Melvin and Me, Part 5: Blowout

Well, I knew it was bound to happen at some point.  Inevitably, the system fails and one must deal with the repercussions.  And I suppose that works not only for an ostomy but also for the body as a whole.  

So Melvin--innocent swatch of pink on my side usually encased in medical tape, glue, and plastic--burbles along his merry way in life.  This open patch on my abdomen exposing my intestines doesn't have timing, bowel movements flowing to the rhythm of peristalsis, where food is naturally moved through the digestive tract by a series of auto-controlled contractions.  For a "normal" body, the remaining matter of said food is collected and packed in the rectum, awaiting a time where it can be properly evacuated.  While there is an urgency to this process, it's not the same as how my colostomy works.  Melvin can't store anything--when it hits the exit point, it has to go somewhere.  There is no sphincter control there for me to try and stop it, like trying to cover a water hose only makes the water come out at a higher pressure.  Everything empties into the bag as soon as it arrives.

Normally, everything is caught smoothly by a bag that clips to the part that actually sticks to my abdomen.  I've already had a minor blowout--too much pressure on the bag at the wrong angle meant that the contents (thankfully mostly air) had to escape somehow.  But this was a different caliber of disaster, one that involved a lot of hurried commands, a mad dash to the bathroom, a load of laundry, carpet cleaner, and bleach.  

Not only was there a massive leak, it was leaking from both sides, a steady stream from under both the right and left of the appliance.  I had two hands on it and was trying to direct Andy on how to best help.  After he had brought some needed supplies closer to me, I had him hold the loose pieces so I could wash my hands and carefully remove my shirt and pants, trying not to drag any additional part of them through the small, brown puddles.  Once that was out of the way, it was much easier to start the cleanup, working with four hands to clean the skin, prep the bag change, place the new bag, and then start cleaning up the aftermath.  

Andy was incredibly supportive through this, almost cheerful, even.  After I had my hand on the fresh bag, warming up the putty with my body heat to help the glue stick a bit better, he was wiping down the counters, putting bleach down the tub (where effected garments were rinsed), and starting the laundry.  

I felt like a child.  I can remember one of the first times that I was sick and threw up on the carpet or some such thing.  I felt terrible because I was sick, but I also felt guilty watching my parents (I forget which, here) clean up the mess.  I know it wasn't my fault, then or now, but I still felt guilty for making the mess in the first place.  And I felt helpless.  The only worse thing would have been having to clean it up by myself.  

That new change lasted the night.  I had an even bigger blowout the next morning.  The whole bottom of the appliance came out in the force of that one, naturally just after I had finished getting ready for work.  After the initial blorp, when we had taken the bag off, I felt the rising pressure of another wave, and had enough presence of mind to realize I wasn't going to make it to the toilet:  with a hasty lurch, Melvin pooped into the sink instead.

And with that, I was on my third bag in twelve hours.  I'll throw this out to the world--these supplies are not cheap, and I can only order so much at a time under some of my insurance specifics.  

Andy texted work to let our respective managers know we might both be a little bit late and I sat with the heating pad on Melvin, helping the glue adhere again, while Andy finished cleaning and his own morning routine.  Meanwhile, I reached over to my hidden stash of chocolate in the bedside drawer.  Andy even brought me my phone that had been left in the bathroom, specifically so I "wouldn't have to be alone with my thoughts."  

Needless to say, that colored my day (and frankly my week) a healthy shade of brown.  Thankfully, I was already slated to go talk to an ostomy nurse that same day to check in and talk strategies for taking care of my colostomy.  This did mean that I would be performing yet another bag change, so that she could check Melvin directly.  I was afraid to eat all morning.  Eating tends to result in movement for me about twenty to thirty minutes after.  I just wanted to make it to my appointment without pooping my shirt or needing another emergency change--with the way the last few hours had gone, I brought a change of clothes to work in any case.  Apart from being scared to eat, I was also hypervigilant, moving my fingers along the edges of the appliance to make sure it wasn't leaking, running my mental systems check to note what was happening in my body, and re-tucking in my shirt I don't know how many times within the day after stealing another glance.

