Staycation of our Dreams

The lives of the chronically ill are full of excitement. We get to be social, have experiences like no other, see things others never get to see, and travel. Am I making you want to take the bait? If I left the descriptions just as you see them above, it may sound like a vacation.

See a couple of weeks ago, there were a lot of people on vacation as Spring Break 2019 was in full swing in our area. We got to see their wonderful pictures on social media: sunshine and sandy beaches, luscious landscapes and plates of food to make one salivate.

My husband and I didn’t want to see the food part so much. We had more of a staycation as it’s called. We conveniently scheduled scopes for ourselves: me an ileoscopy, him a colonoscopy. Both of us were due to have them, and since taking off from work is more inconvenient than using the already given time off that Spring Break provided, we just made a scope sandwich with mine being on a Monday and his on a Friday. We didn’t even allow ourselves time for a weekend trip.  I don’t know about him, but I tried to avoid anything to do with food. That included feeding my son the day before my procedure. (I had to be on clear liquids all day.) Daddy had to take care of it. I have the habit of popping food in my mouth during the preparing of it, and I didn’t need to take that chance.

On clear liquids, you’re allowed Jello. Of course, it can’t be red or purple in color (the best flavors). I don’t care for lime. And the only other color left where I was shopping was orange. Let me just say that Jello is delicious when you’re hungry. Well, until you get to that third bowl. And fourth. Okay, Jello isn’t delicious. It didn’t take me long to remember why I don’t care for it. I was slightly nauseous and dizzy by the next morning and more than ready get the test over with.

(Here is where my staycation was social.) The time before the test, when you’re in holding and waiting your turn to be scoped, that went well. Smoothly actually. They let my husband come back with me. And they respected my wishes to remain unsedated (unlike the time before when the anesthesiologist got his undies in a wad when I said I didn’t want any drugs). They did put an IV access which I suggested they do to make everyone see that I’m not hard to work with and to make them feel better to have access if something were to happen to me. But I just don’t get being drugged for a test that takes five to ten minutes and that, at most, is uncomfortable right at the end of the test and with all the air they blow in your intestines to widen it for visibility. I know because I’m awake watching the whole thing. (This was my staycation experience and where I got to see things most other people never see. Exciting, I know!)

The travel part of our staycation was not so much getting to the hospitals for our respective procedures but navigating the hallways once we got inside. It seems that every time I’ve been, the location is moved. However, it’s not the location but the areas surrounding it (where once was a door is now a wall, the entrance is moved 25 feet down from where it used to be, the restrooms were there at one point but aren’t there now) that actually change giving the illusion that all is different. I used to be good at getting around the hospital, but now, thankfully, I don’t have to go enough to know where I’m going.

Although this isn’t the ideal spring break, things went well. My husband did get away for a little while and spend time with his parents who live a few hours away from us. This gave me some “me time” as well as our son was with him. We made it to our procedures on time, the tests went well, and we got good results. We even took the time to enjoy a movie as our son stayed with his grandparents.

The Lost Lion

It's been a few weeks since I've been able to sit down and take a moment to focus on writing a blog.  Being a mom to a busy two year old who wants to be involved in all you are doing because he is so curious about everything, a wife to a basketball coach who takes his job seriously as he should, and there was the whole Thanksgiving and Christmas thing right?  But there's this picture that I've kept on my phone because I felt like it would make a great visual of an idea for a blog post.

The photo is of a wooden lion.  It's a puzzle piece to one of my son's puzzles.  I didn't even know this piece existed in our home.  As long as I've seen the puzzle, the lion had been missing from it.  But my husband assured me that he had seen the lion at one time.  Where it was the next time he saw the puzzle was the mystery.  And there was no way that we were going to find out from our (then maybe a one year old) son.

How did this item get found?  It was found by me, the one who'd never even seen it in the first place.  I was vacuuming and my foot bumped the back of the recliner and something moved underneath the fabric.  I had to investigate.  Of course that involved digging into the crease between the seat and the back of the recliner which to me can be rather gross with crumbs and lint and who knows what.  But I wanted to find out what was in the chair.  And then I was able to reach far enough to grab it.  I was rather amazed as I never thought about pulling out the missing piece of the jungle puzzle.

