Baggage Limits

I remember my trip to Scotland, junior year at Knox College, 2007.  After all of that adventuring and ending my castle count at 14, it was finally time to go home.  I had spent a few of the last days with some friends in London, wandering about in the best kinds of ways, and eating cup'o'noodles at the hostel (free hot water + 69p made for a cheap, hot meal--curry flavor with mango chutney was the best).  I had a pound and forty-five pence left, but a lot of pictures and memories.  I walked from my hostel to the Tube station, and headed toward Heathrow.  After some confusion, I found my airline counter.  

There was a woman in front of me that had two ENORMOUS, identical, army-green duffle bags.  I could **comfortably** fit inside one duffle bag.  It was fat enough that they had trouble stuffing it in the gap to pass luggage to the airline staff at the check-in, sticking out comically on both sides once they managed to do so.  The airline staff was patiently trying to explain that the bag was simply too big to fly, let alone both of the bags.  So, I had plenty of time to take my hardback suitcase and significantly smaller duffle bag to the self-weigh station, determined that I would not be quite so difficult for the staff today.  

I had put all of the heavy textbooks and heavy anything, actually, in the suitcase.  Since it had wheels and the duffle bag was going on my shoulder, I thought this would make the carrying of these much easier and otherwise the bag on my shoulder simply "felt" heavy since I was directly carrying it.  The hardback suitcase--solid clamshell of green plastic--was too heavy.  The don't-shoot-me-orange duffle bag had plenty of weight to spare.  So I sat down on the floor near the scale with my open suitcase, moving sweaters from one and textbooks into the other.  After fifteen minutes and three more re-weighings, both items were within acceptable parameters.  The duffle bag person was still there, but I was waved over to the next station, checked both bags without incident, and was on my way toward security in about six minutes with only my backpack.  

Andy and I had a nice heart to heart talk the other day.  When we've been going through some of our individual trauma--involving my health, past relationships, and whatever else--we found that both of us were trying to shield the other from additional burdens by not sharing them.  This has been a reoccurring problem for us, truth be told.  We realized early in our marriage that shielding the other from our burdens to spare the other person the weight of them wasn't going to work.  We needed to talk about things that were important to us, even if they weren't wholly pleasant.  And we're definitely still working on this, particularly when we're in high stress situations.  Andy had been trained to not express negative emotions or certainly to never be confrontational--I assure him that I want to know what he's thinking.  I am working toward allowing myself to stay on those "negative" emotions when I need to, to process the anger I have surrounding my situation instead of stuffing it away.  


Everyone has parts that they carry.  Everyone's baggage is different, complex, and wholly their own, not to be measured in the same way as anyone else's.  Here's one thing I've certainly come to understand:  burdens don't just disappear after one piece of advice.  Or to follow the analogy, as we go about out travel through life, we're already at the airport with all of that baggage, ready to travel onward to the next adventure.  It's heavy.  It's awkward.  We're really prefer not to have to carry any of the luggage any further.  And even if it's gone temporarily, it waits for us at the next stop.  But sometimes, it's not about getting rid of it.  We can redistribute our baggage to make it easier to carry.  

We have a friend recently that didn't want to unload something important to them because they didn't want to add to our burdens.  Unloading your baggage doesn't mean that someone else taking on those burdens--I don't offer to worry for someone whenever I take the time to listen to something that concerns them.  But I will happily help them play suitcase-tetris to make their load easier to bear.  Yes, sometimes this is messy, sprawling out on the airport floor and more than a few swear words of frustration.  This could involve throwing some things out in the airport garbage, stuffing socks and underwear in shoes to maximize space, or asking for a bag at the coffee shop so that the carry-on accessories can be more easily juggled.  I don't take the baggage away, I don't direct how they should carry their items, but I will assist, even in simple words of encouragement or with another hand to help pull that luggage around, if we cannot rework the entire suitcase order.  

It's not always about getting rid of your baggage.  Sometimes, it's about redistributing it to make it easier to carry.  

Update on the Last Post

Hey, all!  

Quick update on the last post, here.  The performance was recorded and I have imbedded it here.  Check it out, if you'd like.

Thank you, choir, for being awesome and thank you everyone else for your support and comments as well.

