a while to adjust to being active and back at work full time, it took me much longer to get back into exercise than I had hoped.  However, a few weeks ago I did start adding some workouts after work, and now I am working out four to five days a week.  I am running two to three times a week, though not very fast or very far (under 2 miles) since I'm dealing with shin splints and feeling that old ankle sprain acting up, but I have learned to start my running practice very slowly before building up and adding mileage.  Consistency and perseverance are what will get me there.  I'm also doing strength-training two or three times a week.  I'm still working on building a foundation all around since I've been out of the game for so long, but I am excited to be back in it full-swing and love feeling that endorphin rush from pushing my body to its limits.  My body seems to be responding pretty quickly now that I'm off all those awful drugs (prednisone, immunosuppressants, etc).  Sometimes the gravity of the bouncing (during a run, for example) or the flexing and exertion of weight-lifting can cause me to feel like I have to go, but again, I can always hold it until the end of my workout, even when I'm working out in my home gym.  I also plan to resume my yoga classes, roller derby sessions, and dance classes in the near future.

Dating and Sex:

Another exciting thing that has happened since my surgery includes advances in my love life.  Once I was off of all drugs and free of post-op complications, I started looking into dating again.  Coincidentally, the first man I went on a date with turned out to be totally amazing, a person I see as my perfect match after so many years of searching for the right one.  We have become quite serious very quickly, and I'm loving every minute of it.  A lot of people (females especially) want to know about sex after j-pouch surgery.  Well, my sex life is amazing, too.  I can assure you that even with a very wild and kinky sex life, everything functions just as it should in every position imaginable.  In the beginning, I would occasionally feel the need to go a few minutes after finishing intercourse, but never during... and I haven't even noticed that happening for quite a while now.  And no, I have NEVER experienced any leaks during exercise or sex.

Other Fun Stuff:

My new baby: a V-Star 650 Classic.  :-)
I have also been going out to social events, eating at any restaurant without hesitation, travelling short distances to visit family members, and basically living my life to the fullest.  I took a motorcycle riding class over spring break and bought a new motorcycle the next day.  It's something I've wanted to do for many years, and now I can.  I've been learning to ride and LOVING it.  I've been riding to work for a couple of weeks now, and I'm just about ready to start taking it out of town.  My new man-friend and I have also been planning vacations: backpacking trips, cruises, etc.  I have no doubt that this summer will be packed with fun excursions and adventures.

Healing Scars:

These pics were taken April 8, 2013, two and a half weeks ago, which was just over six months after my first surgery and exactly four months after my takedown.  Feel free to click on the image for a larger view.

This is a shot of all five scars.  Some of them are barely visible, especially in photographs.  Scars 1-3 are from the laproscopic incisions from surgery one. Scar 4 is where my stoma used to be and was closed at my takedown, and scar 5 is the longer incision where they created the j-pouch during surgery one.  Below are close-up shots of each.





Incision one is towards the center of this photograph, barely visible.  The dark spot you see to the bottom left is where they inserted the drain in my side during my hospital stay due to the complications of my second surgery.  This would not have been there under normal circumstances.


Incision two is inside my belly-button.  You cannot see it in the photo or in real life, even if you stretch and peer inside, LOL.  What you do see here above my navel is the scar from where I used to have my belly-button pierced many years ago.
 Incision three is towards the center or bottom left of the photograph.  This was originally a laproscopic incision, but it is more visible than the other lap scars since it was also the site where my JP drainage tube was left in for eleven days after my first surgery.  The dark spot you see in the upper right is where they had a drain inserted in the hospital due to complications from my second surgery.  Again, that would not be there under normal conditions.
Incision three used to be named Stella (my stoma).  This is where my ileostomy was for ten weeks between the two surgeries.  This is the only incision they used during surgery two... They just stitched the small intestine back together, poked it back in my abdomen, and closed me up.  The resulting scar is about two inches long.  The blob you see in the middle is because a piece of the end stitch from inside where they sewed my ab muscles closed was poking through the skin incision during the healing process.  (It was all covered with bandages in the hospital, so I didn't realize it until it was too late.)  It healed that way, and eventually the inner stitch slowly dissolved over time, leaving this darker spot in the center of my scar.  If the stitch had been left inside and under my skin as it should have, this scar would look more like a straight line.

