Sometimes, There are Things I cannot Blog About

It happens every now and again that there are large things happening in my life that I cannot talk about publicly in such a place as this blog.  This can be for a good handful of reasons including, but not limited to, the following:

• It's not my story to tell
• It involves personal information from someone that I cannot mask well and/or do not have permission to post (which can also include not wanting to put that person in a place where they are not comfortable with saying yes but don't want to disappoint me)
• I can't find a coherent way to approach something that needs a lot more delving, that the thoughts won't organize for some reason
• There are elements that affect my job that I cannot discuss publicly
• There are elements that affect my personal relationships that I cannot discuss publicly

I have a weird cognitive dissonance when it comes to these reasons and my personal blog.  On the one hand, this is my blog, where I reserve the right to say what I will.  On the other hand, there are still boundaries (personal, relational, and social) that I need to respect.  There have been big things in my life recently that I have not been able to work through as a result of this tension.  My blog is one of my favorite tools for processing some of these big life things.  When the nature of those things means that they cannot be posted for the above or other reasons, I feel stuck.  Yes, I could absolutely write something up and not post it, but I do very much covet my writing time as it stands--it's difficult to dedicate the small writing time that I have to work on something that I cannot share, possibly ever.  There would still be merit in the creation and the processing, but if I can at least ensure that I have something for my self-imposed deadline first, that's where I tend to direct my energy.  

BUT I do have something now that I can finally discuss:  I have applied for, interviewed, and have since accepted a promotion at work.  I am a team manager now.  There's a lot to unpack in that.  I feel that I'm a healthy level of excited and anxious, that I have an idea of what I'm getting into and  will find a few surprises yet.  I am confident in my ability to figure things out as I go and to be cognizant of the politics of it all; I know there are going to be a few stumbling moments as I get my feet underneath me.  

I'm frustrated that it wasn't something I felt I could discuss here.  I wanted to bring folks in on that thought process, to talk about why I was thinking about it, what I was excited about, how the interview went, how as the time stretched out to hear back I was certain that they had offered to another applicant, and the swirl of emotions when I was asked with no additional context to call the branch manager when I was able to (I was onsite all last week), knowing that it was really good or really not.  There were probably a few social boundaries that I could at least bend a bit, particularly considering that I was applying within my same company (and a number of internal folk had already asked me if I was planning on applying for it, when our existing manager retired), but there was an element that felt should be hush-hush, at least publicly.  I talked about it relatively freely with anyone that asked, though.  So I was being very honest with anyone that asked the right questions but not broadcasting anything, in short.  

It feels weird to not discuss something this potentially huge on my blog, while at the same time I understand the reasons not to.  But I'm very relieved to be able to discuss this much more openly and share in this new opportunity.  Inevitably this will beget some of the same problem, where I want to share my experiences as I figure things out, but I also will not be able to reveal specifics, protect privacy of individuals and districts I work with, or discuss internal company concerns.  I recognize that's baggage I'll carry no matter where I work.  There will be times when I choose to bend those unwritten rules (though outright ignoring them is unlikely) and times when a filter is more necessary than I would like.  

For now, at least, I can stop hiding this piece of it:  manager training officially starts today!

Updates to our Home!

Andy and I are steadily asserting our personality into our home, making changes and venturing into decorations and the like that reflect us and who we are.  We're getting bolder as we go.  It started with a bit of painting.  Then, a couple of adventures in plumbing fixtures, minor first and then something a bit larger.  Those small changes though, definitely encourage me to keep thinking further.

Final Step:  BASK

We cut pieces out of the baseboard and trip of a room to put up a Murphy bed--we finally have a guest bed again!  This is a LOT more than a couple of picture frame nails in the wall.

Hidden bed is hidden. :)

There are two large projects that occur to Andy and I:  firstly, we want to build a closet space in our bedroom.  Originally, the master bedroom was upstairs, but we had a vision for the guest bed space they had in the basement, mainly extending it out and also granting us main access to a bathroom, instead of theoretically sharing it with the other bedrooms.  I especially needed the comfort of the latter.  Building a closet shouldn't be too bad in terms of cost and time, just the deciding and a bit of rewiring before the studs become actual walls.  I think the framing could easily be done in a day, but the rest might be over a few weeks, stretching out as time necessitates.  I have barely considered what color we should paint it.  The idea, though is sound:  we're extending out on a wall that is just dead space right now.  It should work like a dream.  It'll be annoying to do (like putting in 110 individual stencils on a wall kind of annoying) but not hard.  

But the second idea, that's a bit more ambitious.  The downstairs bathroom is a hallway that happens to have plumbing elements.  

Functional but not exactly exciting

We want to extend this out, blowing out the wall just next to that new closet and extending into that room's dead space, and give ourselves a larger, nicer bathroom.  For as much of my life as I need to spend in a bathroom, I want to enjoy this space at least a little bit.  We're thinking freestanding tub and separate shower.  And, yes, we're finding very quickly that if we wanted to sink a lot of money into this, oof, we certainly could.  This is definitely a long term project.