The Song I've been Cursed not to Sing

Music has a way of reaching us in ways that transend conversation, words and tones that touch you in ways that don't even make sense in the moment, if ever.  And with that pretentious beginning, I want to talk about one of those places, where a song takes on a new body of its own, that has its own complexity and presence.  

There is a song that I've been cursed not to sing.  What I mean by that is that it seems each time I was supposed a part of performing this song that something, specifically my health concerns, has interfered. 

The first time, apart from casual listening on the radio, that I heard "I Will Rise" was as part of a choir tour.  I was friends with the daughter of the choir director at Wesley UMC and a couple other good folk there.  They needed young adult chaperones to go along and sing to help bolster the sound where it was needed (there was one song I was tenor, another where I was alto one, and so on).  There were some very holy moments in that practice, where the group sang that proclamation with hearts in our throats.  The trip was going to take us into Canada, a week or so of adventuring and bonding.  

As we were preparing though, my health was staring to deteriorate.  I ignored it for as long as I could, languishing through my classes and collapsing back in the church basement at First UMC immediately afterwards.  Eventually, I had fevers consistently enough that I knew it wasn't safe for me to be driving, and it couldn't be ignored anymore:  I broached my health concerns with those in charge of the trip.  We started talking about what accommodations we might need, but I knew pretty quickly that the right decision was to back out.  I ended up being hospitalized during the week of or shortly after they left, I don't remember exactly.  I think I still have the postcards that they sent me.  

After than, whenever I heard this song--this song that makes strong declarations of overcoming and triumph and strength--now only reminded me of the fragility of my body and how I have missed out on many things as a result.  

There was another instance where I was supposed to be part of a group singing this song, but I confess I don't remember the details.  Most recently, though, it was a featured song at choir school this year.  The choir school that I had to back out of because I didn't have enough time off to go to my appointments at Mayos AND go to choir school (SOMEDAY I will use time off primarily for time off and not for appointments and procedures).  So this song, lovely as it is, pings against my psyche in some unpleasant ways.

And now to a few weeks ago.  Our music intern at church had chosen this song and asked in rehearsal if I could sing a solo.  I'm sure he had no idea what he was asking in that moment.  I had thought about declining--I know that I could have without any sore feelings--but I've got enough stubborn that it wasn't the option I was going to start with, in any case.  The first practice I sang it as part of the rehearsal, the words choked in my throat, from a mixture of nerves and other emotion that I was afraid to analyze in the moment.  

But in order to get through it, I had to dissect that feeling at some point.  The song to me has always been about triumph, but reminds me chiefly of defeat.  When I tried to sing it triumphantly, something that I was decidedly not feeling, it just didn't work.  My normal treatment toward a solo is to sing it until I'm sick of it, but this seemed to be making things worse, tears forming as soon as I thought of trying to sing through it again.  Even the nature of the solo and how Tyler described how he wanted it, a quiet moment when all else fades away, the tears came more and more readily.  

Eventually, as I sat trying to sort through it all for the umpteenth time, I asked myself "what if I sang it more like a promise and less like a proclamation?"  This made me feel a lot better.  The tears are more cathartic now, instead of just anger and hurt.  

This song forces me to grieve.  On the one hand that's good.  I know that I don't take these moments as often as I need to.  I'm working on that, not shunting away elements that I need to address, so that I don't end up crying in front of the white bread at the supermarket.  

This song has held so many meanings to me--how many of them were going to come out this time?  I shared this with the choir, through those same tears, the rehearsal before performance, finding one of those beautiful moments were we could all be vulnerable to each other and, paradoxically, find strength.  And when one person is vulnerable, it makes it a safe space for others to be so, too, if they choose.  I felt much better after that, the anxiety eking away, and finding some peace that whatever happened would happen, and that was okay, even good.  There were a lot of significant looks between the choir members, sharing strength and solidarity.  It meant all the more for it.  We made music that day.  

And where that leaves me now, well, I'm still sorting through that.  I feel as though I've reclaimed a part of something.  What that something is or even how much of it there is, that's harder to nail down.  I do feel a little more triumphant when I hear the song now, or at least not wholly sad.  I think of Tyler.  I think of Mamma P.  I think of Andy standing next to me.  I think of the group hug from rehearsal.  There is an underlying sadness, still, but colored with brighter edges, shifting the grief to a little more hope.  