Incision five looks somewhat like a c-section scar.  This is where they opened me up to create the j-pouch during surgery one.  It is three inches long.  It healed up beautifully and is barely visible now, as you can tell from the photograph.





In Conclusion...

So here I am, about six months after my first surgery, back to living a fuller life than I ever had since my UC diagnosis turned severe.  I am a very happy j-poucher and haven't regretted my decision for a single second. I am very optimistic about my future and would be happy with the way things are now, but I know they will continue to slowly improve even more over the next few months.  I will probably start writing less and less now that I'm getting busy with loving life again, but I will try to check back in every couple months or so.  The next time you hear from me will probably be during summer break.  Until then....  keep on fighting the good fight!  :-)



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Sunday, February 17, 2013

Back to Life

  BRAT diet = Bananas, rice, applesauce, toast.  Refers to a diet of these specific slowing foods but can also include   bread, pasta, and other white carbs or bulking foods known to slow the bowel.  
  C. diff = Clostridium difficile.  A type of intestinal bacteria, an overgrowth of which can cause severe diarrhea.  
  Butt Burn = The pain and intense burning sensation of the skin around the anus from the irritation that is caused by   the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery .  
  Pouchitis - Inflammation of the j-pouch, usually due to an overgrowth of bacteria and easily treatable with a round of   antibiotics.  
  UC = Ulcerative colitis, a disease of the large intestine that causes inflammation and tiny bleeding ulcers that cover   the intestinal wall.

Well, I was not successful with my goals from a month ago.  In the days following my last post, I discovered how truly unpredictable this recovery process is.  Occasionally I would have a good day, but more often than not, I would spend most of the day in bed either due to withdrawal symptoms from the prednisone and Norco (lethargy, fever, chills, intense headache) or my j-pouch acting up with urgency, diarrhea, pressure...  I found it impossible to make plans - fitness, social, or otherwise - because there was no telling how I was going to feel from day to day, hour to hour.

I had been waiting to be done with antibiotics because I heard that they can sometimes cause diarrhea.  So I thought that my j-pouch function would improve when I came off of them.  Unfortunately, it was the opposite.  As soon as I stopped the antibiotics, I had uncontrollable diarrhea regardless of what food I ate or what drugs I took.  Before this point, I could somewhat predict or control my j-pouch based on whether I had any foods that cause urgency (chocolate, alcohol, caffeine), or when I took my Norco, since narcotics act as a bowel-slower.  But no matter how much BRAT food I ate or how recently I took the narcotic, I was running to the bathroom with pure liquid BM's.  I had way less control than I did before, and this was the only occasion that caused a bit of anal leakage since my surgery.  In addition, the frequency and consistency of my BM's brought with them some of the worst butt burn I've experienced yet.  During this time, I was going about 10-12 times a day, running to the restroom instead of being able to hold it until it's convenient.  I read that the most common cause of antibiotic-related diarrhea is C diff (an intestinal bacteria), and I also know that these can be symptoms of pouchitis (bacterial infection of the pouch).  So when it lasted longer than a couple days, I called my nurse at UCSF.

Prescription narcotics and Imodium (Loperamide) both help
to slow the bowel and reduce number of bowel movements.
According to her, this j-pouch behavior is perfectly normal when coming off of antibiotics.  She ordered a C diff test for me anyway just to reassure me (which came out negative), but she told me not to worry since this is all still within the normal range of j-pouch adjustment and adaptation.  Another friend with UC told me that the same thing happened to him when he came off antibiotics, and the effects lasted a couple weeks.  So I just put up with it, hoping things would improve soon.  What helped is if I took my Norco along with two Imodium as soon as I woke up.  Then within an hour things would slow down a bit - enough for me to feel a little more comfortable laying around but not enough for me to feel confidnet leaving the house.  Sometimes I would take another one in the afternoon if things were bad, and then  I would take the same doses before bed.  Going through this process was a bit of a pain, but true to form, these symptoms died off in just under two weeks.  I had also started taking probiotics a couple days before things improved, so that probably also played a role in getting my j-pouch to behave again.