After my appointment, my nurse told me that she hoped what we had discussed would help me have greater confidence.  I'm still mulling around those words, acknowledging that they were absolutely spot on.  Blowouts are inevitable, sure, but they can be uncommon.  This is only my third in as many months, to be fair, and this period has all been about adjusting.

And yet, I felt down.  My illusions of control and general confidence in my ability to perform my day-to-day functions were absolutely shattered.  I still need to sit in a tub of bubbles and mope for a while yet, if I'm honest.  

I was talking to a friend about this a bit, since he had asked me earnestly how I was doing, and he gave me a piece of advice that I really needed:  "Give yourself as much grace as you would give someone else in your position."  I think this a reminder that we all need from time to time, that it is very easy to be far too hard on oneself particularly when I know I would be telling anyone else in my position not to be so harsh to themselves.  I'm too close to myself, sometimes, and need to take a step back.  I have been expecting perhaps a bit too much of myself to be okay in this situation. 

Or as an alternative theory, I think I've been trying not to feel the full extent of everything, only dancing on the surface of the weight of my circumstances.  What I mean is that I don't feel much overwhelming relief or gratitude regarding my surgery and general situation, but then I also don't feel much grief yet either.  I'm avoiding a lot of this major processing--both consciously and subconsciously-- to focus instead on acting, tying up loose ends, and getting on with the different things that need to be done.  I've learned this habit, shutting out the emotional toll of my health concerns so that I can manage the other aspects of it and, sometimes, to simply survive it.  Only when things have reached a certain point do I feel I can process them, and that certain point is always put further an further off.  Hence, therapy.  And in therapy recently, we've talked a fair bit about having compassion on my body instead of my general sentiment of distrust and frustration.  That means, being gracious to my body is not something that I've been good at for a while now.  Hell, I've said this before in different words, so it makes all the more sense that I would fall back on familiar strategies.  

And I think that's partly why this week has thrown me off so much, in that my circumstances have forced me to confront some of the grief that I had been evading.  New habits, healing old trauma, sorting through the new, this is going to take a lot of work.  I feel simultaneously that I am addressing this and ignoring it, which means that I need to give myself a fair bit of grace here, too.   

I think we're all guilty of failing to be gracious to ourselves, whether we've had reason to or not.  Reacting with compassion instead of anger or frustration for ones body as well as ones mind, it's a tough cycle to break out of.  I would urge you to try this:  any sympathy that you might feel for me in reading this, put that same compassion back into yourself, if only this once.  I'm going to try to do the same.  Please bring some of that kindness back to yourself.  Blowouts happen; be gracious to yourself.  

Melvin and Me, Part 4: Poop Jokes

As we're working on getting the basics of life sorted out, Andy and I are slowly adding in different activities.  After visiting my parents in the St. Louis area, my radius of comfort is continuing to expand, where I remember that I can in fact plan for emergency situations and am confident in my ability to ask for help and otherwise find what I need.  I've even had hypothetical conversations with hospital pharmacies asking where people get ostomy supplies in remote areas, if for some reason I have exhausted all of my emergency supplies.  

Now we can start actually making impromptu plans again.  Or plans that are not events, just hanging out.  This has taken some rethinking and adjusting, as simple as that kind of low-pressure situation is.  

Firstly, I find that I am still in a state of overshare.  What I mean is, while I'm still wrapping my head around my new normal, I am talking what feels like too much about certain subjects in a way that I'm not quite certain is socially okay.  I'll sit back as a passenger to my own mouth as I, unprompted, tell someone that my butt is sewn shut.  This, at least, seems more for those that have some background into what has been going on, thankfully.  With new people, I feel the pressure to say something burning at my throat and can often ultimately quash it, unless it's relevant to the conversation and I feel there is enough of an invitation--it definitely still counts in the "what's new with your life?" line of questioning.  This is all VERY new and significant in my life.

And then there are the weirdly normal parts of it.  For example, I'm going to highlight something that happened with my friend, Eve, from church:  Hi, Eve!  Eve is total sweetheart--the Asian grandmother you didn't know you had.  After coming back to choir, she made sure to give me a hug and also took a moment to say "Hi, Melvin!" to my lower, right-side abdomen.  I think Eve is one of few people in the world I am absolutely okay with talking directly to Melvin.  I had a nice laugh.  It brightened my day in a way that I had not expected and still makes me smile to think about. 

