The Significant Other

Recently, my husband and I celebrated 8 years of marriage.  It's not a long time to most people, but it is a feat.  One we are both proud of.  Marriage is HARD.  Things can get ugly.  Things can get messy.  And life is going to happen.  There is no Cinderella story hiding anywhere.  Throw a child or two or...things get even more interesting.  And even harder and definitely messier.  How many times have we went to bed with dishes in the sink (which I really don't like because it's like things are left undone), but we are just done after we get our little guy in the bed.  And I really am when my husband isn't here in the evenings to help out.   

Now lets throw in that "life happens" bit.  Some of us (probably all actually) have had life happen to us before we ever start dating and get married.  Life happened to me at 14 years old.  I was side swiped by the bad health semi truck and diagnosed with Crohn's Disease.  Then, it would come back and run over me a few times in the form of relapses. 

Today, I thought back to the time I told my husband about having Crohn's Disease and then of my ileostomy.  I've written a blog about it previously which you can read here.  And then my husband shared his view of learning about this which you can read here.  It was awkward as it's not really something I talk about with people.  It's more of something that gets mentioned in conversation when it's a need-to-know situation.  People don't always respond to this sort of conversation with welcome arms.  But if I was going to be in a serious relationship with a guy, he needed to know.  I kept the explanation simple, I had my spare ostomy bag and other supplies there to show him, and I left it to where he could ask questions if he needed to. 

This information could have scared him off.  He could have walked away right then.  But he didn't.  He didn't even seem phased by the news.  Maybe it was just a good poker face.  I don't even remember discussing it beyond that very much.  It was just like he thought, "Okay, this is a part of her.  She's doing well.  And if she has a change of circumstances, we'll deal with it." 


People, this is the way it should be.  Your special person may initially run away scared.  That's understandable to me.  News like this, when it's not something in that person's normal environment, can be overwhelming.  But that person shouldn't stay in that mindset.  And you don't want to be with a person like that either.  If they blow you off in bad (or potentially bad) health before you get married, they sure won't stick around if you do get married.  The vow says "In sickness and in health".  Having health issues isn't good.  But in some ways, it could be a blessing.  You get to see where your significant other stands on that issue before you commit the rest of your life to them. 

Bend So You Don't Break

Almost a year ago, I wrote a blog post called Living Another Normal.  It was regarding my experience of life after having my large intestine removed and having an ileostomy bag "in its place."  With that I was forced to learn how to bend my mind enough that I could learn to live with something few people, especially as 20 year olds, have to live with.  I had to learn a new routine of changing out the ostomy bag every few days, and if it required changing not long after it had been changed (in other words, I sprung a leak), then I had to learn to adapt quickly and get it changed again.  If it did this repeatedly, I had to learn what I was doing wrong to keep this from happening as it's not good for your skin.

The thing with this experience is that it's not just relevant to ostomy bags or to medical issues of any kind.  Living Another Normal, that's almost a daily thing.  When a couple gets married, they have to learn to live with another human being that is a complete opposite of them.  One spouse likes to sleep with background noise, the other wants complete silence (but still gets background noise as the other spouse snores), one wants extra blankets on the bed because they must be cold blooded, the other barely wants sheets on the bed, one wants sports on 24/7, the other loves Food Network (we all know I win that debate).  We learn to live with the differences of that other person.  (We just may not like it.)  We bend a little or we would just break.

When children enter the world, whole lives are changed (that's an understatement) including those of the grandparents, aunts, uncles, whoever is close with the parents basically.  There are frequent diaper purchases and stinky diaper changes and trying to figure out which diaper works best and doesn't cause your child to break out in an awful rash, doctor's visits because it seems like the child always has something going on and there is an overabundance of online articles that shakes first time parents to their core, overtaking the living room with toys that get picked up before bedtime but you wouldn't know it by the next morning, buying the next size up in clothes what seems like every few months as these kids literally grow overnight...we could go on and on.  We learn to except that kids are expensive and messy and that's our new normal.   We bend a little more because the stress of raising kids would surely make us break.

