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Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

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Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.

 

Boo!

Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

Ostomy Number One

It’s no secret. I love my Ostomy. I really, really do. But it wasn’t all fantastic exuberance. I started out unsure, scared and entirely uneducated. It was rocky y’all.

In my life I have had three Ostomies. Today I will share with you the origins of Ostomy number one.

I was seventeen. I had been sick for years. The first day I ever heard about an Ostomy or that you can even live with part of your bowel removed was when I was in the hospital during a hard flare that we were unable to control. Not a new thing at all for me. I had just come from a semi sedated colonoscopy and still felt bloated and painful from the procedure. I knew it was bad when the screen was turned away and the doctor got very quiet, annunciated his words and became very serious. He was face to face with the living monster that is IBD, trying to remain professional. As an adult who has been on the business end of a doctor clicking into ‘work mode’ I understand he was taking samples, noting disease symptoms and more. As a teenager lying on the table, I felt broken and wrong. Vulnerable. As if I was what he was angry about, not the disease actively chewing up the insides of a young girl. It was painful, scary and very isolating.

A few hours later the doctor came into my private room located at the end of the hall. My grandparents followed behind, grim looks on their faces, they found a place against the wall. Doc came to stand by the side of my bed and said something along the lines of. ‘You need surgery to remove your colon. You are not responding to treatments. You are going to have an Ostomy’. I started to cry. How do you live without your intestines? Then he got mad, raised his voice and scolded me to Stop Crying! ‘You are going to have this surgery and you are going to be Just Fine! People live without part of their bowel all the time. And You are going to be one of them.’
Head swirling, I half heard words about a surgeon he had contacted to do the procedure and he was off.

And that was it.

I had zero information. My grandparents could offer nothing but sorrowful glances in the now very cold room. I felt light headed as the blood drained from my face. I tried to wrap my mind around the idea of being purposefully hollowed out and surviving that. What kind of life would that be? My grandfather had been a medic during the war and through all my bleeding, painful episodes and late night fevers, he was a rock. Not anymore. With a grim set to his mouth he repeatedly cleared his throat, swallowing hard. Damn! He’s trying not to cry. My grandmother gave up on even trying to keep it together as her flowered hanky shakily dabbed already puffy, tear streaked eyes. Grandpa snapped into action, grabbed grandma by the shoulders and firmly escorted her out of the room. Just as he passed the door he looked back, eyes tracing my form from feet up, then connected with mine. He paused and called me my special name only my grandfather is allowed to use, and left with my grandma before him. I heard feet echoing down the hall and my grandmas full on crying.

I was left alone.

Well, Shit!

Looking back, that time in my life had been one very long flare with moments of ‘all hands on deck, she may not make it through this one’. So many hospital stays, medications, blood transfusions, z-tracking iron into my butt, IV hydrations, banana bags, Gatorade and pureed food. I was trying my best but barely squeaking by. I was overly familiar with illness and pain. It was part of my identity to the point where being defeated by IBD was a very real possibility that I had begun to be okay with. I held hands with death as lightly as possible. I didn’t want for it to sweep me away. But in an odd way death was more of a possibility at that time than growing up was. Most of me was fighting, but a small part tickled against the back of my brain that the fight I was giving was really not working that well and one day my battle may be over whether I wanted another go at treatments or not.

I even had ‘the talk’ with my grandparents where my funeral was planned out. I numbly worked out my wishes about end of life care, resuscitation, organ donor status, even a somewhat healthy picture was chosen for my obituary.

This was life at seventeen for me.

IBD was artful in its scraping away at my youth. It savored my childhood and was desperate to take more.

What I dealt with health-wise made high school stress, bullying and all the other things teens deal with feel both inconsequential and insurmountably difficult. There was no easy place in my life back then.

But then came a new way to fight I had never heard of.