In addition to asking myself what I wanted in this space, I then began to think of my own personal needs in this camp--what would I like to make my life easier?  I want somewhere to keep all of my ostomy supplies and to have sufficient counter space to prep and perform bag changes easily.  Good start, sure.  But can we take it further?

Currently, when I empty out my ostomy bag, I squat or kneel in front of the toilet, balancing as I open the end closure of the bag, and empty it into the bowl, as close to the water as I can to keep splashback to a minimum.  My knees are not going to tolerate that forever.  What kind of fixture or addition could I add to make this process easier?  Springing off of the last blog post, how can I actually design this bathroom for me and my future needs?  Could I retrofit a bidet of some kind at waist height to clear these parts out?  Or maybe another hovering toilet that is elevated on platform that is open on the side?  Maybe a toilet on a pedestal where there are no steps on one side?  I honestly don't know.  We've got some time to figure it out, but I want to put a lot of thought into this.  This is a facet where I don't care about resale value.  I don't have any bathroom in the world that is designed for my ostomy needs--why not create one in my own home?

Any ideas are welcome, folks!

Bathroom Wars

I don't care much for passive aggression.  It rankles me in particular ways.  Couple that with some sensitivity regarding my needs for the bathroom, and, well, we have an incident.  

Our office shares the bathroom with two other companies, which has four stalls and two sinks.  I have a favorite stall in the bathroom at the office.  Everyone has a favorite stall, I think, even if no one talks about it.  I like the first stall, for no particular reason except that it's my usual stall.  I sat down one day recently and noticed that there was a notice taped to the back of the door:

"Sometimes a second flush IS necessary..."

I was instantly furious.  It still pisses me the hell off.  

In the first place, yes, that's passive aggressive.  The intent is to shame someone into behaving a certain way instead of making a direct ask.  The emphasis on "is" and the ellipsis, yeah, it's definitely doing that.  It is implying that there is a correct way to behave and expecting you to adhere to an unwritten rule.  Strike one.

Part the next, I took this as a personal attack immediately.  That's on me, but here's why:  I have not had a "solid" poop in eight-plus years.  Truly.  Think about the last time you had diarrhea--did everything go down the toilet the first time you flushed?  Maybe, maybe not.  I do not have two feet of large intestine, meaning that my stool is ALWAYS loose.  Always.  Permanently and forever.  In order to get it to flush in its entirety, I would literally have to stand there and flush about five times or come back in twenty minutes after everything had "settled" for a second flush.  This is common for me.  I'm aware of it.  I'm frustrated by it.  I'm sensitive to it.  This is how my body is.  Strike two.  

To anyone thinking "what's the big deal?  Just flush it again."  Firstly, I'll flip that question around:  why doesn't the next person just flush it again, if it's not a big deal?  If it's "no big deal" then why is this even an issue enough for someone to put up a sign?  Okay, if we agree that it's a big enough deal that needs to be addressed and it's my poop ergo I should monitor it and make sure it goes down?  I refer you back to the previous paragraph--either I'm wasting a lot of water or a lot of time to go back an ensure that this toilet is flushed.  I still have other things that I need to accomplish in my day--I cannot take a half-hour bathroom break in the middle of our busy summer season or any work day, for that matter.  But here's the REAL issue--one more thing to anyone else might not seem like much, but to me, one more thing that I have to monitor in the bathroom is HUGE.  

When you go to the bathroom, what do you worry about?  These are what I remember thinking about:

• Is there a free stall?
• Is there toilet paper in my chosen stall?
• Where can I put my phone down so it doesn't fall?
• How can I pull down my pants/skirt/whatever so that my clothes aren't touching the floor of a public restroom?

The list I worry about now is much more expansive:

• Is there a free stall?
• Is there toilet paper in my stall?
• How can I pull down my pants/skirt/whatever so that my clothes aren't touching the floor of a public restroom?
• How can I hold up my shirt/dress/skirt/whatever so that I can access my ostomy bag and not drop it into the toilet water while I'm managing my bag?
• Do I need to empty it or just vent air out of it?
• Does the stall have enough room for me to tend to everything?
• Shoot, is that a leak?
• Who could I grab right now if I needed my emergency supplies?
• Do I have time to do a bag change now if I needed to, with my work obligations today?
• How close do I need to get to the toilet water to avoid splashback?
• Am I accidentally going to spill the entire contents of my ostomy bag on the floor/my shoes?
• Am I accidentally going to spill the contents of my ostomy bag on the toilet in a way that I will need to clean off before leaving the stall?
• Am I paying enough attention to the open mouth of the ostomy bag while I'm reaching for the toilet paper so that it doesn't have a drip somewhere undesirable?
• When I'm trying to rip off toilet paper to clean the lip of the ostomy bag off before putting it away, will it actually tear as I try to manage it one-handed or will it just roll in such a way that I have to angle my shoulder to help it tear?
• How am I keeping my balance in a squatting position while trying to manage the ostomy bag in one hand and gathering toilet paper in the other?
• Is the person in the stall next to me weirded out that they can see I'm not using the stall in a "traditional" way?
• What if they say something?
• Did I get anything on my hands that I need to worry about as I tuck the ostomy back under my clothes?
• Will I still be able to squat in front of the toilet when I get older?  Will my knees be able to take it?
• Is the flush not going to take everything with it AGAIN today?
• Plus all of the normal work stuff

Yes, it is ONLY one more thing, but the invisible burden of concerns that I carry is already significant.  One more thing in the wave of those concerns feels impossible.  For some people, the bathroom is a sanctuary; for me, it's often a punishment.  Forget bringing my phone with me.