My therapist asked me the other day what I would want in the world, what would bring me peace.  More of these moments, certainly, where grief is present but shifting toward healing.  There are a lot of other components that need this frame shift, that need to be reclaimed.  I won't say that this one is fully rewritten, but baby steps and breaking a curse seem like progress to me.  

Empathy Hack: "I Know you in that Moment"

I can't even say when I started saying this particular phrase, but it's become an important one.  It's not something that is required in every conversation, but more for those deep or vulnerable moments when another person chooses to open up.  When someone is telling me about a rough spot in their life or are actively grieving  or whathaveyou, if I feel that I very much understand some of what they are feeling, I will say to them, "I know you in that moment."  What I mean by this is that I don't presume to understand the full scope of everything that they are feeling right then, but I understand viscerally at least part of that feeling because of similar experiences.  In that one moment of time, they are understood and heard. 

Now that's just the first part of the phrase.  The second part is NOT explaining in great detail why I understand.  That's the hard part.  Too often we fall into a place where we try to identify with someone by explaining something else we went through, whether the intent is to identify or to showcase how what they're going through can be overcome.  Sure, the intent is showing them how we understand so it feels like it's about that other person, but it ultimately is taking the attention away from the speaker and putting the attention back on ourselves, where we're comfortable.  The second part of the phrase is working to actively resist that urge.  And yet, we still want to express empathy for that person.  The complete phrase works as a halfway, where I can identify with the person's situation and then try to quickly return the focus back to the speaker.  This addressed the unspoken politics within a conversation, defining the fuzzy line between being part of the conversation and dominating the conversation.  

Example A:  
Friend:  "Ugh, I have been arguing with my insurance company for the past two weeks and they STILL won't budge."
Me:  "I know you in that moment.  That sucks.  What did they tell you last?"
Friend:  **proceeds to continue venting about their situation**

Hypothetical friend here who started the conversation with something that was important for them to talk about is encouraged to say what they would like to say.  They have a moment of compassion and empathy from a listening ear, but then an open floor to voice what is concerning them.  There might be a few spots of advice there or the conversation might shift back to me, if there's an invitation from that hypothetical friend which I may or may not take, depending on the situation.

Compare that to this next one.  

  Example B:  

Friend:  "Ugh,my doctor and my insurance company are at it again."

Me:  I know what you mean.  I've been trying to get my doctors and my insurance to agree to send me my ostomy supplies.  I think it finally went through, though, because it hit my credit card at least.  

Hypothetical friend here, now, has no way to really get back into voicing their frustration.  I have made it about me, addressed my need, and then left no opening.  Instead of venting or experiencing a moment of vulnerability with something important to them, now they have to sit and listen to how well the other person understands.  

And another example:

Friend:  "My friend is trying to get out of an emotionally abusive relationship.  I don't know how to help them."
Me:  "I know you in that moment."

And a different example:

Friend:  "Work has been so rough lately!  My boss just asked me to get two weeks of worth wrapped up in two days with only half of the information."
Me:  "Ugh.  That sounds terrible.  What do you have to do?"
Friend:  "That's part of the problem.  No one can give me a straight answer."
Me:  "I know you in that moment.  Is there anyone else you can ask?"
Friend:  **proceeds to talk through their current work drama**

And one more:

Friend:  I didn't really know this person that well.  I'm not sure how to feel about their death or what to say to their family.
Me:  I know you in that moment.  I find that the best thing to do is just be present.  Have you thought about sending a card?

Admittedly, sometimes I forget the second part of the phrase.  I know logically that a person confiding in me is probably not doing so because they want me to fix it or try to explain why they should be grateful because so-and-so's had it so much worse (as if it were some kind of competition):  I find more often than not, people just want to feel heard.  If that person wants to ask for further specifics about why I understand, I'm open to their asking but I try to wait to be asked.  

Conversations should have a give and take relationship to them, but sometimes important conversations need to be one way for a short while.  I will have my time to vent, too, particularly as I'm learning better ways to ask for it.  I recognize though that I would want the same kind of respect in those moments when I'm opening up about something important, too.  It's a kind of pre-empathy, if you will.  

Anyway, give it a spin.  And if you feel inclined, let me know about your experience with it.  