I set him down and immediately took a picture to show my husband that the lost lion had been found.  The lion we hadn't really thought about unless our son got out his puzzle was now before us.  And then I just looked at the picture and thought, that's people, that's those who suffer with chronic illness.  We get lost.  We go day after day focusing on what ails us.  There are numerous doctor's appointments (with numerous doctors sometimes).  We get blood drawn so much and maybe spend so much time in the hospital that we feel more like a pin cushion than a human being.  And we take so much medication that we feel like we look anything but human beings.  Essentially, the idea of living beyond the day to day is lost.  A life beyond illness is possibly a dream but definitely not a reality and not something we believe we'll find.

I think that was me for a long time.  It was a big factor into feeling lost after graduating high school.  It seemed like so many of my fellow graduates had these goals and dreams beyond high school.  I was still reeling from just trying to make it through high school with what health I did have.  And certainly wondering when my next flare was bound to happen.  How does a person find themselves amidst all the chaos of dealing with a chronic illness?  For me, it took a long time.  It's like I lost the idea that I could be more than a person with Crohn's Disease.  As a kid, I wanted to be this or that, but by the time I got to high school, I had no idea what career path I wanted.  As volatile as my Crohn's was, I had no idea how I would ever be able to succeed at anything I tried.  There was a lot of fear for the future.

There's still fear to some degree.  But now, I look back and think that it all happened for a reason.  The ups and downs all happen to form you into who you are.  And they made me see God.  When I got so sick that all that was left was to remove my colon, I realized He was all I had.  And of course, all I needed.  As long as I had Him, He'd place the right doctors and medical staff around me and He'd give me the peace I needed in order to make a life changing decision, one that didn't make sense to most people.  And with that surgery, I got my quality of life back in order to fight other battles as I would get lost again in that even though I felt great physically, emotionally I was still struggling.  Friends and family were having great things happen to them, things that I had longed for for a long time: getting married and starting a family.  And I wasn't happy with my career choice.

Again, I was lost in a massive gray cloud.  But not because God had left me, but more so because I still wasn't giving myself to Him and letting Him do what He does: guide my life.  It's sort of like I thought that if I had my health back, life would be great.  But it just allowed me to see that there was more buried inside than I even knew about.  And the only way through was prayer from me and others and trusting that my timing would always be imperfect, but His will always be PERFECT.

And just think, the finding of a lost lion made this blog happen.

My Happy (or is it angry?) Toddler

I have a two year old (closer to the three side now).  To say that his two year old self is terrible is definitely not true.  Challenging, as he's frustrated by things we can't understand? Yes.  Neediness and independence bouncing back and forth every few seconds with "Mama, help me!" and "I do it"?  Oh, yes.  Moodiness?  As in: I don't know what child is going to show up at any given moment??  Oh...my...goodness!  The twos are the times that warm us up to the threes and fours from what I hear.  I don't want to say they are terrible because I feel that that is heading my way very soon.

Round One!  My day starts out with curiosity as to what child I'm going to walk in on in the morning.  If I have to wake him up, I have to brace myself for the incessant whining.  (He already hates mornings or at least being awakened.  Can't blame him there.  He gets that honest.)  If he's awake as is common on the weekends, we are usually in good shape as he is more cooperative.

Round Two!  We're on to the first meal of the day.  Will he want to eat or will he frown at every options placed before him?  Here, during the week, we are usually in better shape.  I make him smoothies as they are transportable and a great option if we're running behind schedule, they are nutritious (milk, peanut butter, banana, yogurt, that sort of thing), and most important, he loves them in whatever mood he's in.  The weekends are more hit or miss as I try to give him other options: fruit, oatmeal, eggs, all of which he enjoys most of the time.  But there are times that he just refuses more than a bite or two and just wants milk.   And then again, sometimes milk is a bad option, too.

Round Three!  Lunch time is very much like breakfast.  Most of the time he is at the baby sitters for this one.  But on weekends, I get to take over.  Now, I know he loves fruit, he loves peanut butter and jelly (or banana) sandwiches.  But sometimes, I think he must forget that he loves these things.  He'll take a bite and say he's done.  However, if I offer some junk food, he'll relax in his seat and be ready to chow down.  (For the record, he doesn't always get offered PB and J.  And I definitely don't give him junk food after he refuses the more nutritional stuff just so he'll eat.)