It is NOT my fault.  Leaving "dust" behind in the bathroom is just another quirky facet of my life.  In short, the whole basis of this posted message is under the assumption that we all are facing the same circumstances and accountable to the same rules.  Strike fuck you.

So I did something that I cannot decide if it's petty, a strong display of self-advocacy, or a mixture of both.  I put a post-it reply.  

If you cannot read it, my addition reads "Some of us have a permanent colostomy and have to make due with bathrooms that are not designed for our needs.  Please drop the passive aggressive BS."  The sign was posted on more than one stall--sometimes I do have to use others, if my favorite is taken--but I only put the post-its in my main stall.  

When I went to the bathroom the next day, the post-its were gone, but the self-important sign was still there.  I tore it down, even more pissed.  Later that day, I checked the stall next to it--someone else had torn down that one.  Two weeks later, no sign has reappeared.  

I'm certain there will still be a number of folks that would say "I still don't see what the big deal is."  If that's the case for you, it doesn't have to make sense--it's a big deal for me.  Maybe my response was a little petty, but it's also a place where I advocated for myself, where I wanted to remind people that we don't all have the same circumstances and cannot be measured by the same ruler.  The ruler of "common courtesy" is not only specific to people's own preferences but assumes a certain consistency in others that simply may not be there.  I don't poop out of my butt anymore; I'm acutely aware of this without someone making assumptions in the bathroom.  I'm held to something I cannot achieve as easily as the assumption seems to think.  Even if it still doesn't seem like something to get upset about, this was a place to advocate for myself, to speak up when I was feeling hurt.  It's tough--I'm working on dealing with feelings in the moment rather than swallowing them.  

On Student Loan Forgiveness

There are a few democratic presidential candidates these days talking about a number of important policies.  One that is gaining spurts of attention is the whole idea of student loan forgiveness.  Immediately, that will provoke a visceral reaction out of most any reader, whether it's an immediate, "Yes, that would absolutely change my life!" or "eNTitLeD MilLenNIAiS jUSt WanT fREe sTUff."  You can find a large volume of articles about how Millennials are killing x industry or y industry, as though paper napkins and Applebee's were sacred traditions that were in desperate need of protection. Ignoring the whole tenant of capitalism that industries that are no longer viable deserve to fail (there's no demand, so supply doesn't have value anymore) and that shaming people for not wanting what the prior generation wanted rather than doing fresh research is just lazy/bad marketing, I tell you truly that there are more articles steadily coming out explaining that the Millennials aren't actively destroying anything:  we're just poor.

Then the next common slew of reactions spills in, implying that the spending habits of Millennials is the source of their problem, that they have brought this on themselves by not spending their money wisely.  This is the same kind of logic that people use for any person caught in the cycle of poverty, that clearly they must have done it to themselves, rather than addressing the cyclical and systemic pieces that enforce this in our society.  Here's the short of it:  assuming that someone had the exact same circumstances that you did and just failed to capitalize on them is a real dick move.

Millennials have an absurd volume of student debt, collectively.  We were told in high school that we had to go to college to get a good job, told that we didn't want to "just flip burgers" for the rest of our lives, which simultaneously devalues this industry in society that we actively rely on and also drove a lot of students to seek higher education, as this steadily became a standard requirement in areas it had not been previously.  This doesn't seem so bad until one factors in that these persons are not gaining work experience during that time (another important job requirement) and tuition rates have SKYROCKETED.  I have been told several times how my parents and their family members worked in the summers to pay for college - all of it.  This is not humanly possible in the United States today, unless you have one hell of a family connection or have a very generous scholarship and/or military service.  For the latter, literally risking your life could be a prerequisite for paying for college.  Add to that significantly higher housing prices, the absurdly high price of healthcare in this country, and that minimum wage has not moved to adjust with either of those, yeah, there's not much left to put toward buying a house, let alone save the poor, suffering diamond industry (~sarcasm flag).

That's the in-a-nutshell version of things, that Millennials simply do not have the same circumstances that prior generations had and trying to judge them off of the metric of what another generation was able to do with vastly different resources is patently unfair and leads to a lot of inaccurate conclusions.  We make different choices because we have different factors that we're weighing in to the situation.  It's not our responsibility to show you the math of every situation, but it feels like there are a lot of assumptions made against us.  As an analogy, when I blew my colostomy bag on an airplane and was rushing past people to get off of the plane first so I could contain the mess, I got looks from other passengers who probably thought I was very rude and should just wait my turn.  Had I explained this to people that I had a unique emergency that required this action, the optics probably change immediately and some might even offer to help me outside of staying out of the way.  No one could actively see the situation--it was still hidden under my shirt at that time--but what assumptions were made were probably not charitable ones.  As a generation, we're facing our own emergency.  While it looks like we're being rude or doing something incorrectly, there are reasons for that course of action.  We have our own unique challenges that we are facing.  It feels that though we've tried to explain the emergency that people aren't feeling any sympathy, like if someone had deliberately stood in front of me to let everyone else pass first, even after explaining the urgency I had in safely containing the contents of my colostomy bag from making a larger problem.