And of course there are life events that aren't really major but can provide a thorn that pokes a person at the worst times.  For example, a couple of weeks ago, we lost our mailbox after someone hit it.  The individual was okay, thank goodness.  And they took care of the cost of replacing the mailbox.  But until we could get that done we had to deal with getting our mail sent elsewhere.  (Like I said, not a big deal, just an aggravation.)  Another issue we had around that time was with our car.  My husband drops off our son at his babysitter's house and the car failed to start up when he went to leave.  Unsure of the cause of this issue, he called a tow truck, and the gentleman jump-started the battery where my husband could then start the car and take it to the mechanics.  That's where I come in.  I came to pick him up there and take him on to work.  He's a teacher so he had to be in contact with school so they could cover his classroom until he got there.  The school had to bend as the issue was out of anyone's control and my husband's classroom needed supervision in his absence.  My husband had to bend as his normal morning routine suddenly came to a halt due to what we learned was a dead car battery.  And I had to bend as I also was going to be late to work.  But that's life and if any of us had been staunch against giving a little, life would have been even harder.  We had to learn a new normal for just a temporary time.

Life happens.  We've all heard that and we've all experienced that.  And it's true.  If you're living, life is happening, sometimes to us and sometimes through us.  We choose how we react to it.  If I had been anti-ostomy, well I'd probably still be a very sick individual.  I wouldn't be able to live like I do now.  I'd still be on awful medication.  But I decided to bend (more than just a little).  I chose to take an option less favored by most.  And that allowed me a new normal, a new life, and kept me from breaking.

Being Okay With Being Me

I was listening to a podcast this morning, and the speaker mentioned about how she didn't really like who she was.  She was a shy and quiet person who didn't deal well with people I guess you'd say.  She wanted to be like others: outgoing and the life of the party.  And then God spoke to her one day.  He told her she was the way she was supposed to be, and that by being that way, she was spared the introduction of things in her life that could have potentially ruined her: exposure to outside forces that have a way of changing people for the worst and taking over their lives in all areas over time.

This spoke to me.  I find myself like her.  As a child, I was painfully shy.  I wouldn't go up to anyone and start a conversation for anything unless it were my immediate family.  I was probably in high school before I'd order food for myself at a restaurant.  It's sad I know, but so so true.  Talking to people just didn't suit me.  I'd rather stay home than be in a crowd any day.

I can't say that it's not still painful sometimes, but I've had to step out of my comfort zone to be an adult and run a business.  Not talking to the client will never get a business going.  Thankfully, texting is a "thing" and it definitely works for my personality.  I can "talk" all day through words on paper and screen.  But don't try to get me to hold an all day seminar somewhere.  That would drain the life out of me before I even got started.  Plus, I still Do Not Like crowds.  My husband is a basketball coach.  This might seem selfish, but sometimes, I just can't go to the games.  I can't deal with all of the activity and lack of personal space.  He has come to understand this about me.  And he is disappointed at my absence, but he understands because he feels the same way by being a home all day long.  He has done it, but it doesn't feed him.  He likes to be out an among others.  He doesn't seem to need to talk to them necessarily.  Just being out of the house helps him keep his sanity.

My need for solidarity has kept me sheltered from things that I would have been gullible enough to get sucked in to.  Him wanting to be out with other people has always kept him too busy to get himself into trouble with the world around him.  We are who we are meant to be.

Of course, when I was going through all of the ups and downs of Crohn's, I wanted to be someone else.  I wanted to be my classmates who were healthy, who were not afraid to go out of the house, who weren't having to take medicine everyday, who didn't have their physical appearance change due to prednisone, and who could eat PIZZA!  I wanted to be my sister, my twin, who didn't have to deal with the devastation of Crohn's.  I wanted to be who I was before Crohn's attacked my intestines.   Why did I have to deal with this?

And now that I have an ostomy, there have been plenty of times I've just wanted to take the ostomy appliance off.  I've wanted my pre-ostomy body back that didn't need to have an ostomy appliance attached to me.  Then I remember that pre-ostomy, I was sick and wishing I could have my life back.  What did the ostomy surgery do for me?  Essentially, it gave me my life back.

All of this is to say, that I don't know why I am the way I am necessarily and why my life was hit with Crohn's Disease.  But there is a reason.  Right now, I'm able to share what I deal with and think about by having Crohn's and an ileostomy.  And hopefully, someone out there is reading this and thinking "Okay, someone in this world thinks like I do, and they deal with things that I've got to deal with.  I can do this, too."  We don't need to change ourselves as much as we need to embrace who we are meant to be.

"Mama's Diaper"

I've had an ileostomy now for over 11 years.  And sometimes, I don't want to think about it too much.   I don't know what people's reactions will be to it.  I'm sure there are those who think that I shouldn't have had such a surgery, and that I should have tried other options (although I don't know what those would have been at the time.)  The deal is done people.  There is no need to say what should have been done.  My large intestine can't be put back in.  Nor do I want it to be.  That thing gave me nothing but trouble: sending me to the bathroom at all hours of the day and night, being a literal pain in the rear, and affecting my overall health in ways that I believe I deal with to this day.