Round Four!  Nap time!!  One of my favorite times of the day.  Of course, it's one of his least favorite.  Nine times out of ten, he whines and cries at the mention of it.  "I don't want to take a nap!"
To which we say, you need to and you're going to.  He at least has to lay down, which usually ends up with him conking out within half an hour.  However just yesterday, he was playing hard and then the next thing we know, he's telling us he needs to go take a nap.  It had me stunned.  I was like "well, okay, that's great.  Thank you for being so willing to take a nap!"

Round Five!  Yet another meal time.  Again, it's similar to the others.  He has the foods I know he loves: macaroni and cheese, carrots, even broccoli.  But yet he seems to have memory lapses when he sits down to eat.  "I don't like it" he says in a whiny voice and sometimes some very convincing tears.  If we can get him to eat, the next thing you know, he's saying "I like it, Mama.  I like it."  And I'm like, well what was wrong with it a few minutes ago.  If he's still stubborn about eating, we'll pull out the "you'll get something special if you eat" and show him the said item.  Sometimes this works and most of the time it doesn't.

Round Six!  Bedtime.  It's much like nap time nowadays.  He was very good about going to take his bath (although he's never in his life time liked bath time), and then getting a book and going to bed right after reading.  He still loves the book part every night, but we never know the response to bath and bed time.

All of this makes me think back to the times I spent being medicated with steroids.  My moods varied greatly.  One minute, I'd feel calm and at ease, and the next thing I knew, I was raging (maybe not outwardly, but definitely inside).  I was easily frustrated.  If something wasn't going as I thought, I didn't handle it well.  I didn't want to be angry and irritated by seemingly nothing, but it seemed that I couldn't fight it.  There was whining from myself I'm sure.  There was definitely a lot of "Why Me's?" especially after I saw how puffy my face was from all of the swelling.  And there were many tears after having the repetitive relapses.  My parents may have awakened everyday wondering what child they were going to see first.  It was like the whole Dr. Jekyll and Mr. Hyde deal.  I can, with certainty say, I never pushed away food like my son does though.  That's one thing we don't have in common here.

Somehow, the people around me dealt with my shortcomings and emotional struggles throughout a very rough stage in my life.  May God grant me the grace to deal with my son's various life stages, and come out with sanity on the other side.

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.

My Stomaversary!

In just a few more days (May 30, 2007, to be exact), I will have my eleventh "stomaversary".  This was the day was large intestine was removed, and I was given a stoma (where the small intestine is brought to the outside of the abdominal wall to make an outlet for intestinal wastes) and my chance to live without the constant worry of active Crohn's Disease came to be.

Prior to this day, I had spent much time in pain except for the times I was taking prednisone.  And then I would feel crazy in the head, but I was pain free.  I'd imagine maybe it is what the Hulk feels like.  I would feel seemingly fine one minute, but then ready to go into a rage with the flip of a switch.  (I don't think I ever turned green though.)

I was also rather antisocial.  I mean, who feels like going places and hanging around others when you struggle to stay out of the bathroom?  It's like the never-ending stomach virus.

And of course, there was the whole issue of trying to be careful of what I ate. Even though, now looking back, I'm not sure how much of a bearing that had.  I couldn't drink water without pain at times.

When the day came that the doctor said surgery to remove my colon might need to be considered because we had tried all the medicinal options, it was a sort of defeat to the war I had been a part of.  All the battles I had tried to fight for some time had all ended in a loss.  It was the thought of, "How can I go through so much for so long and still come out on the losing side?"

But, then the time came when it seemed that maybe the war on Crohn's wasn't over.  That the surgery was another battle.  And one I would have to face and fight.  With prayers and support from the right people, I was able to do just that.

The day I went in to have ileostomy surgery, I was understandably nervous as I was about to lose an organ, a rather important one, and there wasn't a replacement for it.  But there was a peace that it's what I had to do to be able to move on with my life.

I'm thankful that so far all has worked out well for me physically with my ileostomy.  No Crohn's has resurfaced.  And I pray that it stays that way.  I'm thankful that the battles we think we've lost may actually be some of our greatest victories in the long run.  I'm thankful to be able to live a good life (although still imperfect as all human lives are), but I'm living.  With active Crohn's, I was just trying to survive.