On another note, I had an appointment with the urologist in regards to the lesion on my kidney and found out there is an 80% chance that it is cancer, so during the whole appointment, the doctor spoke and planned as if it was cancerous.  However, the tumor is still very small and non-aggressive, so there is very little relative risk, especially now that we know it is there.  Since radiation and chemo do not reach the kidneys, I won't be doing any of that unless it was to spread to other parts of my body, which is highly unlikely (less than 5% chance with how small it is).  So there are three main treatment options: 1) open surgery to remove that part of my kidney, which would leave a big deformed scar on my side,  2) laproscopic surgery, which would normally be the most ideal route, or 3) a long needle through my back to freeze and kill the tumor.  Because of my previous surgeries and infections, he would not feel confident performing lapro surgery on me with all the scar tissue and adhesions I probably have going on.  So he is recommending freezing it with the needle.  This method is 5% less effective than surgery, but if it doesn't work, we can always try it again or opt for open surgery later.  Either way, we decided it would be a good idea to make sure my body is fully recovered before treating the cancer, so summer break sounds like a good time to start treatment.   It seems a bit counterintuitive to know I probably have cancer and just sit on it for several months, but the doctor does not seem at all worried.  He said it's perfectly reasonable to wait 3-6 months.  The doctor did agree, though, that because this type of cancer has no symptoms, if we never found it on the CT scan like we did, then we would have never known it was there until it was way too late... so I'm still considering myself a lucky lady.

Overall, though, I have been doing well.  The last week or so things have been returning to normal.  My latest blood panel (CBC) came back normal, and this is the first time that I don't have some sort of complication (incision, blockage, infection, withdrawals, j-pouch adjustment symptoms, etc.) bringing me down.  I do have another ultrasound next week to make sure the inflammation in my uterus is gone, but the last few days are the most normal I've felt in a very long time.

Today's lunch: adding fiber back into the diet.
Currently I am not taking any bowel slowers on an average day, and I am even adding a lot more fiber to my diet: whole grain bread and small salads with dinner, soon to be increased to full salad meals (starting today).  My frequency is an average of about four times a day (in 24-hrs) if I'm behaving myself, or seven times a day if I eat something like chocolate or alcohol, and I am back to having total control - no leaks, no urgency.  This is all perfectly normal and acceptable to me.  In fact, last night I went out to the bar with my roomie and had five or six rum drinks, taking two Imodium around the time I started drinking, and suffered zero ill effects in the morning.  No increased frequency and no hangover.  One thing I did notice, though, is that the rum didn't affect me as much as I thought it would.  Since I haven't been drinking hardly at all in the last five months, I figured my tolerance would be pretty low.  I don't know if my tolerance just never dropped, if the meds affected it, or if the way I absorb and process alcohol has changed since I lost my colon, but I was just a little buzzed off of those six drinks - not tipsy, not drunk, just buzzed.  This is not a problem or anything, just an observation.  I had a good time either way and am happy I was able to go out and enjoy myself without suffering for it the next day.

Baby wipes and ointments can
also help treat butt burn.
The COCO 9500R bidet:
cleaning with a spray of
water after you go can
help treat butt burn.
Just as a side note, at home I have been alternating between using the bidet (a top-of-the-line COCO bidet with a remote control), baby wipes, or regular TP depending on how my butt feels, as well as rotating between A& D ointment, Aquaphor, or using no ointment at all.  I also always make sure if I leave the house that I have a mini-ziplock of baby wipes and a mini chapstick-sized tube of Aquaphor in my purse.  These come in very handy, as public restroom TP tends to be pretty thin and rough.