Also, it probably is a source of discomfort for some as there are those that don't want anything to do with medical talk.  There are those that don't have the capacity to deal with the gruesome details at any level.

My husband was like that, but I think after almost 8 years of marriage, he's starting to come around.  He didn't want to see me changing my ostomy bag for the longest time.  Then one morning recently, I woke up with a leak and time was not on our side.  He just had to let me do my thing right there with him in the room.

And then there are others who probably just don't understand what it is even as I'm trying to explain it.  I'm not sure I would have.  I had a very detailed and visible amount of information given to me.  Also, I was able to get a first hand account from an ostomate over a period of time where I felt free to ask any and all questions that I had of her experience and what I could expect.

Of course, sometimes talking about it is beneficial not only for me, but hopefully for others as well.  There are times that I don't mind going into some detail on what an ileostomy is and why I have it.  I wouldn't have had as much confidence and security in having the surgery and dealing with life with an ostomy if I hadn't had the information I was given. With this blog, it's my goal to share some of my experiences.

One such experience happened several years ago now, when my oldest nephew was closer to my own son's age (2).  Sometimes things happen to where others might learn about your ileostomy whether you want them to or not (leaks at work or maybe the pouch manages to poke out from under your clothing, for instance).  The latter incidence would be the case I'm referring to.  I'm not sure what happened exactly, possibly just stretching and my shirt raised up enough that the bag was showing.  The little guy saw it and looked sort of confused.  He'd never seen anything like that before.  Somehow, I managed to come up with a way to relate it to something he understood.  I called my bag my diaper as, at the time, he was still wearing a diaper.  That explanation seemed to satisfy him.  There were a few times after that, that he would point it out and say it was my diaper.  I wonder if he still remembers that.

My son has seen my ostomy bag as well.  He seemed to have that look of confusion the first time he recognized it.  I told him the same thing I told my nephew, that it was "my diaper".  He seemed to be content with this explanation as well.  He never mentioned it again until recently when I was getting dressed one day.  He looked at me and then at my husband and said "Mama's diaper".  It caught me off guard as, like I said, he hadn't mentioned anything about it since I had told him what it was in a way that he might could relate.

There are days that I don't want to deal with it or think about it.  But I have to.  It's here for good.  At least I can get a smile and a chuckle from the innocent recognition and understanding that a little guy can offer.

Advance to Go

Traffic...it's one thing I could do without.  But couldn't we all?  Growing up in a rural area, I don't have the daily experience of the congestion that the mass amount of cars converging onto the same roadway at the same time can offer.  And I don't mind that.  Because when I am in that situation, I don't care for it.

A couple of days ago, I found myself in just that situation though.  My lack of patience doesn't like it either.  My family and I were traveling home from vacation.  We had spurts of this sort of traffic the whole way to our vacation destination.  And heading home provided the same scenario.  Some of the random slow downs were due to automobile accidents (where it didn't appear that anyone was physically hurt).  But some of the other stop and go situations...I have no idea why those happened.  Maybe it was just the matter of too many people trying to get to the same place at the same time.

Traffic isn't the only issue with traveling.  And I wasn't the only one with a limit to my patience.  We were traveling with my two year old son.  The longest he's been in a car was maybe for four hours.  This trip was about 9.5 hours without stops calculated in the equation, so it easily turned into 12 hours with the necessary pit stops.  He did well considering.  He is like me in that he needs activity most of his waking hours.  Just sitting and watching the landscape pass by is a tad bit monotonous for us.  Being strapped in a car seat hinders activity.  And his ability to keep what items he had with him in his grasp and within reach was a constant struggle.  Things were falling in various places in the car, and I was just hoping they'd be retrievable later on and that we wouldn't run out of items to keep him occupied.  His max time on any one item may have been ten minutes.  Ten gloriously peaceful minutes (not necessarily quiet, just peaceful).

Snacks have been a must.  I didn't even care how many crumbs he was spreading.  AS long as he was happy, I was happy.  A vacuum fixes those sorts of things.  We made sure to stay away from gooey, sticky items though.

He slept a total of 30 minutes going to our destination and heading back home.  He couldn't have been sleeping too soundly though.  With all of the stopping and starting, his poor head kept flopping around.  If anyone knows how to remedy this, let me know.  It was pitiful.