But one thing I realize is the war isn't over even still.  And, for me,  it won't be until the day that I take my last breath.  There will still be plenty of battles to fight.  

From Pain to a Mother's Love

It's the time of year when we celebrate mothers of all kinds.  It's a day I now cherish.  However, there was a brief time when I didn't want to acknowledge it and and even longer time when I didn't understand it to know to appreciate it.

A few years and tears ago, Mother's Day was a day I wanted to skip over due to my own hurts and disappointments.  I had spent many years prior to this dealing with the issue of Crohn's Disease and all that brought with it.  Then, I dealt with the removal of my large intestine and having a permanent need for an ileostomy bag.  But with that, it seemed I had my life back.  Then, later on down the road, my husband and I would have to deal with infertility issues.  It's one of those times when I couldn't understand why God would allow me to go through something else so hard to deal with.

We had to go through many tests in order to understand what the issues were and how to best treat them and get the right plan of action in order to give us the best chance at conception.  With our first round of treatment, our hopes were very high.  And then, when we realized that it didn't work, those hopes came crashing down on top of us.  It left a gaping hole in my heart which seemed to overtake my whole body eventually.  There were people around us who were announcing that they were expecting.  Your mind says you owe it to them to be happy for them.  Your issues aren't their fault.  And if they could have helped you achieve your dreams beyond the many prayers that were said on your behalf, they would have in a heartbeat.  But when you're hurting as much as I was, being thrilled for those who are getting what you had taken away from you is difficult.  Very, very difficult.

Once we went through the second round of treatments, and I found out I was expecting, those wounds I had healed quickly.  Although there is still a scar, a reminder that things aren't as simple for some as they are for others.  It gives me the ability to be more empathetic as I would have had no way of understanding these feelings otherwise.  I am blessed to be driven to insanity one minute with my son's whining and toddler tantrums.  And I'm amazed when he sings his ABC's and recognizes letters and numbers that are written down before him.  My heart melts when he wants to give me "loves", when he lays his head on my shoulder, and when he points to me and says, "That's Mama".  I feel like a failure if he falls and gets hurt when I'm right there in arm's reach.  But victory is close behind when he will clasp his hands together at the kitchen table to say grace before a meal.

Being a mom now myself, I recognize more of what I never could see growing up.  I've heard stay-at-home moms call themselves Domestic Engineers.  That is a fantastic title.  They clean their home just so it can get dirty again in five minutes, prepare meals (sometimes for everyone in the house but themselves), change countless numbers of diapers, try to keep on top of the never-ending pile of laundry, keep siblings from hurting themselves and each other, taxi these same children to whatever event(s) they may be involved in (and to doctor's appointments), pay bills, run errands, make sure there's food in the house to be able to cook...I'm sure the list could go on.  I'm not a stay-at-home mom, but I have found that the times when my son is with me all day can be more tiring than if I had went to work.

And then I think about when I was so sick with Crohn's.  There were times I was in the hospital for days at a time.  My mom was there with me.  She has her own service-based business, and if she doesn't work, she doesn't get paid.  And while she was staying with me in the hospital, this was the case.  My parents would never complain if there was financial stress through all of this (and I'd imagine there was some of that).  There was a sacrifice there.  The one that says "I will move Heaven and Earth to make sure the one I love is cared for".  And it's not just the income that was sacrificed.  She gave up time with my brother and sister and father to be with me in a cold hospital, sleeping on whatever contraption they had, and I'm sure being woke up as much as I was through all of the poking and prodding they do throughout the whole day and night.

Mother's Day shouldn't be the only day to recognize the love, service and sacrifice and mom gives to her family.  This should be something to thank God for daily.  To my mom, to all the moms out there, to those who have stepped up to the plate of motherhood when maybe you didn't have to, we thank you and hope you know how much you are loved and appreciated not only today, but everyday.

Chronically Abnormal

The majority of this weekend has been rather lonely for me, slightly abnormal for what is usually occurring in my world.  My toddler son is with his grandparents for the next few days, and my husband has been engaged in prior commitments.  (I was hoping for a date night or day as the situation may have presented itself.)  With the lack of childcare responsibilities, my usual schedule of daily activities is not as demanding.  But it's felt strange.  