Ostomy

I was admitted a day before the procedure into a private room in the big city teaching hospital an hour from where we lived. In perfect timing with a desperate need of a break from drinking, then vomiting the Go Lightly, my surgeon came to visit, followed by a gaggle of students in white coats. They listened intently as my surgeon and I talked. My surgeon is the nicest, most intelligent woman I have ever met. She ignored those students and focused on making sure I understood the procedure I was about to undergo. She sat on the bed beside me, pen in hand, drawing on the sheet as she spoke. The images she created on the stiff white cotton came to life as pen imitated needle and finger became scalpel. My curiosity turned to hope under the light of her knowledge. She spoke quietly but excitedly as she wove the words that created my new life of Stoma, Ostomy and J-Pouch. All questions answered and mind filled with possibility, she and her team left.

What was blank unknowing filled with guesses and assumptions became confidence. By the time she was done visiting I Believed I was going to be better. I looked forward to the procedure. I felt like a member of the team. This thing wasn’t being ‘done to me’. I was an eager participant.

From then on Dr. D was my Dr. Frankenstein and I would be her lovely little monster. Re created from parts that were otherwise broken into something marvelous and fantastic. I was made new again.

Early the next morning nurses carefully prepped me. I was first in line for the surgical suite. They made that sound fancy. As I stood with gown pulled to the side we designated a stoma site. The other nurse, gathering the belongings I had placed in a clear hospital bag turned to compliment the choice. ‘Okay’ I thought to myself ‘This is working out already. I can do this.’

In a chilled room, laying on the gurney amongst shelves with positioning blocks, supplies and rolling carts covered with fabric, I was given my IV and covered with another blanket. Curious, I asked what all those things were for. A nurse counting white gauze squares set her stack aside, answered, then gestured to a set of double doors indicating the operating room. ‘Ah, that’s where the magic happens.’ After a while a gentleman held up a syringe and asked what I wanted to dream about. ‘All the things I’m going to do when I’m healthy again.’ What will you do first? ‘Go to the beach.’ That sounds great. I watched as he pressed the liquid into my IV. The head of my gurney was lowered and the countdown began. 10, 9, 8…..7?…..

And that’s when my life began again. I woke up cozy and warm, covered in heated blankets. It felt like I was only asleep for a few minutes and magically placed in another room where a nurse brought me to reality by forcefully ordering me to Breathe Deeper! Your oxygen is too low. You need to try harder and show me you’re with me. Getting closer, she peers in my eyes. I had not realized she had been speaking to me before now. Gosh she’s grumpy. Here I am all cozy, staying out of trouble and she’s all worked up. Breathing. Pfft. Oh! Rubbing me hard on my upper arm, her words finally click in. Ah, I get it. In through the nose, out through the mouth so she knows I’m trying. She greets me. Realizing I can understand and respond to her words she asks if I know where I am.

I am moved to a room and the learning curve began. I saw my Ostomy for the first time. Walked that evening. Learned to empty my bag. Switched from liquid to soft foods. Learned to change my Ostomy. Walked more. Changed my Ostomy all by myself. Felt good enough to wear sweat pants and began to learn how to wear an Ostomy under clothes.

During that time I transitioned into myself. Life really did get better.

No more pureed food. Woo Hoo! Real food tasted so good it was downright colorful washes of happy, tingly euphoria to eat again. I went to the beach, water park and had more energy at school. I helped my friend buck hay (much to the chagrin of my surgeon) and even went to a couple school dances.

And that’s where my story leaves off.
That was my first Ostomy.

Ostomies and Emotions A Family Members Reaction ~ Part 2

Here is the second part of A Family Members Reaction.  I must say I learned a lot about my husband and his experience through this article.  I love that after almost 16 years of marriage I am still learning something about him every day.  Even when he is away in Philadelphia.  My dearest went through changes that challenged him, made him stronger and more open to what must have felt impossible at the time.  He came through with flying colors and a year and a half after permanent Ostomy surgery we are stronger than ever.
Please enjoy the second part of my husbands post.

 

 

I don’t think I’ll mention any of the medically relevant stuff regarding the recovery period.  That is somewhat separate from the emotions one feels during the shock and awe phase of the surgery.  Anyways, I can write up that kind of article some other day.  In this second half, I’m going to focus on some of the nitty-gritty emotions a male-partner may feel; what I felt, after this change.