But as I mentioned earlier, we had to make needed pit stops.  We needed to feed him meals and change his diaper.  Feeding him is not too big of an issue.  But changing a diaper can certainly be a struggle.  In this day and time, there are still plenty of places that do not have changing tables in their restrooms.  It makes only slight sense why the men's rooms don't have them (although I'd imagine even that there are plenty of dads out there who wouldn't even agree with that statement as they are put in a predicament on where to change their child's diaper if they have them in their care without mom around).  I can't fathom changing my child on the floor of a public bathroom.  I'm not too keen on the changing tables.  And I found myself without the changing table option twice.  Now, there have been times where I've just laid him in the back of my SUV as it's large, flat, and the uplifted hatch door provides cover in the case of rain.  However, the back was loaded down with luggage.  We had moved his car seat from the middle of the back seat over to the side.  This left sizeable space to lay him down in the back seat and change him there.  Thankfully, the weather was sunny and dry so we didn't get drenched.

Of course, I needed the pit stops as well.  Those opportunities are a must when you have an ostomy.  Most every stop, I make sure to check things over with my ostomy (the need to empty the bag and leaks).  I definitely hope to not find leaks.  The what-if with traveling can be a source of anxiety.  Changing my ostomy bag anywhere that's not my bathroom at home is just not natural.  And to need to do so at a service station or restaurant restroom is also not private and doesn't necessarily provide the needed items to make a decent change.  Normally, we ladies are just hoping to have toilet paper.  But with my ostomy, now I'm hoping for unhindered access to water (as the sink is located outside of the stalls normally) and maybe paper towels (some restrooms have the hand driers to be more green).  It's inconvenient and unaccommodating.

I've had to change at a service station and at a restaurant before.  The service station restroom door was located on the outside of the building so I needed to go inside and get a key to enter it.  Thankfully, with that, it made it more private.  I was just hoping it was decent and provided what I would need to do what I needed to do.  It did.  At the restaurant, it was also for only one person at a time.  Which is good, except for the other women who needed to use the restroom, too.  It seemed like it took me twice as long to change as my normal layout and routine had to change to fit the situation I was in.  I felt awful because I had sprung a leak while on a date with my now husband whom I had only known for a short time.  A date with which we were with some of his closest friends.  I felt awful because my shirt got soiled in the process, but thankful that I was wearing a long sleeve shirt under a short sleeve shirt.  And I certainly felt awful that I was hogging the restroom.  This is not one of my most favored memories.  If I could figure out a way to change in the car, a way that would allow for privacy, I probably would do that, like when I change my son's diaper in the car.
Any ostomates have tips to offer for ostomy changes on the road?

Learning Never Ends

I'm thinking that if one isn't learning, then one must also not be breathing.  It seems that I learn something new everyday.  Even when I don't care to because it's something I didn't care to learn.   For instance, I learned today how quickly my two year old can go from happy and healthy to grumpy and sickly.  Yesterday, he was fine.  His appetite had been well as of late (especially for a toddler).  He was mostly content with his surroundings and circumstances.  But today...not so much.  He woke up in a mood that did not agree with him or his parents.  When asked if he hurt, he would point to various parts of his body and with no replicated answer when asked repeatedly to see if we could pinpoint his distress.  But eventually, the abnormal behavior and excessive crying called for the expertise of a medical professional.  There, he was diagnosed with strep throat, and we have him on medicine to get him back to his formally healthy self.

This week, I also learned how to put up mini blinds.  And that there are different types and sizes.  And that are house uses different types and sizes.  And...some are more of a pain to hang up than others.  Because I was in a groove with the first few, and then I had to put up a different kind.  I lost my rhythm.  It took more time than I wanted to devote to it, which made me a little ill.  And then I needed help with the installation from my father.  When he said what he did to get it installed, I realized that my frustration with the process had made it more difficult then it needed to be...(the story of my life.)  My repair skills are below the beginner level I believe.  

I also learned the simple joy of being able to take the aforementioned two year old to the zoo for his first time.  He has several books with animals in them and some of these books make the sounds that the animals make.  But to actually have him see these animals live and up close was a fun experience.  At such a young age, he didn't have much patience to stand and watch the animals.  But he was at least able to recognize and imitate them.  He was able to see them as real creatures and not just pictures in a book.  And he was able to touch them.  How many times do you get to pet a kangaroo?  It may seem simple to most people, but it was a wonderful day.  I look forward to experiencing this again with him as he grows.  