Normally, I have to take breaks for diaper changes, clean-up duty, and just the general child rearing needs that pop up throughout the day.  And I have to be more methodical and organized on when I do which activity: what can I do while he is awake and what is better left until he goes down for his nap?  Since he isn't here, I am rather lost and feel a bit unorganized.  I have too much flexibility if that's possible.  

Did you notice the resounding theme there: abnormal, strange?  How many people with a chronic illness feel this way on a daily basis?  I know I have and actually still do at times.  For instance, in my last blog, I mentioned my issue of a partial blockage.  That was not the norm for me.  I had to deal with something that the majority of the world never has and never will have to deal with.  On a side note, I can report that I've eaten mushrooms, peanuts, and even salad (which I try to prepare in much smaller portions) and all items digested well.  I'm glad as these are all foods that I enjoy immensely.  I even took the time to make my own almond butter which tasted way better than the almond butter I bought from the grocery store!  The house smelled good for the rest of the evening as the almonds require roasting to release the oil in them which allows for the smooth texture after processing the almonds that you expect from any nut butter.  I recommend searching Pinterest for a recipe for yourself and trying it out!

With the blockage issue comes a diet change.  That can make one feel abnormal as most people don't need to pay much attention to what they consume (maybe they should but they don't need to).  Whereas, now, and before the blockage, I had to think about what I was eating and how.  I feel like that was even more so the case before my ileostomy.  There were so many foods to avoid as to try and keep the Crohn's symptoms at bay.  It was a matter that could make me angry and frustrated.  As a teenager, pizza is its own food group I'm fairly certain.  However, my teenage years didn't allow me to eat that.  Bad things would happen.  But those around me were still enjoying it.  

Active Crohn's led to frequent bathroom trips.  Wouldn't that make you feel abnormal?  I had a round-trip ticket to the bathroom.  I should have been able to earn frequent flier miles.  People normally don't have these issues unless they have a stomach virus.  I had what appeared to be a never-ending version of that.  

And now I have an ostomy bag.  I think I can count on one hand those that I know personally who've been affected by the experience of having an ostomy.  Most of my contact with those in a similar situation as myself is through online communication.  There are many of us out there, we're just spread all over the place.  Maybe others are like me: They are willing to share this part of their lives.  But it's not exactly like you go up to someone and say, "My name is_____, and I have an ileostomy."  And, typically, it's not visible under my clothing so unless by some chance the subject can be brought up, there are those I'm around on a semi-regular basis who have no idea that I have an ostomy.  Sometimes, that seems strange to me.  

Well, those are a few things that make or have made me feel like an odd duck.  But I know I'm not alone in that.  Even those I would view as normal have something that makes them feel abnormal.  Before my health issues, I always felt abnormal because I have naturally curly hair that as a young child, was a thorn in my side.  It still has its moments but nowadays, I'm thankful to have my hair and the uniqueness of it.  The gray hairs are starting to bug me though.  But one day, I'll embrace those, too (or alter it possibly).

  

I’ve Been Blocked

With an ileostomy, there have been times that the foods I've eaten during the day didn't digest quite as well as I would have liked.  There would be noticeable stomach discomfort, sometimes categorized as pain.  But I would go to bed and hope for the best.  I'd be uncomfortable until I finally fell asleep.  And the next morning I'd wake up as if nothing had ever bothered me the night before.

However, last Thursday, my experience was different.  I try to watch my carbohydrate consumption as I have Polycystic Ovarian Syndrome (PCOS).  This makes my risk of diabetes greater.  I enjoy eating almonds and uncooked produce like mushrooms and broccoli with hummus.  Normally these things don't bother me.  But Thursday, they did.  I ate a snack bar loaded with almonds.  A couple of hours later, I ate broccoli and mushrooms (in a larger quantity than I usually do) with the hummus.  And then a few hours later at supper, I had a small salad.  That's when the pain began.

Now, initially, I didn't give it much thought.  I just thought it was just discomfort and it'd pass.  The problem was, there was something inside of my small intestines that didn't want to pass.  Or rather it did, but couldn't.  As the evening wore on, the pain only worsened.  I had to go lay down trying to massage the area where my stoma is to help provide some relief.  My husband had to take care of our son for the rest of the evening on his own.   With his busy schedule, I was thankful he was available to do so.