It is somewhat tuff on guys, being wired the way we are.  Or should I say, wired the way I am.  Certain things I just have no feeling about when my wife obviously expects me to ‘feel’ something?  So-and-so just got totally whatevered on facebooks?  Meh?  Some actor is doing something to someone?  Double-Meh?  So when it comes to day-to-day stuff regarding an ostomy, emotionally it is no different than how I felt about her before the ostomy.  There are three places where this changes: The Bathroom, the Ballroom, and The Bedroom.

Your bathroom will become stuffed with all sorts of gear-changing implements.  And an odd odor will begin to make itself known from time to time.  This wasn’t hard on me; although I personally do not do well with bathroom smells.  Emotionally, I felt something akin to resignation.  This is how things are going to be.  If it is not something I can control, why change yourself emotionally?  Like an average, emotionally despondent dude, I ignored what I couldn’t change and began fixing what I could.  I set up shelves and reorganized the master bathroom to increase storage space.  I installed an overhead heater to blow warm air on the toilet area where Christy sat to change her gear.  (We lived in Oregon and that master bathroom got SUPER-COLD during the winter months)  And I tried to do other little things to the bathroom to make it a more comfortable place to be.  I fixed things.  Guys, at least guys in my family, are fixers.  Give us an emotional problem, and we’ll try to do something to fix it.  So if your ‘man’ goes all ‘Home Improvement’ on you after you get home from surgery, he is probably accepting what he cannot change by changing what he can change to make life easier or more comfortable for you.  That’s what I wanted to do; what I attempted to do.

The ballroom is a bit of an extension to my thought on this emotion.  Not only does the ‘Ballroom’ represent a handy word I can use to have three consistent ‘b’-words in a row. (I know you all want to read about the bedroom, so I had to fit SOMETHING in to keep your attention between Utah and The Rockies)  The Ballroom represents public perception.  And, to a lesser extent, private attention.  It is the little-kid-with-thick-glasses syndrome.  That kid that has something different that distinguishes him from the normal crowd.  That kid has two options, to express and embrace those glasses, or to cover them up by using contact lenses.  Ostomy gear is much the same.  It was hard to see my wife’s, formally smooth belly replaced with a tan-colored ostomy bag.  Change, even change you cannot change, can be difficult to accept.  All I can say ladies, is that you need to provide some time to your significant other so he may accept and embrace that change at his own pace.  That is what helped me.  I had to have a month or two to ‘get used to it’.  An ostomy is nothing to be ashamed of, however, the initial exposure to something like this was, well…different.

I guess it is hard to explain; suffice to say, I was uncomfortable and afraid.  This was not my first experience with an ostomy; Christy had a temporary one earlier in our marriage.  So I will have to express a bit of what I was feeling back then, mixed into what I felt after the permanent ostomy.  I felt afraid.  Afraid I had somehow broken her.  Afraid of touching anything abdominal.  Afraid of causing her embarrassment or reducing her self-worth.  I was afraid I wasn’t loving enough, or too loving.  So I subconsciously feared that silly little bag hanging off of her abdomen.  And I needed some time to get used to that fear….and a doctor to tell me that sex wouldn’t cause her any harm.  I have a whole story about THAT from a half-dozen years ago that I’ll regale you with should you ask….

What was that other thing?  Oh…being uncomfortable.  Yes.  It is quite a change to have to ‘work around’ that little accessory.  And to get used to it.  I guess I was uncomfortable with how it felt, how it looked, and how my emotions were reacting to it’s presence.  I am somewhat bashful regarding the things that happen in the “potty”.  Anyone who has watched the American sitcom ‘Scrubs’ could identify how I am around “bathroom topics” by comparing me to Dr. Reid (played by Sarah Chalke…I believe).  The things people do in there should just not be discussed!  And if it is, you must use silly words!  And NEVER talk to people through the door in the bathroom!