Anyway, I am so happy to be feeling back to normal, and I think I'm about ready to get back to my life.  I start back to work on Tuesday, and I'm confident that I'll be able to handle it just fine.  I'm also ready to start working out again and plan to add that in daily after work.  I have been waiting for this day for so long... Time to start living, time to spark up that fighter spirit again, and I'm so excited.

P.S. - Here is the latest pic of my healing scars.   (Click on the photo for an enlarged view.)  I didn't bother trying to get a pic of the laproscopic ones since they are almost invisible now.  In a month or two down the road I will do another post all about the healing incisions and will get a close-up of all five scars for ya.  But so far you can see how much the lower one has faded; I expect the stoma scar above it to do the same in a few weeks.
Healing Incisions: 2/17/13.  The three-inch scar along the panty-line is from
surgery number one (10/4/12 - just over four months out), and the two-inch stoma scar above it is
 from surgery two (12/11/12 - just over two months out).  The lower one is normally covered
by my underwear, and the higher one is normally barely below my pants-line.

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Saturday, January 19, 2013

Transition

  anastamosis = surgically attaching two parts together through either hand-sewn or stapling techniques  
  butt burn = the pain and intense burning sensation of the skin around the anus from the irritation that is caused by the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery  

"If anything can go wrong, it will go wrong."  - Murphy's Law

I'd like to say that when I got home from the hospital, everything finally started going smoothly, and I hit the ground running.  The truth is, though, that I've still been experiencing more complications.  But we'll get to that in a minute.  First, a little celebration.

As soon as my parents drove me home, even though it was January 5th, we celebrated Christmas: I made some hot cocoa and Mom put on some Christmas music while I opened my stocking and all the presents sent to me from from family.

Who doesn't love opening Christmas presents?
Thanks everyone!
A poster for my classroom.... Hehe.  Appropriate, no?



When "Christmas" was over, I took a long-overdue and much-needed shower.  (I hadn't been able to take a full shower since my surgery due to bandages, drains, and PICC line, so this was a luxury.)  Once I was nice and clean, my parents treated me to a belated birthday lunch (my birthday passed while I was in the hospital) where I ate a meal of carbs and fried foods, which my j-pouch handled just fine.  Then, after stopping by the pharmacy, we went grocery shopping to stock my kitchen full of pouch-friendly food before my parents had to hit the road and head home.
All cleaned up and ready
for my first outing sans bag.

Mmmm.... Comfort food.  Happy birthday to me.









It was a very fun day, but by the end of it I was exhausted.  As I started adjusting to life back home, I was VERY happy to have my own bed, my own toilet, my trusty canine best friend by my side, and as many undisturbed hours of sleep as I wanted.

For the most part, my j-pouch has been behaving exactly as I would expect at this stage. Even better, actually, since I can pass gas easily in any position and have had zero anal leakage.  I have complete bowel control and can hold it pretty much as long as I need, same as when I had a healthy colon.  When I gorge myself on Christmas chocolate or have an alcoholic beverage, which both stimulate the digestive tract, then I will go way more often, and it feels more urgent; I will also get the sensation that I have to go even when there is little-to-nothing there, and the frequency and softer stool cause me to get the infamous butt burn, which can be pretty painful.  However, if I stay away from chocolate and alcohol and make sure to include some slowing foods in my diet (bread, pasta, rice, peanut butter, cheese, banana, Metamucil wafer), then things slow way down, and the butt burn disappears pretty quickly.  Regardless of what I eat, though, I'd say my frequency pretty much stays between five and ten times a day, though once it was more than that, and a couple days ago I only had three bowel movements in twenty-four hours.  It's important to keep in mind, though, that almost every time I sit down to pee and relax those muscles, a little comes out of the j-pouch which means I have to count it as a BM.  According to experts, the average healthy person urinates every two to four waking hours, which totals six to eight times a day.  So I'm not actually going to the bathroom any more frequently than an average healthy person.  I know as my j-pouch continues to mature and adapt, the frequency, pressure, and butt burn will all continue to die down over the next several months (even when I eat chocolate, LOL).  I will also be interested to see how things change as I introduce more natural fiber into my diet by eating veggies and whole grains again, which will happen slowly over the next couple weeks. Overall, I'm satisfied with my pouch function at this time.