I went on to bed in quite a bit of pain but just assumed that the next day would be better.  And it was as far as I was concerned.  I didn't feel 100%, but better than the agony of the night before.  I decided to keep my diet light (although maybe not light enough) and have a smoothie for breakfast, peanut butter sandwich for lunch, and chicken and sweet potato for supper.  I was still rather uncomfortable on Friday night.  And it was time for me to put on a new ostomy bag.  That's when I finally noticed how swollen my stoma was; golf ball size maybe.  Way larger than I can recall seeing it.  And the area around it was very sore.  I didn't think the new wafer would stay on through the night because of how swollen the stoma was and how watery my output had gotten by this point.

The next morning, I woke up still in one piece.  Feeling a little better pain wise, but emotionally I was a nervous wreck.  I was scared with the stoma being so swollen and the output still so thin.  And my weight had quickly dropped to the lowest I have seen it in quite some time.  I put a call in for the on-call doctor at my gastroenterology clinic to make sure that what I was doing was okay (consuming a mostly liquid diet and some low residue foods like crackers).  He thought that was fine.  He didn't think there was much else to be done besides a wait and see approach and repetitively said to go to the ER if things got worse.  He mentioned the possible return of Crohn's and maybe even an infection as the cause of my issues.  I thought that strange as I mentioned what I ate.  I still felt that was the cause, so with an expert mentioning the word Crohn's, that made me a little more nervous than I already was.

The next day, I added a little more food to my diet.  I made it okay.  The output started to get better.  The soreness around my stoma was still there and is still there even now, but very, very minimal.  Today, I can say the output is MY normal.  I have incorporated cooked produce back into my diet without issue.  But I have yet to try another salad, although I think I'm ready to.  And I'm ready to try fresh produce again.  I'm just going to make sure and CHEW thoroughly and watch my portion sizes.  The almonds and peanuts...yea, I don't know that those will be back in my diet so easily.  That snack bar is where I really feel like my problems were honestly.  I actually put some peanuts in my food processor and made my own peanut butter.  It was something I had been wanting to try.  And I liked the results although I'd imagine most people wouldn't as I didn't add any sweeteners to it.  Next, I want to try making my own almond butter. 

I've Got Questions. Who's Got Answers?

Since starting the blog, I've been following different groups and individuals speaking about IBD and ostomies through Facebook and Twitter.  With that, I'm able to see the questions that people have regarding their illness and the struggles they are facing.  The questions are asking of others what experiences they may have had with certain medications, what to expect from the various procedures and tests that those with IBD endure, and just what to expect from the journey of IBD in general.  People seem to have a mixture of fear and uncertainty as well as a curiosity with the situations they have found themselves in.  Ever since their initial diagnosis, their lives have been turned upside down.  Surprises have been thrown at them from every angle.

There are those individuals who are able to find relief from their symptoms by watching what they eat.  And there are those who can eat like they always have and seem to experience no issues.  My husband is the latter.  He has Ulcerative Colitis, and he eats today as he did before his diagnosis  If he experiences any issues from that, he hasn't mentioned it to me.  However, during my worst days for Crohn's Disease, I couldn't even drink water without being in pain and having to go to the bathroom  During those time when my symptoms weren't so animated, I ate a diet free of spicy and acidic foods and raw fruits and vegetables.  My Crohn's still flared.

My husband also has had success with medications as it seems that many others with IBD do as well.  He never had to take any steroids thank goodness.  I, on the other hand, had no success with any medications but prednisone.  And that was no long-term solution.

I've done well with my ileostomy.  (Minus the leaks like yesterday morning.)  Thankfully, my Crohn's hasn't spread elsewhere.  And no other issues arose.  But there are so many others out there who are still struggling.  It may not be so much the issue of IBD but maybe they now have other issues that stemmed from the issues that IBD caused. 