And hey..if you are in there doing some ‘business’…turn the fan on to drown out the unmentionable ‘noise’!

Now these noises appeared in the living room at times.  Or at the dinner table.  Or I could see an ever-changing shape in the front of the clothing area.  Initially, it made me uncomfortable.  Why?  Because it was new, different, and outside my ‘usual’ comfort zones.  I’m sure Christy picked up on this.  To you “virtual passengers” accompanying me on my plane ride I will say this; in no way did this discomfort reduce my love, caring, or understanding for my wife.  I simply needed some time to get used to the change.  If I were to give any advice to you regarding this change, I would recommend wading in as opposed to jumping in; referring to the old swimming pool analogy.  Hell, you probably know your significant other way better than I do, so it is your call.  For me, wading in with sexy blouses, flowing dresses, and long t-shirts for the first two months was helpful.  It didn’t make me forget the ostomy was there, but it allowed me to process the change better; over a longer period of time.

 

That is the ‘private’ component to the ballroom.  Sexy outfits, similar to Awestomy’s Booty Shorts.  (I know you’ve seen the pic.  Yeah!  I’m married to that! Muhahaha!) But the ‘public’ component is a bit harder on a guy.  As you may know, Christy is very outgoing.  More so than me.  I’m more of a conformist in many ways; I don’t do things that are significantly beyond the social norm.  I run through my mind the things peoAwestomy_Review_Booty_Shorts_by_Christyple will say, or think, or JUDGE if they see my wife’s gear.  Emotionally, I experience two main things.  The first is the anger and pity I feel for our society.  In the United States we come out of a public school system that seems to encourage children to be horrible to that which is different.  Or apathetic parents who gossip in front of their children.  Or news stories talking about how horrible someone is for having that extra soda, smoking cigarettes, eating bacon, standing crooked, having big boobs, having small boobs, Kardashian’s ass, or crazy face tattoo guy.  Stories about a woman overcoming adversity, and living life to the fullest are rare on the headlines.  Oh..they are there, but they don’t ‘bleed’ enough to ‘lead”.  So we have a society that will judge my wife for having gear.  And I feel anger and pity for those participating in this non-empathetic mindset.  Don’t get me wrong…there are tons of bad people out there.  And my ‘understanding’ of people in these stories only go so far.  I guess I attempt to measure these things with the experiences I have, and always try to give people the initial benefit of the doubt.

But I digress.  Anger and Pity.  These initial emotions are what I feel towards those that will inevitably look down on my wife for the gear that she has.  The second component is fear; or perhaps an odd form of overprotectiveness.  I have a fear that someone will say something horrible to her on the beach, at the pool, or in a restaurant.  That fear drives me to hold her back at times.  I recognize that compulsion and do my best to avoid my unfounded overprotection.  Perhaps if your guy-dude-person-spouse is being overprotective, or he is pushing for longer shirts, one-piece swimsuits, or whatever, don’t assume he is ashamed to be around you, or with you, or of you.  He may just be worried about stupid people saying shit to you that will hurt your feelings for no good reason.  It only takes one snarkey emotionally shallow teenager to ruin your day.  I don’t want to see any day’s ruined.  That is no excuse for me to hold my wife back from her outgoing, expressive self.  And as long as I can recognize WHY I feel the way I feel, I can check myself when I need checking.  But it did take me some time to get to the point where I could realize these emotions.  So, if your spouse is doing stuff that seems to be overprotective, this may be why.

Now! On to the Bedroom!  A fitting time, as we have just hit a large patch of ‘turbulence’ and my laptop is bouncing dramatically up and down on my fold-out tray.  How Exciting!

I love sex.  I really, really like having sex with my wife.  And I feel no shame with the sex that we have; with or without the ostomy.  Sure, certain things had to change in our relations.  Some spontaneity was lost as she likes to excuse herself to switch out to a swim bag.  And as I mentioned earlier, it took me a few months to get used to the gear.  But within, say four months, we were back to our regular rambunctious selves.  Well…as rambunctious as two adults with little spare time and two very energetic children can get in this day and age.