It is possible and genuinely appreciated if you ask how you can help or what circumstances we're actually facing.  Not the sarcastic "why did you do it THAT way?" seeking clarification, that is working toward the implied shame rather than actually seeking an answer.  More on the "I want to understand," kind of compassion, that indicates that there are factors that led to this decision and some base empathy even if the specifics of it are unknown.  I'm not saying that there isn't some kind of unnecessary spending happening in certain cases, but there is probably more to it than the individual feels they are entitled to one thing or another.

But, even with that wall of text, I'm not here to convince you of that today--there are many others who have made the case economically, socially, and otherwise better than I have.

So about this loan forgiveness thing.  If I had the $705 I spend monthly on student loans extra to spend per month (not even including the extra that we try to throw at it whenever there is room in the budget to do so), we would have bought a house much sooner, for starters.  We would be saving more, and you can bet we would be stimulating that local economy in some different ways, too.  But the greater, intangible piece is the sheer relief it would give us to have that debt cleared away; I can't even fathom that relief.  Now I know other households where their bill is more toward $200-$300 per month, they might only be paying about fifteen bucks toward their principal each month which is four shades of disheartening.  In fact, they might have given up the idea of ever paying it off, trying to put out a forest fire one mouthful of water at a time.  The kind of relief that would be for them, even having that extra $200 a month would make a huge difference in their quality of life.  In other cases, the student loan payment is about as much as rent, the person in question realizes that they cannot afford both rent and these payments and thus moves home to try to save money somewhere.  Hell, even those without egregious student debt might move back home because of a lack of living wage jobs and inflated housing costs.  I know so many Millennials that have said something to the effect of "I should go to the dentist, but I really can't afford it," or "yeah, I get headaches because I need new glasses but I can't afford it."  Our collective physical and mental health is suffering from the weight of this debt.  This ultimately takes a drain on our country, too, when none of these persons can volunteer, start a business, or participate in public office because they have to find another job to work to make ends meet.  It's a mortgage worth of debt without a house to show for it.  It is very difficult to frame how soul-crushing that is.

Now, Andy and I are fortunate to have both found jobs that pay more than a living wage and to have had a lot of help along the way.  Pairing these pieces with some good financial decisions, we were able to buy our first house.  #MillennialAchievementUnlocked.  We started with approximately 65K of student debt.  We are now under 15K.  We are not a typical case.  We are hammering hard at that remaining debt, and we're hoping to have it done before the end of 2020, earlier if we can push hard enough.  It feels almost possible now.  We are an exception and not the rule.

A couple of weeks ago, I was asked an important question regarding this success we've managed to have.  This individual was aware of our frustrations, that my generation has these additional concerns regarding student debt and the question she asked was something along the lines of this:  "If you pay off all of your debt, will you feel it's fair that someone else gets theirs wiped out, after you've put in all of that hard work?"  Would I think it's fair that they got the help when I had to suffer through it?  I put in all this hard work to pay it off--why should someone else get a free ride after we had trudged uphill to pay it off?

I replied:  "I definitely had that knee-jerk response, too, but then I thought about it a different way.  Thousands of people have died from pertussis.  Just because a cure is available for it now doesn't mean I don't want people who are sick with it to suffer because other people died from it."  I probably could have picked a snappier disease or a cleaner wording, but the idea carries.  If I could cure someone else's Crohn's Disease, I would absolutely want them to have it, even if mine was too advanced for the cure to be effective.  Just because we had managed to pay our student debt off (again, we are NOT the typical case) does not mean I want someone else to suffer the same disease if they don't have to.  Yes, I will have been very sad not have gotten that boon, but I can guess how much it would have meant to me to have it--I could not deny that relief to someone suffering from that same position.  I cannot advocate for someone's continued suffering.  Just because I may have suffered the symptoms is not a good enough reason to allow suffering to continue if we have a way to alleviate it.  In addition to giving the cure to people sick with the disease, I would also advocate the vaccine to keep people from getting it in the future. 

So, yes, we've paid off a huge portion of our collective student debt--barring unforeseen disasters, we're on track to eradicate it in the next year.  While it would be nice to have that money back and/or put into our shiny, new mortgage, I want others to have what I couldn't, to have the peace of mind I crave, to be able to participate in this world more fully.  Anyone that was lucky enough to receive a full scholarship, I hope you would wish the same.  For anyone that was able to get a degree through their time served in the armed services, why would you want someone to have to risk their life to receive the same?  And what about the persons who cannot/could not serve because of their health?  Making college accessible to EVERYONE is the only fair option.