Okay, now for the additional complications.  A couple days after I got home, I felt really backed up and bloated, like there was gas and food in my belly that just wouldn't pass.  My tummy was uncomfortable and tender to the touch.  When it didn't go away, I started purposefully doing things I knew would help clear me out: walking, heating pad, Gas-X, chocolate, and eventually even herbal laxative tea... Going to the bathroom helped a little bit with the bloated feeling, but nothing really worked.  After four days of going to the bathroom and passing gas but no relief from the bloating or pain, I also noticed that the tender spot on my belly hadn't changed or moved at all, and I started to realize this wasn't just constipation.  It felt like another abscess or fluid build-up, so I called my surgeon's assistant and explained everything.  

They sent me in to my local medical center for a full CT work-up.  I had oral, rectal, and IV contrast.  (Yeah, they still call it "rectal" even though I don't have a rectum.)  In addition to looking for an abscess or whatever was causing the painful bloat, they wanted to check from both the top and bottom for any leaks in my digestive tract that may be the root of the problem.  Well, the CT did not show any leaks or any fluid build-up.  According to the nurse that called me with the results, what the CT did show was inflammation around my Fallopian tube and uterus and a good amount of air trapped in my abdomen where it didn't belong.  This could be potentially harmless or potentially very dangerous depending on the circumstances.  Since it was the end of a Friday when the nurse called me with the results, and since I wasn't having any other symptoms or signs of infection, the plan was to start antibiotics right away to head off infection (one of the potentially dangerous outcomes), and to do a repeat CT in a week to see if there was any change, followed by an appointment with my surgeon.  The hope was that my body might absorb the air and resolve the issue on its own.  Meanwhile, if anything got worse or if I had any sign of infection, I was to go straight to the UCSF emergency room.  Luckily, it never came to that.

After a little research on the topic, I figured that the air may have gotten there from the removal of the drainage tube leaving an open pathway into my abdomen since I was on steroids, which could have prevented healing.  My surgeon agreed that was a possibility until she saw the scans herself.  Yesterday I had my repeat CT, and after she looked at and compared both the scans, she came up with a different scenario.  According to her, the air on my scan from a week ago appears to be not free-floating in my abdomen but actually inside my Fallopian tube and uterus.  After scratching my head for a second, I asked her how in the world that could happen.  She said that she can see the part of my intestine where she removed the stoma and stapled the ends back together (anastamosis), and it happens to be sitting right up against my Fallopian tube.  She figured that from the beginning there was maybe some microscopic leak at the anastamosis site that hasn't been showing up on any of the CT scans.  It's obviously not big enough at this point to leak waste into my abdomen, or we'd see evidence of that - things would be going terribly wrong right now.  But a tiny microscopic leak like what she's suspecting could have been the source or cause of the infected abscess in the hospital as well as the current collection of air.  Apparently, the air could have exited the intestine via the leak and then entered the Fallopian tube via the little "fingers" that are meant to catch the egg as it's released from the ovary.  She said the chances of that happening are like one in two million, and she's only seen it one other time in her career, but that's what the evidence is pointing to.  However, the good news is that the most recent scan shows less inflammation and a significant reduction in the amount of air.  (There is one bubble in my vagina now - apparently it's working its way out, LOL.)  So we're hoping it will just continue to resolve on its own.  The microscopic leak should heal itself as the scar tissue grows around the staples (which could have already happened), and hopefully my body will either push out or absorb whatever air is remaining.  She extended my antibiotics for another three weeks and told me to call and check in two weeks from now.  If my symptoms are gone, they will assume the issue has resolved itself.  If I have any worsening symptoms, or if something doesn't feel right before then, of course I'm to call in again so we can decide a different course of action.