At first, we had no sex.  She had to wait for six weeks or so to get cleared by the doctor.  So you have a good six weeks right there to get used to the gear.  After that, we waded into things using camisoles and night gowns and other mild…and not so mild lingerie.  Then the mild coverings were slowly removed from our routine and we simply started having our normal whimsical, as-you-are happy time.  It may be my nature to “wade into things” as opposed to “dive into things” that drove this process.  And the situation may be different from your significant other, but there it is.

Emotionally?  Well, as I said earlier, my emotions in bed were tempered with fear of causing more damage.  A lot of stuff happens down there; a lot of impacts, and jostling.  To disrupt that area with some over-vigorous force would naturally cause problems…right?  Well, I was wrong about that.  And it took a doctor asking me how things were in bed to attain this realization.  The realization that when Christy had her first temporary ostomy, my lack of marital participation was completely stupid.  After that, I don’t know what to say.  As long as you are there emotionally, and participating eagerly, it doesn’t really matter much to us guys.  Dress up in something skimpy now and again.  Be creative.  And for the good lords sake…if you like something we do with you in bed TELL US!  We men are notoriously bad mind-readers; and as a loving spouse/husband/partner we simply want to give you the most pleasure we can, in the way you like it best.

But, that really has nothing at all to do with ostomies.  It is just normal pillow-stuff.  And that’s what sex will be once we get used to the gear.  Normal.  Sensual.  Real.  If you had good sex before the ostomy, in a very short time, once you and your partner are comfortable with yourselves again, you will have good sex again.  It may take a week, it may take a couple months, it may only take a little glint in your eye.  But sex is actually one of the simpler problems to solve.  One last thing before my laptop battery dies.  We men may not be good mind-readers, (we really suck at it actually) but, we can read emotions fairly well during sex.  If you are not into it, it’ll make things uncomfortable or distracting.  I am sure the opposite is true, should the guy not be emotionally invested.  If you feel that emotional separation during sex, either of you, don’t give up on the moment.  Have more sex.  Have conversations about what you like to do during sex.  And HAVE MORE SEX.  Remember, nerve endings have changed down there.  Something you liked before the surgery may not be as mind-blowingly wonderful as it once was.  You’ll need to work together to find those new, great things that will work as good, or better than the old things.

So have more sex!  It is easy to get out of the habit due to stress, or work, or life IN GENERAL.  A life change of an ostomy can create an emotional wall if you build it brick-by-brick.  So, knock down that wall with frequency and passion.  If you don’t have the passion, have more frequency.  The passion will return.

Well.  That’s all I got for this flight.  I think we are descending into Philly.  I really appreciate you taking the time to read my ramblings.  And for giving me someone to talk to on this long-arse flight.  I hope what I have written can be of some help for those going through some emotional issues, either ostomate or boy-toy of ostomate.  If you want to hear more from me, or if you want me to expand on anything I have said.  Just let Christy know.  And don’t forget to like her on her facebook page!  She lets out a happy cheer gets a big ol’ grin whenever someone does that.

My final message to you as I rapidly descend in this turbulent ‘flying’ aluminum tube of death; please remember to keep a positive outlook on life,  find enjoyment in the little things, and to be strong.

Reuben
aka Husband to Christy at http://www.crohniebolognaibd.com/

 

Ostomies and Emotions A Family Members Reaction ~ Part 1

A while ago I asked my husband if he would be open to writing about what it is like to have a wife with an Ostomy.  I left it open ended as I wanted for him to feel free to write on any topic.  I am proud of his honesty and openness.  My husband is very poo phobic, so he gets extra points for talking about anything regarding bathrooms or the things that traditionally happen in one.  This article is so amazing that I am breaking it up into two posts.  I don’t want you to miss out on any of the goodness, and this article is a long one.  So grab a beverage, tuck in, and enjoy.

My sweet husband Reuben and I.
Without further adieu  I present to you my first ‘Guest Blogger’, my sweet husband Reuben.