For the time being, though, my real push in all of this is to encourage the idea that generations and persons make decisions for reasons that you may not be privy to and to assume that someone had all of the resources that you might have had and somehow squandered that to end up in their situation is a vast disservice.  I want to push a pause for empathy, to allow for those other circumstances and situations to be part of those moments.

I've heard somewhere that our knee-jerk response is what we've been conditioned to think, but our second thoughts are more about who we are.  I want to grow those second thoughts, the part that allows people to be human and their circumstances to be broader, until that kind of empathy is my knee-jerk response.

So, yes, there are a lot of thoughts about student loan forgiveness and a lot of analyses regarding those.  There are selfish and good reasons to be in favor of student loan forgiveness and affordable college for all, but I want to push that the human quotient of that data is vast and impactful and kind.

We are not our parents.  We shouldn't try to be.  We live in a different world.  There are different obstacles and challenges that we're facing--I firmly support the removal of this one.

Melvin & Me, Part 24: Melvin goes to the Gym!

I find that there are a lot of interesting ideas on what a person with an ostomy can and cannot do.  There are a lot of post surgery facets that folks seem to fixate on:  a very specialized diet, activity restrictions, regular checkups, etc.  These are very important while the body is making that transition, particularly the parts like "don't lift over ten pounds of weight for three months" after the surgery because this can put a lot of stress on some of those fresh sutures.  The dietary changes, too, are especially important as your body is adjusting, that the last thing you would want for a fresh ostomy is a blocked-up ostomy.  Hell, no one wants a blocked-up ostomy.  The body is going to be swollen in these different places for quite some time--any kindness we can give ourselves post-surgery is a good thing.  

But these things don't have to be the forever situation.  This is not to say that some accommodations won’t be made, that there won’t be some permanent changes to diet and activity, but in my experience and in the experience of a few others of my acquaintance the severity and the specifics vary. 

For example, the ostomy diet swears off roughage of any sort:  no leafy greens, anything with seeds, fibrous vegetables, etc.  Makes sense, really.  These contain a lot of fiber that can thicken stool up, cause gas, and/or otherwise be difficult for the body to digest.  At this point, though, I totally have salad, not usually twice in a day as a precaution, but my body can handle salad without much issue.  Some sources will recommend ostomates stick with the rules indefinitely; other sources will say stick with it rigorously for the first six months, then slowly test a food a time to see how it sits with you.  For me, Melvin does not like kale.  For some reason, spinach is fine, but kale can be weirdly painful for me to pass.  But if it were an ingredient in a smoothie, I doubt I would much notice it, apart from flavor (which I’m also not a big fan of, truth be told).  However, I still don’t eat much popcorn because of how the seeds can tear their way through my system, sharp bits in the ostomy bag and everything.  Essentially everything that ends up looking pretty much the same way coming out as it goes in (like corn kernels) doesn’t jive well.  Some folks are troubled by strawberry seeds or cannot stomach more than a cup of lettuce at a time; other folks don’t have any problem at all with these.  We don’t know until we carefully stretch those limits.  Sometimes, I choose to accept the consequences, if that means I get some of that delicious caramel corn in the breakroom:  I have met my emotional need and am prepared for the discomfort to come. 

More than one source has recommended keeping a food journal.  Can you remember what you ate for breakfast yesterday, before you felt nauseous and uncomfortable for a bulk of the afternoon?  Maybe, maybe not, but this way you can at least start to spot those patterns.  I have used MyFitnessPal for tracking online and on their app.  At this point, I have a pretty good idea at this point how my body reacts to different things.  Not everything, certainly, but I have an idea of what things I can eat that do and do not bother my ostomy.  I’m very grateful that my list of what I can eat is pretty broad at this point. What additional restrictions I place on myself, therefore, are an active decision to follow a diet plan of my choice.

However, in addition to the overall problem of blockage and/or painful bowel movements, I also have to keep tabs on how thick or thin my stool is.  Too thick and I could have issues with everything moving through; too thin and I could be losing too much water.  Your large intestine does do the bulk of your water absorption, and I am missing two of the five feet of organ that most people have.  Some foods help thicken things up:  marshmallows and applesauce have been my go-tos, sugar free jello now.  Some foods help thin things out:  juice of some kind tends to be a winner for me.  For my body, a keto diet tends to lend itself toward having looser stool, which I don’t mind because I drink a lot of water to replenish it AND it makes cleaning out the bag a lot easier, letting the liquid roll out instead of squeezing the most disgusting piping bag into the toilet. 

But what about activity?  Can one still go to the gym or build muscle or whathaveyou with an ostomy?  Of course!  Are there some modifications to keep in mind?  Also yes.  But this, too, is going to be specific to the individual, what their emotional and physical limitations happen to be.  There are some aspects to bear in mind:  it’s not particularly comfortable to lie on a plastic ring surrounding that sensitive part of you, a few layers of plastic and cloth between your intestines and the world.  More urgently, though, there’s a hole punched into your abdominal wall—that is bound to affect you core strength, in both general weakness as well requiring some other potential modifications in how one holds equipment or what exercises are used.  