Melvin and Me, Part 7: A Case of the NowWhats

I've never been a fan of the stereotypical interview question "where do you see yourself in five years?".  In the first place, it always sounded like one hell of a trick question.  Are you supposed to prove your loyalty to a company that might not hire you?  If you avoid talking about work and your life goals, how do you avoid hackneyed platitudes and artificial generic-tudes?  And certainly they don't want me to be too specific--it's like the call and response of "How are you?" in some senses.  I'm cognizant that there is an off chance that a lot of things could run into some kind of hiring bias.  So I slur my way through these kinds of questions, stating a "safe" goal, like traveling, or to write more or, yes, slipping into a cliche of some kind.  

However, the real reason these make me really uncomfortable is because I'm acutely aware of what can change in a very short period of time.

I was reviewing my Christmas Letter entry from 2016, starting into 2017, and thinking that clearly I had no idea what was going to happen.  I get the same feeling watching our wedding video on our anniversary, that neither of us had any idea how soon everything was going to go catastrophically wrong.  I was relatively confident in December of 2016 that everything was on the up and up, but then again if a future me had said that I was going to be stuck with Melvin by the end of it, I probably could have believed it anyway, not because I expect the worst but because I'm aware of how fast things can change.  

I don't think I plan like a "normal" person.  Five years, I can't even fathom trying to plan that out.  There are so many variables, on top of whatever massive, quirky, alien of a surprise plops itself down in the middle of it.  How?  H0w could I make a five year plan?  My health situation has taught me to be flexible--and, Lord, has it taught me to be patient--and yet I feel this is a place where I'm so malleable that I cannot find direction anymore.  I can go with what I need to for survival's sake relatively fluidly, but I cannot figure out for the life of me how to direct that.  Worse still, I'm having a hard time figuring out where I want to.  

Actually, that's not really true.  I can be pretty good at deciding what I want.  I'm not talking about the "what do I want for lunch?" kinds of questions.  For the big ones, I can know pretty well what I want; it's more a matter of talking myself into it.  As it stands now, I do have a couple of things that feel right that I want to work toward, but as to when any of that might happen, well, that's where we get into the five-year conundrum.  These are long term goals, which require steady progresion and proper timing with other components in life, like paying off student debt.  The longer the stretch of time, the more variables are present and correlatively, the more places my health and other life adventures can break that apart.  Trying to predict and plan for all of these unknowns becomes so overwhelming that I shut it off for a little while longer.

When Andy and I were planning for Norway, there were a lot of things that we said we'd talk about after the trip, which included possibly moving amongst other things.   This was oddly comfortable, until, of course, we ultimately were faced with all of those same questions waiting for us on the other side.  The same thing happened again with my surgery, that there have been many things that we needed to wait to discuss until after Melvin was sorted out.  Well, I can only say "I'm still recovering" for so long before I have to pick up the same questions again.  

Where do I see myself in five years?  Now what?

There are safe, long term goals that I can make.  The best example I have of this is planning out our financial goals.  These are clear; these are linear.  I don't have a set time on when I'm doing what, but I know the order and the rough duration of the step I'm on.  I can estimate  roughly how long it would take us to do certain parts of it by that projection.  I can see tangible progress.  Barring unforeseen disasters, we'll pay off Andy's student loans this year, which considering how we started our marriage (fittingly, just over five years ago at this point) is pretty damn awesome.  And yet, the more I dwell on that, the more it makes my point, that I am a different person in a very different place, five years later.  

I recognize that everything is constantly changing, that there are seldom any certainties in this world (**something something "death and taxes" something**).  This is reflected in my speech to some extent, where I don't like to make absolutes, often adding in caveats like "barring unforeseen disasters" that I used a paragraph ago.  It drives Andy crazy from time to time.  I don't mean to avoid the simple yes or no question he asks me or avoiding giving him a definitive answer altogether, but I want to leave room for the unexpected or for elements to change as time goes by.  There's too much grey in the world to talk in black and white.

I feel old, not in a playful way, but deep in my bones, with everything Crohn's Disease has put me through.  I have mellowed out from the weight of it, especially from who I was ten years ago, but maybe some of that is just everyday maturing.  Trying to sort out how everything might fit together in another five years while simultaneously addressing how much has changed in five years, it just seems to typify the problem.  