Years ago, I learned how quickly illness could take over one's life when I got sick with Crohn's Disease.  One day I was a healthy teenager.  And it seemed like the next day, I was sicker than I could have ever imagined being.  But unlike my son's bout with strep, this illness wouldn't be alleviated with medication.  For some, the medications prescribed at least seem to offer some relief.  But there is no known cure to be had. 

Like with the mini blinds I mentioned, things aren't always cookie cutter.  The blinds were different sizes and types.  Crohn's has varying degrees of severity.  It affects each person differently.  I learned that the phrase "practicing medicine" is very applicable to the medical world when treating chronic illness and when treating people.  We aren't robots.  We all have our own unique DNA and therefore respond to certain treatments differently.  What may work for one may not work for another and thus the practice of medicine comes into play.  My husband is a basketball coach.  He has his team practice different sets of plays to use at different times of the games.  However, one play may work against one team but not another.  Therefore, his team needs to know the different plays he calls at any given moment.  It still may not work.  But it's a matter of trial and error, and it seems to be that way with medicine.  The one making the calls just has to pick what seems to be the most likely path to achieving the desired result. 

And like with the simplicity and joy of a zoo visit, my journey with Crohn's has taught me the heartache of living with daily pain so that I might be able to fully enjoy the simplicity and joy of living without pain.  Had I not went through all of the hard stuff, had I never been put in the place of having ostomy surgery, I don't know that life as I know it now would have meant what it does now.  Would I have been humble enough to appreciate where I am?  Would I have been able to understand the decisions that people like me have had to make?  I don't think so.  I know there are those who don't understand the idea of having ostomy surgery.  But how can one really understand something they don't physically and emotionally have to deal with?  One can only have empathy in such situations.  But may we all learn to love the simple things. 

What Is It Now?

Well, here's the thing about having a chronic illness: it will always keep a person wondering what's going to happen to you next.  For example, several weeks ago, I wrote about my issue with a partial blockage.  I'm just going along through life trying to eat healthy, watching my carbohydrate intake as I also have Polycystic Ovarian Syndrome to deal with and thus am subject to insulin resistance and (BOOM!), along comes pain that I'd never experienced before, uncertainty as to what to do about it, and educating myself on how to possibly keep it from happening again but still being able to eat within the guidelines that will improve my overall health in the future.

What else keeps me on my toes and wondering when it's going to happen again?  Those nasty leaks from my ileostomy appliance like to happen at times.  I'll go several weeks, months even, and be doing well with wafer adherence and wear time and then (BOOM!), I've sprung a leak.  Most recently, it was after a routine, scheduled, before-bed-time bag change.  I woke up at around 4:00-4:30 in the morning and there's a mess waiting to get even messier.  (Not to mention that I had trouble falling asleep that night and didn't fall asleep but just a few hours before that.  And I would need to be up only a couple of hours after this time.)

Another issue that I've had recently, that was also ostomy related, was some major itching at the wafer site.  My first concern was that it was leaking.  However, it never actually had that feeling.  It was just itching almost non-stop.  For those of you who have an ostomy, you know how impossible it is to scratch an itch under a wafer.  For those of you who don't have an ostomy, imagine how it is to have on laced up shoes, and then have your foot start to itch.  But maybe you're not in a position to remove the shoe to scratch the itch.  Maybe people who've ever had a cast for a broken extremity can relate to this as well.  I had changed my wafer and bag just a couple of days before (I strive for a routine of changing ever five days), but I had to get this itchy thing off.  There was no leak.  I just had some slightly reddened skin.  I cleaned the area well with warm water, dried the area really well and applied my new wafer and bag.  Why did this happen?  I don't know.  The temperature is much warmer now, so maybe it was heat related?


And then there's health insurance.  In the eleven years that I've had an ostomy and have ordered ostomy supplies and with the various health insurance companies I've used and policies that I've had, I've never had a limit on the amount of supplies that I could order.  But earlier this week, I called to order my supplies in bulk (I order supplies in larger quantities once or twice a year) and the individual I talked to said my insurance would only cover enough supplies for one month at a time.  I suppose that since the brand of ostomy supplies I use packages their ostomy bags in a box of twenty, that makes my monthly allotment one box of twenty bags and two boxes of wafers as they are packaged at ten per box.  I find this aggravating. My need for ileostomy supplies is 24/7 for the rest of my life.  My husband pointed out that I should be okay with the allotted amount.  But I don't understand why an insurance company gets to tell me what I need.  It's just another part of dealing with a chronic illness though I suppose.