I have a somewhat procrastinative tendency.  So, when my wife asked me to do a blog about relationships and ostomies, I naturally said “Sure Hun!  I would love to do that for you.”  The unfortunate reality, is finding the time do create this simple blog.  I love my wife dearly; I just don’t often have much free time to write.

So here I am.  Stuck on a flying cylinder on my way to Philadelphia for a work-related training seminar.  And I thought…hey!  Now is a great time to discuss my feelings, emotions, and overall relationship stuff to a nice global audience.  Of course I could spend my time talking with these two nice ladies sitting next to me…unfortunately, I doubt they would like me to disturb their feigned sleep with more talk about bridges and segmental sections and cantilevered trusses…  So I will regale you, dear readers, with some silly guy-emotions I experienced during and after my wife’s surgery.

Let’s give you some background data on me.  I am an average 35 year old, crazy computer guy.  I work in the bridge consulting (design) industry.  And I am generally a fairly healthy, in-shape person (if you ignore the slight spare tire).  I met Christy nearly twenty years ago while we worked at the same entry-level pizza making job.  Well….she made pizzas, I washed dishes.  I’ve really never had the “patient perspective.”  I’ve always been the guy on the sidelines of the Surgical Prep area or hospital room cheering, or cringing, at what is happening in front of me, medically speaking.

Although she has had temporary ostomies in the past, I’m going to discuss my how I felt when she had the permanent surgery.  I can tell you, I went through a lot of emotions; even if I didn’t express them to the world at the time I was having them.  Please recognize that the perspective of these feelings are not coming from a patient.  I actually haven’t the first clue as to what it is like to go in for one of these procedures.  My most intense surgical experience was receiving a single stitch during a runaway-paring-knife-pie-making accident.  I understand that emotions of the patient are going to be astronomically worse than mine.  So please don’t take what I write as self-centered or petty.  My goal is to help patients understand what I felt during my wife’s surgery, and to present my feelings as a possible baseline for the spouses and relatives of patients going into this type of surgery.

 

The Surgery:

There is a lot of emotional strain when you witness someone you live with, love, and rely upon suffer through immense daily pain.  As the realization that the only choice we had was to implement the permanent ileostomy became apparent, a partner will go through a lot of feelings.  Most prevalent among them are fear, anxiety, depression, and relief.  Let’s break some of this down for you.

Fear:  I feared for my wife’s life.  What happens if she doesn’t make it out of surgery?  What do I do if they discover things are worse after they open her up?  What if she has a bad reaction to the anesthesia again?  How do I cope with the recovery period?  To be perfectly honest, some of these fears are sensational.  I knew deep down that things were going to work out.  I’m typically a very optimistic person.  From a slightly more abstract perspective, consider it the fear you feel when you are deeply in love with someone.  And on an average, normal day, they are unexpectedly not where you expect them to be.  OMG!  Are they laying in a ditch on the side of the freeway!  Should I check the news!  Oh….never mind, there’s the garage door opening indicating my wife is home and theoretically NOT dying in a ditch somewhere.

So yes, Fear is present.  But it is the fear for someone who is about to go through something real.

Anxiety:  This happens during the surgery / recovery phase.  Luckily, I was able to have someone watch the kids for this particular surgery.  Normally, when Christy had a procedure, I would have worry-duty coupled with kid-watching duty.  So I have to be as cheerful, calm, and collected so my kids don’t pick up on any harsh emotions.  They don’t understand fully what is happening, and will have much stronger fears than me.  I needed to be there for them first; when they are with me during these procedures.

For the permanent ileostomy, I was alone.  For several hours.  I distracted myself like I usually do…with simple video games, books, and long walks.  I know the people in the operating room are professionals and are doing a semi-routine thing.  But as the hours wear on, anxiety builds.