As another example, I'm going to bring up my brother David.  On Christmas presents, David likes to make very personal tags on them, directing presents to you paired with some kind of inside joke or family memory.  This year, my Christmas present was directed to "Melvin's Person."  It took me several minutes to stop laughing.  

On the other hand, there have even been a couple of jokes that Andy has made where I had to stop him and make clear that I was not ready for that particular kind of joke yet.  I'm still trying to find exactly where these lines are, what points are uncomfortable to have discussed or joked about openly and where they are not.  In fact, there may be some jokes that I'll never actually be okay with someone making, even after a certain amount of time has passed.  Within that calculation, I'm not a huge fan of body humor in the first place, and I think it's fair to say that I'll like it even less, watching to make sure that fart and poop jokes don't stray into places that are too real.  I suppose I won't have a hard and fast rule for a while yet.  

Andy is very open, though, in trying to help me find more ways to be comfortable and flexible while I find my own footing.  Now, since I no longer have sphincter control for when my body expels stool or gas, Melvin will burble away with a fart or another splort of poop whenever it pleases him.  And sometimes, that will be in a very quiet, tense moment or while I'm giving a presentation at work.  I have figured some of the timing between eating and when Melvin tends to move most significantly, meaning that I can at least try to time my meals to correspond accordingly.  Mostly, I don't really mind this--it's out of my control and I'll be very honest about what is happening if I'm asked.  Andy asked me, in a half-joking, half-serious way, if it would make me feel better if he farted more audibly in public alongside me, specifically so I wouldn't be the only one.  I laughed and told him no; as weird as the offer is, it was also very thoughtful, particularly in our strange world.  

We don't know what the rules are yet.  I can't help him find ways to help me until I have identified what they are, and it's just too soon to expect that to be there.  We're three months in on a lifetime change.

Even calling my colostomy "Melvin" is a weird little joke in and of itself.  I'm not mocking any particular person--actually, my mother picked the name, and I cannot remember the specific context, just that it stuck and there was no use trying to call it anything else.  Firstly, it is less of a mouthful.  "Melvin" sounds less intimidating than ostomy or colostomy.  Also, I find that it adds levity the situation, sounding more playful and more human.  And even if the other party doesn't understand when I say "Oh, I had to take care of Melvin," they have the opportunity to ask if they want to know or to let it go if they don't have the time or the inclination, which makes it clearer to me when someone has invited me to explain or when they're just being polite. 

Most importantly, though, it separates my ostomy from me.  Melvin will always be a part of my life, but it does not define my life.  I can sit back and blame Melvin for misbehaving instead of blaming a sense of "me" that I cannot control.  It moves the lack of control to another "being."  It moves the situation out of my sense of self.  That gives me space to cope and space to breathe.  

Not everyone names their ostomies.  Some people need to keep it as clinical as possible or otherwise not give it the dignity of a personality or even spare a thought for it more than they have to.  I would not want to suggest that there is a right way to emotionally deal with a permanent or temporary ostomy at all.  For me, though, I like to root out the why I react and respond the way I do, to explore meaning in a different way and find the healthiest way to go from there.  

Here is some of what I've found:  

• Part of my coping is this blog, a space where I don't wait for an invitation and work through some of these actions and feelings by writing them down in my own voice.  
• Part of my coping is telling more people about Melvin, to free others who might be hiding with their own symptoms a place to be included and represented, at least in part.  
• Part of my coping is to teach.  

The rules will make more sense as we go and will continue to change as I do.  I will be clear when boundaries are crossed, particularly when I have figured out how to articulate them.  And I will continue to find humor where and when I need it.  

Also, Melvin says "blorp."  

Melvin and Me, Part 3: Winter with Melvin

Now that we've gotten through the holidays, winter seems to have officially settled in.  Where Andy and I are, we had our first real snow on the 24th and the 26th was our first day of real cold, flirting around zero degrees (negative eighteen, for you Celsius folks) without the windchill.  It means that Andy and I try to leave earlier for our adventures, leaving time to properly bundle and allow grace for any difficult driving, though more frequently it's difficult drivers that require this grace.  I have happily been pulling out my favorite sweaters in my day-to-day wardrobe again.  