For myself, I have done free weights, machine weight lifting, Zumba, yoga, and lap swimming, all with an ostomy.  I can absolutely do these things.  But I do have to be particularly conscientious of what my body is telling me.  It’s a tough balance, really, between being aware and being hypervigilant.  I need to listen but not obsess,  where I might spend so much energy listening that I don’t end up doing much anything out of fear.  So, in lifting weights, for example, I will go about this activity as one might normally.  The only difference is I am internally watching my abdominal muscles for any sign of discomfort.  Pain is an important indicator, for sure, however in the context of working out, some strain is expected.  Shaking muscles, that’s good, but outright pain is a strong indicator that I need to stop whatever it is I am doing and at the very least lighten the load, likely consider how my body is positioned if I need to adjust that, too, if I don’t stop the activity entirely.  With Zumba, there is a lot of different movement involved, and mostly there is not an issue any of the movement, excepting any activity that involves doubling in half very quickly which I do not do with the same enthusiasm as other movements.  Yoga has a couple of different modifications that I need to keep in mind with any action that takes place lying on my stomach.  The bow pose is one in particular that I am decidedly uncomfortable with, where one lies on their stomach and grabs their ankles behind them or otherwise lifting the legs and arms forward in more of a “Superman” style of things.  This puts a lot of pressure directly on Melvin.  What I end up doing for these moves is either choosing to stay in child’s pose or resting gently on my stomach.  I don’t mind being the only person not doing the pose in these cases.

Lap swimming might seem the odd one out of the group.  Yes, I can go swimming with my ostomy.  Yes, I do have a plastic bag full of poop and air strapped to my side as I do so, but otherwise there is no different than it was before.  This activity was safe before and is safe, still, just with that background concern.  Well, that and one more thing:  it’s really odd to have something inside the bag when I’m swimming.  I tend to empty the bag right before swimming to avoid the sensation.  When I’m swimming freestyle, any liquid in the bag will slosh left to right as my body twists along with the stroke, just a bit delayed from my body’s momentum.  This is even worse when there is air in the bag.  Try taping a partially filled balloon to your side and swim a lap—it gently sloshes back and forth with the body, unconcerned with what the rest of your body is doing.  It feels rather weird.  It’s not painful, just weird. 

The thing is, I’m actually able to do more now with the ostomy than I was able to without it, because my health has been so much better with it.  My colostomy has allowed me to do more than it has limited me.  Isn’t that something?  

My colostomy empowers me to do more than I could before I had it, not less.

Melvin & Me, Part 23: Crohn's 103, Treatments and Interventions

There is a strange ritual that I find with fellow Crohnies, that I have not witnessed in other contexts.  This isn't to say that it doesn't happen in other places, but I find it's often the second or third question that we ask each other upon finding that commonality is some variant of "what medications are you taking?"

It is weird.  I can't think of many other contexts where a disease or condition is revealed and that is part of the conversation almost immediately, outside of a medical environment, of course.  But we do that.  Even with other folks with ostomies, what system/brand/products do you use tends to be a fair bit lower down the list of priority in the conversation.  There's a curiosity quotient out there for others suffering silently with the same disease.  Everyone's Crohn's or ulcerative colitis is unique to them, with what foods and situations their body is sensitive to, but that is a place where we tend to come together nicely, where it's easy to compare notes and get a few small ideas as to other options that might be out there for ourselves.

Here's a big thing to understand about Crohn's:  there is no cure.  But there are ways to become asymptomatic.  This is something that I have alluded to before, though it is worth stating plainly.  Crohn's is a chronic disease.  It is never cured.  Symptoms are at their worst when we are in flare-up state, where, per the name, inflammation is high, thus driving a lot of symptoms in the body.  However, a flare-up can be calmed, putting the body back into remission where there are comparatively few symptoms.  How difficult it is to bring a flare-up to heel depends on the flare-up--how deep does it go?  How long has it been going?  What areas is it affecting?  In any case, one does not go from hardcore flare-up to remission in a week.  It is possible to curb a flare-up before it gets too terrible.  That question of when another flare-up will happen is always over my head.  Always.

What causes a flare-up?

Great question. Glad you asked.  In order to find treatment, it's good to have an idea of what can cause the problem in trying to better it.  There are a number of different things that can contribute, but no magic switch that I can strategically avoid.  Too much stress could do it.  Alcohol could do it.  Certain foods could trigger it.  NSAIDs (non-steroidal anti-inflammatory drugs) can cause a number of issues--ibuprofen is anti-inflammatory everywhere EXCEPT your gut, where it can cause a significant range of digestive issues. Smoking can definitely cause it (lots of documentation on that one).  But what foods and how much alcohol and how much stress?  It is different by person, but there are some common threads that are bordering on consensus territory.