Depression:  Oh yes.  Depression is a bitch, even for an easy-going, semi-mellow, gamer like myself.  During the surgery I had ample time to consider what we could no-longer-do as a couple.  (mostly unfounded in hindsight)  Walking around Dornbecker’s Children’s Hospital, across the OHSU Sky Bridge, and around 9th floor waiting rooms, I contemplated the difficulties we would have swimming, vacationing, playing with children, and having that oh-so-luxurious impromptu spontaneous sex.  Images of how your life will change runs through your mind.  And it circles, dwells, and festers in your imagination.  These are the fears I can identify.  The fears that I know MUST be true.  What unimaginable things await me that I am currently unable to conceive?  And in this cycle of thought, a sense of premature loss surfaces.  And depression ensues.

Now…I’m going to break here just for a second to our readers.  For one, the drink cart just swung buy, and I don’t want to get diet coke all over my laptop.  Secondly, this is a good pausing point from my main thought process. I wanted to say that the depression I felt, the scenarios I ran through my head during Christy’s surgery were all bullshit.  Pure crap.  I’ll delve into that line of thought further down in the article; I just wanted to assure you, my fellow virtual passenger on this flight to Philly, that the depression was seriously unfounded.

Relief: When a person sees in their spouse significant pain for an extended period of time, the implementation of a ‘fix’ will present a strong feeling of relief. I suppose it is the opposite of the depression feelings.  You experience a feeling of hope for the future.  My wife had been in pain so long, and in such quantities, that I could have wept to see her eyes clear of pain.  Every day, this mother of two would wake up; if she slept at all, take a dozen pills, and start her job of running the household.  My daughter had home schooling, my son needed to be entertained, educated, and nurtured, and Christy had play-dates to organize, food to prepare, bills to pay, and medical expenses to track.  She rarely ever admitted to pain.  But you could see it in her eyes, in her walk, and in her every breath.  Knowing that she may have relief from this pain, relief for herself and her quality of life, provided me with relief as well.

When her surgeon met with me afterwards, I heard about how well she did.  And that she was in recovery for the next couple hours.  She told me exactly what went down and how things will progress from here.  I was prepared for the surgeon as I have had these conversations with her before.  I was told to expect Christy to be in very large amounts of pain for the next several weeks.  Apparently the removal of a rectum can be somewhat disruptive to your pain-sensing nerves.  But she made it out of surgery; she would be ok.  And we would begin the next phase of our journey.  Everything would be easy-going and straight-forward from here.  Or so I thought….

There are two medications that one can mix; an anti-nausea and a form of painkiller, that has a one-in-eight chance of causing the respiratory system to basically shut down.  Christy was nauseated and in pain, so naturally, she was given these meds.  Unfortunately, she was the one-of-the-eight that necessitated the statistic.  She said her nausea was going away, and that she was getting sleepy.  This was normal for a recovery, so I sat next to her as she went to sleep.  I whipped out my Nintendo DS, and started playing some Puzzle Quest.  A few minutes later, I noticed she made a deep intake of breath.  Then a minute later, another.  I was getting a bit concerned, but I had thought if anything was amiss, the sensors would go off.  About a minute later, a nurse came in to check on her.  She walked over to the head of the bed, and checked on Christy’s vitals.  Then hastily she checked them again.  I said “what’s up”, and she pushed the ‘blue’ button to call in others, then told me the room was “about to fill up”.  I know Christy wanted me to stay in the room, however, it was a small room, and I wanted to make sure they had plenty of space to work.  So I stepped just outside into the hallway and positioned myself clear of the door.  In under a minute, they had no less than eight people in the room, a crash cart, and some sort of mobile anti-drug treatment thingy on its way up.  The fear had returned.

I kept ‘playing’ my game in the hall, listening to everything being said.  Perhaps I looked like an uncaring doushebag, I don’t know.  Maybe they see this reaction more often than not.  I could have done nothing in that room for most of the time they were doing their stuff.  I knew it.  The best chance my wife had was to have these people recover her from the brink.  I was still there, about 10 feet away from her bed, but remained out of the way, and hopefully looking collected.  Inside my head was another situation.  I have something of an eidetic audio memory when I really ‘listen’.  And I can recall a good 85% of all the sound I heard at that time.  Hell, I could probably reconstruct a kickass timeline of the entire situation.  It was a very emotional place to be, although hopefully, HOPEFULLY, I looked calm.