On a pretty unrelated topic but still relevant to my health, my very first CT scan that I had to prepare for my first surgery back in October revealed a small lesion on my right kidney that I was told needed to be followed up on after my surgeries were over.  So last week I scheduled a doctor's appointment for it while I was still on medical leave and before I forgot all about it.  My doctor said it was most likely a harmless cyst, but she sent me for an ultrasound just to double check.  Well, it wasn't a cyst.  It was solid.  According to my doctor this means it's most likely a benign tumor, but there is a chance that it could be cancer.  It needs to be biopsied to know for sure.  So she's sending my records over to a urologist in Sacramento who will either schedule an appointment for me to see him or just tell my doctor what type of biopsy procedure should be done at my local medical center.  I'm thinking most likely the biopsy will involve a very large, CT-guided needle inserted into my abdomen.  Great - more abdominal procedures.

When I heard the news about the tumor, I figuratively threw my hands up in the air and said to myself, "This is EFFING RIDICULOUS!"  (Only I didn't say "effing".)  When it comes to my health, my whole family knows that my body has always played by Murphy's Law, but there is only so much that one person can take.  After remaining positive through an awful disease, immunosuppressants, major surgery, and all the unlikely complications that happened following another surgery that was supposed to be quick and easy, I now have to deal with this??  (Not to mention all the other random health-related issues I've dealt with in my past... This is not my first tumor.)  So I had a short, mopey afternoon of "this isn't fair" and then - true to my nature - I turned it around.  I realized that IF this does turn out to be cancer, I am actually a pretty lucky lady.  If I had never had a health condition that required surgery, I would have never had a CT scan.  And if I had never had a CT scan, I would have never known about the tumor until it somehow became symptomatic... and by that point it would have had to be pretty damn big and probably metastasized.  It would be much more difficult to treat, probably requiring surgery, radiation, and chemo... or it could have potentially been even too late for that to work.  But right now it is small (1.6 cm) and according to my doctor would be very easy to remove if it came to that.  So if the biopsy reveals a worst-case scenario in  this particular situation, it would still be a best-case scenario in that situation.  Capiche?  So we're keeping our fingers crossed, but whatever happens, I know I will come out okay.  I've gotten through everything else; I can get through this, too.  It's what I do.

On a lighter note, I've been starting to feel like too much of a slug after four months of laying around, and I'm out of excuses to remain in bed, so I'm gonna put a little structure to my day starting on Monday:

  1. I'm going to start taking my melatonin at night again to get into a normal sleep cycle and be able to wake up and be more alert and motivated during the day.  More waking hours out of bed!
  2. I am going to eat healthier now that my food restrictions are up.  Veggies, here I come!!  (Oh, how I've missed you!)  Breakfast, lunch, and dinner will be planned out, and no more junk food except planned "cheat days" (calorie cycling).  My body is destroyed right now, and I need to provide it with the right building blocks to get healthy again.  Plus, I have been gaining weight quickly since discharge, and I want to turn the direction of this train around from destination flab-town to destination fit-city.  
  3. I'm going to start each day with some gentle exercise.  (Haven't been doing ANYTHING lately since the air in my uterus has been too uncomfortable/painful when I move, but that's oh-so-slowly letting up.)  I'm going to re-start my gym membership that I froze back in September so I can go to yoga classes and start slow swimming again in addition to walking and some gentle strength-building calisthenics at home.  I'll put together a schedule of alternating exercises for each day.  When I slow-jogged one mile a week ago just to test the waters, I found that I am not just at square one, but somewhere well-before square one, like square negative five, meaning my body is in worse shape than if I'd just been inactive for a year.  My joints, muscles, and cardio were all really tore up by the end of one 13.5-minute mile... It's going to be a good while before I'm ready to run again.  So REHAB here we go!
  4. Will try to do at least one productive thing each day, whether it be an errand, chore, DIY project, art, socializing, writing, shopping, etc.  I want to try out some stuff I've been pinning on Pinterest, so I figure this is the perfect opportunity.
And that's it: sleep, food, exercise, activity.  Of course I will start out really slowly with all of this, but hopefully it will build momentum pretty quickly.  It's been about six weeks since my second surgery, so it's time to start engaging in my life again.

My bedroom door: displaying all the get-well cards and good wishes
 people have been sending me over the last few months.  I am loved.


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