That stress point.  It's a terrible cycle to have your inner critic demanding that you stop stressing because it might make everything else worse by having your body collapse in the middle of whatever the original stressor was.  Initially, I totally went the bottling, denial route, putting aside a great number of things that need processing.  I remember very clearly my father telling me one night in the bathroom to get angry, that he didn't want me to be happy if I wasn't, but to then channel that anger into getting better or, in other words, packaging it so I could let it go.  That's been a process, to have enough self-compassion to allow myself to feel what I need to feel in the moment, rather than insist that I shouldn't feel something in the misguided idea of preventing my body from disease.  It's a protective impulse; it is also fully counterproductive.  I'm not great at asking for external compassion, but at least I have better tools to give some of it to myself.

So what are some different treatments for Crohn's?

There's a great deal that are about managing symptoms.  For example, if you've had diarrhea, some Imodium and possibly some wet bathroom wipes, Epsom salt baths, or Desitin/Calmoseptine on that raw anus can help quite a bit.  Whatever helps you when you feel nauseous, when you have a stomachache, if you have sores in your mouth, etc. falls into this camp.  Getting more rest and reigning in your stress are only going to help.  But that is symptom management.

There are a few major classes of treatment, including steroids, biologics, immunosuppressants, and surgery.

We tend to think of steroids colloquially in terms of building muscle.  The idea is similar, that the steroids are giving your body some extra ammunition in rebuilding areas that are under attack from your immune system, giving you more pieces to wait out the barrage long enough.  The big dog in this camp tends to be Prednisone.  It's used in other contexts, maybe alongside your antibiotic if your bronchitis isn't responding enough to just the antibiotic alone.  There are a TON of different side effects to Prednisone, including but not limited to the following:  voracious appetite, heat flashes, night sweats, puffy "moon face" with other body swelling, brittle veins/bruising, and irritability.  When I'm on a large dose for any duration of time, I find myself agitated and ready to lash out at anyone, where in addition to feeling out of control of my body I now also feel out of control of my mind.  Long term doses can make your bones more brittle, too, which is why after being on a dose (primarily a rather low one) for about two and a half years, I asked for a bone density scan just to be cautious.  Coming off of them can be interesting to, since going cold turkey from a high dose can literally kill you.  More than once I have struggled through weaning off of the medication after being on an extended dose with a flavor of withdrawal that was, while not life threatening, a frustrating experience to say the least.  The flip side is that steroids work almost immediately and they work well.  By the next day, I tend to feel a difference.  They work, but I know I'm sick if I'm asking to be put back on it.

Immunosuppressants probably make the most obvious sense out of the medicinal side of things.  If your immune system is overzealous, take away some of its firepower.  However, finding the right balance is imperative.  Too far, and a cold is never just a cold.  Too little and you're in the same place you started.  At Mayos once, I recall asking what all of my options were in reining in a rather persistent flare-up, and the final option, when all else had failed, was a series of medications for those who have received organ transplants, to keep the body from rejecting the "not-me" tissue.  When on any kind of balance of immunosuppressants, there are a few other rules and conditions, such as not taking any live variants of vaccinations (e.g. the nasal swab version of the flu shot is usually a weakened live strain vs the actual shot which is suggested for me).  For any vaccination that does not have a non-live variant, we depend on the people that can take it to protect us with herd immunity.  Get your damn flu shots, folks, if not for yourself but for people that cannot.

Biologics are a class of medications that have some kind of organic origin.  A common example of this is insulin.  We used to take it from pigs or cows, until we engineered bacteria to produce it and thereby harvest it for persons that need it.  For other products in this category, the proteins, sugars, whathaveyou were derived from somewhere, then often reconstituted into a serum.   I have had a slew of these for Crohn's, since I was eighteen, to be precise.  These have included Remicade (infliximab), Cimzia (centrolizumab), Humira (adalimumab), and my current friend, Entyvio (vedolizumab).  Both Remicade and Entyvio are IV infusions, performed either at the hospital or at my doctor's office.  Cimzia comes in autoinjector pens (think Epi-Pen) and shots--I gave myself shots for the duration of my usage of this one.  Humira I had the autoinjector pens once a week, and it stung every time.  I'm not sad to get an IV for my Entyvio now, since I find it easier to let someone else do the sticking and I don't have to keep a supply in a drawer of my refrigerator, figuring out how to take it on family trips and such.

And then there's surgery.  This may never be necessary for some folks with Crohn's.  I had mine for ten years before surgery was ever floated, actually.  It depends on where your disease rests, which areas become too scarred or angry to function any longer, or if it ever gets quite to that point.  I happened to be in some severe, long-term flare-ups; there were parts of my colon that were not absorbing water or nutrients to the capacity that they should be, also painfully restricting the movement of fecal matter through the track.  To put it bluntly, I was not passing anything wider than a dime, because of how narrowed these areas were. from layers of scar tissue  It looked like goose poop.  And it hurt like hell.  Scarred colon simply doesn't stretch like healthy colon does.  And with surgery, of course there are other complications and side effects that come with the territory. 

And remember, there is no cure at this time (though I know bone marrow transplants are being tested) for Crohn's--the goal is to get the body out of a flare-up and otherwise keep up with maintenance to ensure it doesn't veer into one.  I refer to my infusions sometimes as going in for maintenance and confess I do enjoy the occasional look of confusion.  

