Saturday, July 14, 2018

Advance to Go'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?

Wednesday, June 27, 2018

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. 

Saturday, June 9, 2018

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.

Sunday, May 27, 2018

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.  

Sunday, May 13, 2018

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.

Sunday, April 29, 2018

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).


Sunday, April 15, 2018

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.