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.

Blame It On the Peanuts

I've had a couple of frustrations to deal with the past couple of weeks.  One of these causes is why I haven't written a blog post during the past two weeks.

My laptop computer, which I've had for several years now, wouldn't start up past the initial screen.  It would flash the HP logo and go to a blank screen with a flashing cursor in the top left corner.

My husband ran diagnostic tests on it in an attempt to find out what was causing the computer to not to want to start up.  The results led us to buy a new battery for it.  Fortunately, the battery wasn't expensive because it didn't help.  The screen remained blank except for that flashing cursor.
More diagnostic tests were run, but those yielded no results.  My husband contacted his father who has immense knowledge of computers.  He walked us through a few things to try in an attempt to find out what was going on with the computer.  But the screen remained the same.  And we had no idea what the cause was. 

The frustration was not only the fact that this computer didn't work, but that it had files on it that we wanted to be able to access.  And we thought we had those backed up properly.  We didn't.  My father-in-law was able to get those files off of the laptop and onto my husbands.  That part of the frustration was resolved, and we now have the files backed up properly.  Currently, my father-in-law has the computer with him, attempting to diagnose the problem and maybe even bring the computer out of its comatose state.  Otherwise, we may be going computer shopping.  I don't mind sharing a computer with my husband, but it doesn't always work out well as he needs to use his computer quite often.

The other frustration I've had lately had to do with my ileostomy.  With that thing, it seems like all is going fine, and then...BAM!!  A leak occurs, and it's in the middle of a very sound sleep.  Suddenly, I wake up.  I was intending to roll over and go back to sleep.  But I had a nudge that said, "get up".  I did and walked into the bathroom. 

I have a habit, an ostomy habit if you will, where I look down at my ostomy appliance when I get up in the mornings I guess as a measure to make sure all is well.  Well, I didn't really have to look too hard this time.  My shirt was slightly soiled.  (Gross I know but that is one of the downsides of having an ileostomy I guess.)  I'd sprung a leak; at about 3am, too.  All I could say was "Oh, man!"  And wonder if I'd have to wake the hubby so we could change the bed sheets.  (Fortunately, somehow, it never got on the sheets.  I don't think he even knew I got out of bed.)

I gathered the supplies I needed to change my ostomy appliance.  The changing process goes fairly quickly now as compared to the beginning; even when I'm half asleep.  I get all cleaned up, changed my pajamas, and went back to bed.

The frustration here is obviously having to take care of the issue at such an early time of the morning when I could have been and should have been asleep.  And then, when I go back to bed, it's frustrating because I can't just fall back asleep like my husband can.  My brain turns on, and it won't shut back off.  I'm laying there trying to figure out why my ileostomy appliance leaked so I can avoid a reoccurrence. 

The other frustrating part of this was that I was going to change the ostomy appliance later that night.  3am is just too early to schedule something like that.  And it makes life easier if I can stick to the schedule.  But it didn't and there I was analyzing what I did to cause the leak.  Maybe it was not anything but coincidence.  However, I blamed it on the peanuts.  I ate some (maybe too many-I love peanuts) before bed.  At least I digested them okay as I felt fine, no pain.  For that, I can be thankful and feel a little less frustrated. 

Who's to Shame?

There is a level of shame that seems to come with parenting, with health matters, and with basically...life.  Anytime there's a decision to make, there are people in the background slapping you on the back for making a great decision.  But then there are those who are trying to knock you off your feet because they disagree with all you do. 

And then sometimes the shaming comes from yourself.  Like when our son gets sick.  I have a tendency to try and figure out why, how he got sick.  Could it have been because we didn't dress him warm enough?  Was he outside too long?  

 Another self-shaming experience is when I switched from breastfeeding my son to formula feeding him, I felt like a failure.  After reading the literature and information on breastfeeding, I believed it to be the best form of nourishment.  I still do.  Switching to formula made me feel guilty and weak.  I shamed myself.  No one said anything to make me feel that way.  I just based it on the fact that it's something that women have done for years (and continue to do) and therefore, I should be able to breastfeed my son.  However, as soon as my husband gave him his first bottle with formula in it, the weight of the struggle of breastfeeding quickly fell away as well as the guilt and shame.  His development hasn't been affected in the least.  

And yet another time I shame myself is when my ostomy bag leaks.  When this happens, it's disturbing.  I'm not expecting it.  And I try to analyze every detail such as the foods I ate before it leaked that might have caused issues, or maybe I didn't apply something properly when I changed it the last time.  I'm always trying to figure out what I did.  But in reality, it's not necessarily anything I did or didn't do.  Just like with my son getting sick.  These things just happen.  

What is painful though is when other people shame you.  Just recently, my husband received "a look" from an individual after our son decided that that particular day was not going to be his day to behave.  The "look" was one that seemed to say "Can you not control your child any better than that?"  We were experiencing our toddler's desire for self will in public.  We dealt with his outbursts as well as we knew how.  But this individual must not have agreed with how we were dealing with the situation.  I had to wonder if they had ever had to deal with children themselves to which one would quickly realize that these tiny beings have brains of their own, and they use them in ways that constantly have me in a state of wonder, positively and negatively.