So now we get the the real crux of it, that whether I know what I want isn't necessarily the question:  I'm afraid.  God, I'm so afraid.  And that confuses me, too.  I don't tend to think of myself as a fearful person.  I will talk to strangers, wear a hat even if I'm not sure it suits me, take a trip out of the country, give a presentation to a room full of people without much real anxiety.  What anxiety I have turns into a lot of careful preparation and planning, but usually on the healthy side of that.   And yet, I have a lot of anxiety, particularly in regards to my health that does hover strongly on the unhealthy side of things.

Why does this feel so different?  Why is planning out the trajectory of my life cause me to freeze instead of attacking it with a list and free stack of post-its?  Are Andy and I going to buy a house, and if so where?  Are Andy and I going to raise a family, and if so when?  Are Andy and I going to emigrate to Norway?  What if I decide to pursue nursing?  What about Andy's goals?  When am I going to sit down and write that blasted book?

There is no right order.  Just leaping.  Careful consideration into each step, research, but ultimately some leaping involved.  But here's the important part:  I don't have to leap now.  I don't have to leap any time soon at all, actually.  I'm already in a state of great change, adjusting to Melvin.  I probably shouldn't be making ANY big decisions right now.  I recognize that this discomfort, the state of the NowWhats, are mostly a reaction to this big life change.  And with these significant changes, this seems to shed a new light onto everything that I have been doing.  

So instead of a knee-jerk, big life change, I'm going to find those parts that I appreciate about where I am now.  There's a lot of soul-searching and elements of my health that I've been neglecting for the sake of survival.  I like my job and the people I work with; I like where we live and the activities I am returning to.  That's enough.  That's enough right now.

An Informal Poll

Hey, all!  

Short update this time.  Using incomplete sentences kind of short.  

I have embedded a poll as part of the blog, to be up for a little while.  It is just under the title bar in the upper left.  I am contemplating changing the name of my blog to "Melvin and Me."  If you are of the opinion to make this change or leave it the same, there is a handy spot to click.  If something else occurs to you, please vote "Other" and include your thoughts as a comment.  

Thank you for contributing!

Melvin and Me, Part 6: Ostomy Basics and some Specific Backstory

I am writing this blog post specifically to have something to point to for anyone who is new to these or otherwise fits the following:  

"Melvin" can also be substituted for "Ostomy"

I still have to remind myself from time to time that not everyone has lived my experiences and may not have heard about this.  And I've found more and more as it goes on that people have opened up to me that they themselves have an ostomy or have a family member that does, however this is still not everyone.  Even those that have followed the recent path of changes, I've got some interesting backstory from over five years ago now that will provide some additional context.  

So what even is this?  An ostomy in and of itself is a surgically created hole for bodily wastes to exit out when something is wrong with the "normal" pathway.  This can be temporary or something permanent, depending on the situation.  I had a temporary ostomy twice, actually, when one surgery failed and parts of my body were allowed to heal for some time before everything was eventually surgically reconnected.  My body needed that time to regroup before we could go back into surgery and trying again.  But I'm getting ahead of myself.  Depending on what part of the body the ostomy has been created from, it gets its own special name.  If the ostomy has been created to allow for the passage of urine from an exit other than the bladder, this is a urostomy.  If the ostomy has been created to allow an alternative exit from the large intestine, it is a colostomy.  And if the large intestine has been bypassed, it is an ileostomy, named for the final section of the small intestine.  

A person might need these for a number of reasons, from cancer to some kind of accidental perforation or other disease.  Mine was an odd mix of things.  I was diagnosed with Crohn's Disease when I was twelve.  After that initial flare up was controlled by steroids, I had another at eighteen and another at twenty-two, the latter is technically still the same episode I'm in today.  A flare up in the case of Crohn's means that a section of my digestive tract was particularly inflamed.  In other words, my immune system was confused and actively attacking that part of my body.  Getting this response back under control and allowing those areas to heal and work "normally" again is called remission, where all seems quiet for an indeterminate amount of time.  Since everyone's disease is a little different, there are a few different strategies and treatments, involving different types of medications, vitamins, diet changes, and surgery.  Some people can hit remission with a round of steroids; some cases require much more extreme steps.  While we were working on finding remission, we ultimately started to discuss surgery.  There was a chunk of my sigmoid colon (the last section of the large intestine before the rectum) that was scar tissue on top of scar tissue until the area was so restricted that we could not even fit the colonoscopy camera through it anymore, particularly as scar tissue does not stretch well.  This section had to go--we weren't able to proceed further with my treatment for Crohn's disease medically, particularly understanding that this area completely sealing off would be disastrous.  