Andy and I tend to have two differing philosophies to cold--Andy's initial response is "it's not cold" though he does ultimately enjoy bundling up in certain clothing pieces and I don't even mess with it, ready with a scarf, hat, something more or less immediately.  As an illustration, I'm the one on the right side from this comic.  

Yes, winter is decidedly here.  And this being my first winter with Melvin, I have made some observations.  

There is something freeing about wearing bulky clothing--Melvin is a lot less noticeable, whether he is full or not, within the context of a super comfy sweater.  I am incredibly discreet as long as I dress "normally" for this time of year, and it is very nice not to have to consider that aspect when choosing my clothes.  The Stealth Belt itself actually does add just that little bit of extra warmth on my core.  However, I do still have to be careful that some winter wear isn't sitting directly on Melvin, specifically snowpants in my thought process.  After a shower, too, any remaining wetness from the appliance tends to stay wetter longer as there is less air circulation under my warm layers in the same way, adding some humidity which gets uncomfortable.   

Remember that feeling when you've just bundled up, layers upon layers with your mittens finally covered correctly by your coat, and you realize you have to go to the bathroom?  Now let's imagine that your clothing is not specifically designed to be removed at that convenient location, untucking all of the layers instead of just dropping ones pants.  Sometimes, I'm wrestling a few layers just to give Melvin a quick check, particularly if it's the first BM in a new bag.  AND when performing this emptying, these layers have to then not fall into the path of the now opened colostomy bag.  Normally, I tend to wear a cami specifically to help fold up my other clothing to keep it out of the way, but that gets trickier when we add in these heavy layers.  Think about every time you've trailed long sleeves through dinner reaching for a roll or how a scarf or a tie manages to flop in just the wrong direction at an inopportune moment.  I'll add another obstacle to the scenario, public restroom in the mall, with one's winter coat, purse, all shopping bags while still trying to wrestle everything out of the way while still managing to unload the bag.  I have tried pinning some pieces to the wall with my shoulder, tucking some weight under my armpit and some over my shoulder while still trying to empty the bag in the toilet (as opposed to on the seat or floor) and without any backsplash--it's a balancing act, to say the least.  

Another issue:  I definitely get dry skin in the winter, upping lotion to body cream to get some additional moisture.  Whelp, I cannot really treat that part of my body for dry skin.  If I put something on my skin, it decreases the ability of the flange to stick to my body.  And potentially not treating the skin could cause it to break down more readily and become unsticky because of weeping, angry skin.  Thankfully, that's hasn't been too much of a problem yet, but I am very conscious about treating my skin as nicely as possible around the bag site and preventing any leaks that I can.  

And for a silly kind of problem, between the Stealth Belt and the fabric backing of the bag, there is a bit of static that can build up now when I'm taking either or both off, there is that familiar crackle, particularly with a fresh or empty bag that sticks to my sides in just that right way to be annoying.  

There was a very odd moment the other day, something that stuck out to me as one of those "Life with Melvin" moments I never could have predicted.   Apart from the branch manager, I am the only one in the office that has a window.  It is a floor to ceiling window, a good eight feet or so across.  It offers me a great view of the gas station, but, hey, it's a window.  People come by to take a look outside and sometimes say hello, which can be wonderful or frustrating, depending on what kind of a project I'm on.  Recently, I've taken great delight in walking down to Andy's desk and letting him know whenever it is snowing.  Now, the downside to this window is that it can get quite cold in my little corner.  This last week it was VERY cold in my little corner.  At the time, though, I wasn't quite cold enough to grab my coat, but I had resolved to layer a little bit better so that I might be able to feel my fingers and toes.  And then without warning, there goes Melvin, burbling away into the bag with a healthy blurp of fresh (enclosed) stool.  Then, my next thought was "Ahhhhhhh" as my body registered the warmth against my body where the bag was, that part of my abdomen felt nice and toasty.  And then I mentally stopped in my tracks and  had a good laugh, understanding that I was, in fact, grateful in that moment for the warm bag of poop strapped to my side. 

My what a weird world this is.  But, there are still comfy sweaters and less pain than before.  So far, I'll chalk it up as weird but a win.