I tried to switch off emotionally during that time; I was unsuccessful.  I ended up just burying those emotions and working them out nearly a year later with a psychiatrist.  I don’t know what the answer is when the center of your world is dying; how you ‘should’ react.  There is likely no right answer.  Hell, it still tears me up a bit to think about.  I guess all I can say to that is, if it happens to you, there is likely not a wrong way to react as long as you stay out of the way of the professionals attempting to bring your world back to you.  She recovered from O2 Stats in the sub teens.  And she is with us today to entertain and educate us in her articles. I, on the other hand, don’t play Puzzle Quest anymore.

There were no more surprises that day.  The meds they gave her to counteract the bad mix of drugs had a side effect of not controlling pain while causing the severe shakes.  Those shakes ended up cracking a few of her molars and causing extreme muscle fatigue over the next week.  But she recovered.  She had a permanent ileostomy.  And the rough-road of this surgery was finally complete.

Happy ending?  No…Happy Beginning.  That was just the surgery to convert her to a permanent ileostomate.  And the real emotions were about to begin during the recovery phase.  This last part conveys what I was feeling when Christy was recovering from her surgery.  My laptop battery is half-dead, so I really need to move on.  If you readers want more on my thoughts and feelings running up to, or happening during the surgery, send CrohnieBolognaIBD (aka Christy) a message and I’ll write more on the subject.

 

Want to read part two right away? I’ve got that covered.
Here is the link to part 2

 

Interview with a Six Year Old

Interview with a Six Year Old



Grace 6yo and Sean 3yo.  How lucky I am to be their mom.



I am a mom.  I love my children dearly and care about what they think.  My kids are smart.  They could see that their mom was not well.  To tell them to not worry and give them no further information would cause them to fill in the blanks themselves.  This would lead to unnecessary stress and worry.  I have tried to always be careful about giving accurate yet age appropriate information.  I stay open to their questions and conversations.  Recently I turned the tables on my six year old to see her view. 

Q- Who are you?
A- I am Grace.  I am six years old.  I like to swing.  I like to help make dinner.

Q- Who is in our family?
A- I have a mom, dad, brother and a dog.

Q- What are our jobs?
A- Mom stays home to cook, clean and do lessons with me.  Daddy works at an office and makes bridges.  My job is to do a good job in my lessons.  Brother’s job is to have fun and use the potty.  We all take turns feeding the dog.

Q- Do you remember what it was like before mom’s tummy bag?
A- Yes, mom had a hard time going to the bathroom.  She couldn’t play a lot with us and stuff.  But she read us stories and played puzzle and blocks with us on the floor. 

Q- How did mom get better?
A- Mom went to Dr. D and got fixed up.  She attached a tummy bag to moms’ tummy.  When mom was asleep Dr. D put it on there.  Moms gonna have it forever and ever.

Q- What is a tummy bag?
A- It is a bag that hooks onto your tummy and you poop in it.  There is a pink thing in there that the poop comes out of.  It doesn’t hurt.  There are big bags and small bags.  I like decorating them with my mom.

Q-What do you think about moms tummy bag?
A- It’s cool.  I always know mom has a tummy bag but I mostly see her as just my mom.  Most of the time I forget she has it.  She is the only mom I know that has a tummy bag and that is awesome.

Q- Is life better for you now?
A- Yes because we can do more fun things.  It’s like that whole bad part went away and I have my mama back.  That’s the most happiest part. 

Q- Do you think it was a good idea for mom to get a tummy bag?
A- Yep, mom can do more things with us and she will not be sick anymore. 

Q- Do you have any advice for other moms or dads who might be thinking about getting a tummy bag?
A- You can get rid of the pain and you will be able to run, jump, play and swing.  It’s okay if you get a tummy bag.  Your kids will still want to play with you.  It will make you feel better.