Larissa P, Still Very Amatuer Plumber

I did tackle that faucet.  This was a fun and interesting step forward, definitely a riskier element than a toilet flusher thingy.  I found one video that included everything from taking out the drain, removing the old faucet, and setting in the new with a few other weird "well there are some situations that you might need X or Y" which did turn out to explain, for example, why there was an extension on the drain and why I still needed that to make my P-trap function correctly.  Yeah, if you don't know what a P-trap is, I didn't either until a week or two ago, but it's the bendy bit of the tubes under the sink, the one that dips down and back up.  Evidently, this helps keep sewer gas from coming up the drain pipe.  The more I delve into it, the more amazed I am with how simple and elegant plumbing can be--gravity does a lot of the work, basic physics shape a lot of the design of these different elements.  In other words, it's not fancy, necessarily, but it is clever and elegant.

So, the faucet.  Step one was to turn the water off.

Hooray!  That was easy enough!

Then, we had to take off supply lines and remove that old faucet.  I elected to replace the supply lines as well, since they appeared to be a little corroded on the inside, or at least had some kind of white gunk that did not look like fresh metal hoses.  I mean, if I could scrape something off or shake something out, it definitely wasn't new at the very least.  It seemed like the other parts were just peachy, though.  Since I was replacing the drain, I also had to take off the P-trap, which led to a cup or two of water coming out, thankfully into a container I had nearby explicitly for that purpose.  Okay.  So far so good, with everything being within the realm of the instructions.

It was a little difficult to get the supply lines off of the faucet itself underneath the sink, but not too bad so far. It was tricky to bet back there more than anything else, but I could at least manage to work those pieces enough to get those pieces loose.  But the nuts holding the faucet to the sink, that was a different story.  Any video so far that I had found recommended a basin wrench or a basin buddy attachment for a socket wrench.  After about an hour struggling to get the pieces loosened in the confined space without this tool, I finally conceded that maybe this was stronger than a suggestion.  There was no way that I was going to make my monkey wrench or channel locks (the kind of wrench with a "jaw" that moves up and down to make it wider but isn't a monkey wrench) both grab what they needed to AND make an effective turn.

I started working on the drain instead for the meanwhile, since at least that was at an angle I could manage to get to loosen.  That was gross when it came out, gunky and gross.

Ew.

I borrowed a basin wrench from a friend (thanks, Dale!) and picked up some WD 40 and a couple new supply lines.  Not sure what a basin wrench is?  It's a long stick with a head at the end that has a head that can either go left to right or flip it over and it goes right to left, depending on what angle and what purpose you're intending.  The top of the wrench, in addition to flipping 180 degrees, also has a flexible piece, as though the top of your average wrench could be stretched out on a spring, meaning that it could fit around most anything, get a good grip, and by turning the long pole that was mounted on, you didn't have to have your hands right up against it in the tiny space, staying about a foot underneath it with this beautiful thing called leverage.  Boy, that made all of the difference. Need a visual?  It's in the picture from the last plumbing adventure. 

Complete with reminder note that the sink wasn't working,
in case it wasn't obvious

The old faucet and drain were gone!  But it had been a lot of work getting those pieces off, particularly with stopping in the middle to get the right tools.  The areas were scoured and ready for the next step.  But I wasn't.  It was enough for one day.

Consensus was out whether that was the hard or the easy part.  I put off the project for a day or three, wanting to ensure that I had enough time to finish the rest in one go, just in case.  I also wanted to have Andy watch the new faucet while I was tightening that piece, to ensure that it was centered and he ended up tightening the last of it for me while I held it, which meant I had to work around his schedule.

When I brought Andy in, he ended up under the sink instead of me, since he could give it that one more tighter twist.  Shortly after, I attached the supply lines and placed the new drain.  That part was blessedly easy, settling it down and screwing it tight.  Under the sink, the end of the drain needed that extension still, too, according to the instructions from the video, where things should settle.  I was glad to have had that work already done for me.  All else seemed to be working well!

Water back on and NO LEAKS!!

...but (particularly with that purple arrow) there was a piece missing.  Yep, premature thumbs up and all the frustration that implies.  That pin-thingy at the back of the sink, that makes the plunger part of the drain go up and down, that was sitting next to the sink.  I had left it out intentionally, because I was SPECIFICALLY following instructions, which had this pin going in as the second to last step, then connecting to the pieces underneath.  But with how close the sink was to the back of the wall, I could not slide it into place.  Ugh.  There was a throwing up of the hands and leaving the room at that one. Better to leave than to flip the table.

About four days later, we loosened the faucet just enough to put the pin through.  The faucet complete, the "No" post-it note change to a "Yes!" post-it next to the sink.  Success!  Faucet changed and looking dapper in its new spot.  Huzzah!

Time to move on to a new room and a new project, with some interesting new skills and understanding.  It's great to have that kind of ownership of my own home and to see our own little touches start to shine out of our space.