Melvin and Me, Part 2: Melvin Milestones

Some elements of life are starting to settle down, and now that we are out of survival mode, we're starting to acclimate to life as it will be.  This means slowly re-adding components back in, and trying to sift out of recovery mode.  

The first of this reclamation is the most important to our current standard of living:  I went back to work. I came back on a four day workweek, then a four day weekend, and have now gone through my second four day workweek and into a three day weekend.  It's been a smooth transition so far.  Sitting upright and at attention for that long in a day was certainly rough for the first couple, but I have been able to invest more of my attention into actual work as the week continued.  When Melvin ultimately makes his presence known with a splorpy burble under my shirt, I have so far been able to immediately head to the bathroom to check that there is no leakage and immediately empty out the bag, so that I didn't have the warm bulge under my clothing.  In my happy little cubical, no one else really notices that bulge; I expect this hyperawareness to settle eventually, but I do also constantly think about the first time I might not be able to check Melvin right when I want to.  I am similarly anxious but simultaneously confident in myself about that first training with a client--either via webex or in person.  That will be another first to simply get through and be done with.  

I also had my first blowout the other day.  That is exactly what it sounds like.  But it happened in the most safe, lowkey way that it could.  I woke up one morning with the bag full of air.  I tried turning to the side, so that I could be the little spoon and evidently put too much pressure on the bag.  I knew what had happened immediately.  I quickly ordered Andy to grab a rag, and I tell you he can move when he knows he needs to.  I held the rag over the leak and eased out of bed.  Nothing on the sheets or blanket, only a small bit on my pajamas.  All told, there was only about a teaspoon of poo involved, and I had help.  And I had nothing else to do that morning.  AND I was planning on doing a bag change anyway.  It was absolutely the best case scenario for a leak.  Andy and I know full-well that these are inevitable, but it feels good to have the very first one out of the way.

While I have not yet been back to the gym, I have been able to start slowly working exercise back into the mix again.  I'm rather skittish about this still, since especially any jumping kind of motion does not feel good on the bag or unused muscles or incisions that I'm still adjusting to, but, well, I like Zumba, even if it's the Wii version.  Plus, I have the safety and comfort of my home as I start pushing these limits, much as I miss being part of the group.  I need to feel confident in even these small steps before I will be ready to go back to it, all the same.  

And there was one more trial yet to conquer:  a stay away from home.  It was just an overnight, but it is simultaneously the furthest distance I have been from home as well as the longest duration to this point so far.  That may not seem like a big deal, but so far I have always been in a close radius to my emergency supplies and resources.  I did not expect anything to happen, necessarily, but my options for if something did were uncertain.  I have an emergency kit that has mostly stayed in the car so far, and I also had another full bag change in my suitcase, in the case of a double-blowout.  This was a visit to my parents in the St. Louis area, though, meaning that if there was a blowout, I would also have a lot of willing, understanding, helping hands with my parents and Andy--this would absolutely be the best case scenario if something were to happen.  The uncertainty, though, is what makes this tricky to me.  In this instance, I did continue to feel better the longer we were there, but I believe I will continue to go through this cycle of planning/overthinking for each outing.  Even simple things like how will I negotiate the counter space with my accessories has me inventing strategies and pre-planning, particularly for the first public bathroom bag change.  This, again, is another instance of getting the first one under my belt and then feeling all the better for it.  

More milestones will come as they will, and I am grateful for how many anxiety lessens with each one.  I hope to be less hypervigilent about Melvin soon while also allowing myself the grace to be anxious.  There are a lot of small pieces to adjust, reconcile, and other actions that I don't have the right word for yet.  All in good time.  

Quick aside, because I have been asked about it by a couple of parties:  yes, I tend to wear my ostomy bag more to the side than I do down.  The benefit of wearing it down is that gravity is your friend when trying to empty the bag.  However, this does mean that the bag can be in the way of one's wasteband or a seatbelt or whathaveyou.  I have been using a product called a Stealt Belt (check out their site here!) to keep the bag close to my body for personal security and discretion.  They do have a style that wears down, but I'm quite enjoying the style.  Currently, I have the Stealth Belt Pro and a custom order that has a fun pattern.  Check it out!