This is where support is needed.  And for the most part, the people they are around on a daily basis try to offer that support.  They mean well.  Suggestions of what to do to alleviate symptoms and to help with the illness overall are offered.  It's a "try this..." or "go on this diet because so-in-so has the same illness as you and the diet worked for them".  But, as I stated with my husband and myself, just because something works well for one, it doesn't necessarily work for others.  (Even though he has UC and I have Crohn's, I think this still applies.)  The value of family/friend support is great though and shouldn't be discounted.  They are the ones to go to appointments with their loved one, the one to be a listening ear when others aren't around, the one to take care of them.

The benefit of support from those with a similar illness is great in another way: that of experience.  At the time of diagnosis, I knew of one person that had the same illness as me.  That person struggled with it a lot.  There seemed to be a lot of unanswered questions for them just as I had at the time.  My doctor was able to connect me with others who could provide me with answers, with stories of their experiences, and even better, a light to guide me through the darkness that Crohn's formed for me.  I was able to ask point blank questions that only they could answer.  Questions like how they felt having Crohn's (and an ileostomy), how did it affect their relationships with others (like marriage), and what were the pros and cons to having an ileostomy.  A doctor could provide information on the whats and hows, but they couldn't provide the feelings, the emotions that someone who has been there can.  And with the support groups out there on the internet, you can find someone who has been in a similar situation.  Tips are traded, questions are answered, and you can be connected to even more people like you.  Check out The IBD and Ostomy Support Blogs and Crohn's and Ulcerative Colitis Support on Facebook for more IBD and ostomy-related blogs and support.  These people are ready to listen.

Past, Present, and Future

My son, he recently turned two years old.  That seems unreal to me.  Facebook has the memory posts that show up with your past posts.  There have been quite a few of those to pop up on my Facebook page recently.

Some of the posts were of pictures from when I was pregnant with my son, and some were from when he was born.  There were those first birthday pictures that remind me how much he has grown and changed in a year.  He's taller now of course, and he's not so pudgy as babies are.  His hair went from being short and straight to growing the most lustrous curls.  He got that feature from me except my curls don't quite have the wow factor.  His curls are way more beautiful.

Then there are those pictures of times in between.  Those particular pictures were moments where it was just me and him at home together.  I'd look at him and wonder what he would be like at six months, one year, two years.  What would his character be like? His attitude?  What would he be able to do physically that he isn't strong enough and coordinated enough to do now?  What would he have learned?  I've been doing that a lot since his recent birthday.  Now I wonder what he will be like at three, four, and five years old.
 It's hard to focus on the here and now.  I like to be prepared.  I'm not a fan of surprises or sudden change.  (And yet, I decided to be a parent.)

However, when I got sick with Crohn's Disease, all I could focus on was the here and now most of the time.  I was so sick, in so much pain, losing weight by the second it seemed, and unable to even drink a glass of water without it sending me to the bathroom, how could I get beyond that in my mind?  The pain I felt on a daily basis was like (and this is only a small, small, small-scale comparison) a paper cut in that once you get it, you realize how much you use fingers.  Suddenly, that small injury to your skin becomes a massive wound that keeps getting hit and burns fiercely with every hand washing.  And don't forget how awful hand sanitizer can make a cut feel.  Every action draws your attention to that little cut. 

Like I said, paper cut pain is small compared to what I felt in my intestines.  Initially, the pain was just there.  I didn't know to give in to it.  I didn't realize I could be sick with something more serious than strep throat.  But once all the tests were run and a diagnosis was given, I still didn't know the severity of what I was dealing with.  I was young, fourteen years old, and I didn't give much thought to my future as it was.  I was already just living in the moment as a teenager.  Being sick didn't change that thought process.

But being sick made it hard to think about the future which I needed to do as I would be graduating high school in a few years.  Instead, I was dealing with the repeated flare-ups of my illness.  I couldn't imagine life beyond pain, beyond being chained to my house and to the bathroom.  I feared the future if this was the life that awaited me.

I couldn't imagine what it would be like to have an ileostomy.  I wondered what it would be like of course, but I couldn't fathom the idea.  However, I was hopeful.  My desire was to not be sick anymore, to be set free from the bondage that Crohn's had put in me for six years.  Freedom is what it gave me.  Now I can look to the future as I feel that I now have one.  And I can continue to watch my son grow, wondering what he will be like.  I don't have to wonder what it will be like to have an ileostomy.  I've lived with one for over ten years now.  I just wonder at the joys and blessings that await.