So, I was planning my surgery the same time I was planning my wedding, how weirdly life worked out.  Ten days after Andy I were married, we were up at the Mayo Clinic in Rochester, MN, going into this first surgery.  Less than twelve hours later, it was clear something that was very wrong.  This bowel resection took out a foot and a half of the large intestine and was internally reconnected.  However, we found out later, the tissue that had been stitched together was so diseased that it disintegrated around the stiches.  My colon was leaking into my abdomen, and, understandably, my body was reacting violently.  

So a few hours after the initial surgery, I went back for emergency surgery, to clean out the infection of my abdominal cavity and place an emergency colostomy.  I was twenty-five.  With all of the nooks and crannies inside said abdominal cavity, it is impossible to clear out all of the muck and infection had already settled in.  They also placed some surgical drains--a tube that has an end in an infection pocket with the body and a bulb on the other end of the tubing, creating a small vacuum to suck out pus and other fluids to help keep infection under control.  Additionally, the wound they had created while doing this clean-out couldn't simply be stitched shut:  we had to pack this wound to heal slowly, to prevent infection.  The wound was about as long as my hand and two inches deep, stuffed with sterile gauze and cleared out and restuffed a couple times a day.  I went in and out of ICU for about a month, removing some drains, placing others, piping in enough IV antibiotics that my kidneys started to shut down, and otherwise languishing.  

Flash forward to six months or so later, January of 2013.  We went to the Mayo Clinic again to talk about reversing the colostomy, to see if we had given everything enough time to heal to reconnect the digestive tract safely.  The plan was to go one of two ways, either reconnecting if the organs looked like they could stand it well or take the safer (if more annoying) tack of an ileostomy, allowing the colon to reconnect before running all waste through it again.  

My colostomy had been an end ostomy, meaning that my colon was redirected to a new, pure exit point; there was only one way out for fecal matter to exit.  An end ostomy is made by pulling a small piece of the intestine out and inverting it a bit, folding the end inside out over itself.  This is then sewn to the outside of the skin, to keep it from closing on itself.  My ileostomy, however, was a loop ostomy.  They pulled out a portion of my small intestine and cut into it most of the way through.  This meant that the majority of the stool passed into the bag, but some would still exit out through my newly reconnected large intestine and ultimately the anus.  Think of it as training wheels for the colon, allowing the parts that reconnected to slowly remember what to do as it healed, without the full burden of the body's needs.  

This leads to an important question--what happens to the butt when all this is happening, the normal "end?"  It depends on the situation.  If my first colostomy, since there was an intent to reconnect, there was a section of the rectum left, a small pouch.  This still created its natural secretions, a mucus lubricant the digestive tract creates to help move things along.  As such, I still saw some output of this material from time to time.  Then, when the loop ostomy was established, I saw a little bit of poop make its way through from time to time.  With this last, permanent ostomy though, my butt is officially sewn shut.  They removed portions of the anal sphincter and the whole connected rectum (since that was where the worst of my symptoms were coming from, especially) and sewed it up, within the butt crack.  There's no visible difference on the outside, really--it looks like a butt.  How much is left or not left depends on the situation.  

I could tell a difference between the colostomy and the ileostomy immediately.  Firstly, there is a visible difference looking at the piece of exposed large intestine compared to the small intestine.  The pink was very similar, but how it stuck out and how it was shaped was different.  The large intestine was thicker and the small intestine was smoother, but what struck me more so was how different the output was.  The large intestine performs a lot of the water absorption, meaning that the stool that passes through that area has a chance to dry out a bit.  The poop that came out of the colostomy was viscous, like a thick chili or pudding and usually brown (depending on what I ate).  What came out of the ileostomy was usually yellow and purely liquid.  This required different strategies in how I wore it.  Sometimes, the force of the thicker stool of the colostomy led to some different kinds of leaks, but a small air leak wasn't necessarily something to be immediately worried about.  I tended to (and prefer to with this new one) to wear the bag sideways, strapped to my side.  A small leak with the ileostomy was more dangerous, since the liquid would certainly find a way out, and it was also much more acidic to any exposed skin.  As a result, I tended to wear this with the bag pointing down, allowing gravity to help keep stool away from any skin that I had failed to cover with the putty or the barrier and not slosh up on any potential weak points. 

With the colostomy, I had to figure out how to wear shirts again.  It is much more apparent in tight shirts that there is an odd, size-changing bulge depending on how full the bag is.  As such, it's more helpful to have looser shirts, particularly so I can check it as needed.  With the ileostomy, I had to figure out how to wear pants again.  If it was hanging down, did I tuck it into my pants or leave it untucked with a very long shirt?  Seatbelts, too, were tricky at best.  Maternity pants turned out to be my best friend, and I also had a couple pairs of suspenders to wear with pants that were otherwise a little too big.  

In July of 2013, the ileostomy was ultimately hooked back up (after being turned away in May for still being too sick to go through the surgery, as a result of some miscommunication that I'm still a little bitter about).  So, yes, with Melvin now (as of November 2017), this is the third ostomy that I have had.  It should be the last, and it is permanent.  And I will say that while this is familiar, each has had its own quirks.  

Day to day care is mostly the same across the board.  I have always used a two piece system and adhesive putty.  The putty is formed into a ring that is placed directly around the ostomy, on the skin immediately surrounding the exposed intestine.  Then, the flange is a square bandage piece with a hole in the middle, plastic ring around that.  I center this over the ostomy as well as I can and smooth the adhesive over my abdomen.  Finally, I clip the bag to that ring, making sure it clicks all the way around, and head for my heating pad, using the heat to help the glue adhere to my skin.  This whole unit is replaced every three to five days.  The bags that I use have some plastic Velcro at the bottom that I undo, unroll the end of the bag, and am then able to empty the contents between bag changes.  Others have a clip that they remove and unroll instead.  There are many styles, personal preferences, and accessories (skin protectant, bolsters to help certain leakages, support belts to help distribute the weight of a full bag, etc.) available, but the basic idea of the setup is the same, that there's a piece that connects to the body and a bag that collects.  Sometimes, Melvin chooses that moment to blorp all over the counter, but it cannot be helped--just have to clean up and start again.

I can shower with the bag on, I can swim, I can mostly go about my life.  I have no control, however, when poop moves along into the bag, apart from trying to space my eating/drinking (think about that point when the morning coffee hits your colon, like clockwork).  This means, too, that if there is a leak, the timing of it is largely out of my control.  This means that, yes, I can live out my day to day life, but I excuse myself to ensure that all is going well and empty the bag as necessary.  I pack emergency supplies in a few strategic locations and deal with emergency blowouts as necessary.  It's always there, strapped to my side.  I can ignore it some of the time, but I still make sure I budget time in my week to perform scheduled changes and manage my colostomy supplies as far in advance as my insurance will let me.  It's just another aspect of my health that needs attention.  

For me, the tradeoff for this intimacy with my large intestine and staring down its production several times a day is that I am in a lot less pain.  It seldom hurts to have an ostomy, for me only when passing certain foods or when the skin around the ostomy is a shade of angry.  I truly hadn't realized how much I had been putting up with.  The symptoms that I had had, too, with the fistulas (inflammation created random pathways between two parts of my body, in my case an infection pocket out to exit through a hole generated in my skin and another connecting the same pocket with my uterus) in particular, were potentially dangerous, apart from being incredibly annoying:  I cannot say that I miss them.  This is not a desirable situation, but it is a livable one.  And in my particular case, it is and was my best quality of life.  

People with ostomies live normal lives, just with a few modifications.  I choose to be open and vocal about my situation, because I want to educate as part of my own coping and disposition, and I want to be available as a voice for those who maybe cannot articulate what this really means to them.  That's not how everyone with an ostomy will be.  I invite any questions that are there to be asked that I can answer, acknowledging that I have my experience to offer and not a medical degree.  I will try to come back an add any of these questions as an addendum to the bottom of this post. 

This is my normal.  This is the normal of many, many other people and people that love them.