And of course, people have their ideas of how other should take care of their own personal health needs.  Personally, I had people mention things that I should try.  Most ideas I take into consideration.  I can't say that I recall anyone shaming me for my decision to have surgery which gave me an ileostomy.  Although I'm sure there are those who don't agree.  But it was right for me.  It gave me my life back.  However, I have heard of situations where those with ileostomies are shamed for having them.  They are told that they are ugly.  They are told that wearing a bag of waste on their body is disgusting.  Or they are told that they should have tried other options instead of ostomy surgery.  Some of those with ostomies weren't given a choice because it was a matter of life or death.  Maybe they weren't given a choice as I was because, for whatever reason, they were incapacitated and woke up with an ostomy bag.  They are shamed over something they have no control over.

 And I'm sure that there are those who didn't agree with our participation in a fertility clinic.  But again, it was right for my husband and me.  That (and God) gave us our son.

Shame can come from your inner voice or the voices (or looks) of others.   But it should come from neither source.  Life happens, some things are out of your control.  Decisions then have to be made based on those events.  All I know to do is sincerely pray for God's guidance and to help get me through those life events.  Do what's best for you.       

In Reality...

I had this crazy idea, a new mom sort of mentality, that raising a baby would be near flawless.  I mean, I went through infertility treatments to get this child.  That means that all would be rainbows and sunshine when it came to childrearing.  Right?... those first few days when all my new mom eyes saw was the wonder of this child.  I didn't know life could be so blessed.  I was a mom.  To my son.  It's an amazing feeling.

Reality did set in though.  There's the special way to wrap up newborns to keep them snug and warm and feeling safe like they were in the womb.  The nurses could get him wrapped up like that.  And he'd stay like that until someone unwrapped him.  It seemed to be something he'd only comply with for those lovely ladies though.  If I or his father or anyone else wrapped him like that, getting him as snug as possible, in a few minutes he'd have an arm free, and then the other arm; without fail.  At home, we'd have him in a sleep sack, and he'd get his limbs out.  He'd be sleeping on his back, manage to get loose from his wrap, and jerk himself awake, and then awake mommy and daddy of course.  We tried propping him on his side to see if that would help.  (We were trying our best to comply with the advice that "back is best")  But being on his side didn't last.  He'd roll back on his back and jerk himself awake again.  Ultimately, we realized that he just wanted to sleep on his stomach.  He moved his head well, so I wasn't as concerned.  And the child stayed asleep for longer than thirty minutes.  We were thankful and prayerful that God would take care of him because even though I wasn't as concerned, I was still concerned enough to pray about it.  (For those that don't agree with this decision, let's just agree to disagree.)

Then, there was the whole breastfeeding thing.  I tried that.  Maybe I didn't give it enough of a try.  I lasted for maybe 3-4 days.  But I feel like we had latching issues.  Again, he seemed to do okay when the nurse was in the room to help me figure out what was going on.  But when they weren't there, and I used the techniques that showed me, it didn't go well.  I was hurting because he'd only take one side which in turn made me frustrated.  And then he probably felt my tension, and that didn't help us get anywhere.  Even pumping didn't seem to work for me.  My hormones were a mess which made me super emotional.  All of this combined with my lack of sleep made me break down.  I told my husband we had to start our son on formula.  I wasn't in a good place, and that wasn't good for me, my husband, our child, no one.  And I have to say, I felt a little sad that I couldn't do the motherly job of feeding him like my ancestors.  But the relief that swept over me when I handed my husband the baby bottle for the first time to feed our son was exactly what I needed.  A weight was lifted.

And changing diapers and clothes: that was the most awkward thing to do for my child.  I thought it would just come naturally.  But babies wiggle and move a lot.  And they are so small.  He seemed so fragile when it came to these tasks.  It took quite a bit of time to just change and wet diaper (no poo included).  Let's not forget how little boys can somehow manage to soak their clothes even though the diaper appears to be secure.  And if their clothes are dry before the diaper change, they may very well get wet during the diaper change, or maybe it's the unsuspecting parent who gets the shower.  We were fortunate on the latter part.  We tried to keep ourselves protected and tried to stay attentive during these times.  There were a lot of wet pajamas in the mornings though or wet clothes after nap time.  Eventually, we both got much quicker with the process of diaper and clothing changes.

The worst day for me was when my two-week-old son fell off the couch.  He was protected (or so I thought) by pillows that would keep him propped up and unable to roll off.  But those same skills he used to wiggle out of his snug blanket wraps and sleep sacks, they also worked on the couch.  I go into the kitchen and hear a thud coming from the living room, and it's like my gut just knew what happened.  The screams from his little lungs confirmed my gut.  I scooped him up and looked him over from head to toe to check for injuries, and then I proceeded to join him in crying.  I have him in my care for two weeks, and I let him fall off the couch!  I felt like I should have been branded with the words: "Worst Mother in the World."  What kind of mother was I?  A mother.  Normal.  We had an appointment with his pediatrician a few days later, and I mentioned the incident (maybe expecting some ridicule), but instead, she checks him over thoroughly and tells me about an incident she had with her own child.  And later, my gastroenterologist mentioned an incident with his child as well.  That made me feel much more accepting of the fact that I'm a mom, but I'm still human.  And when my son fell off the bed several months later (after he started crawling) while myself and his father are standing there with him, I felt awful again because it's one of those "really?" moments.  But I allowed myself some grace.  (After I found my baby to be okay and apologizing to him over and over and over...)

This post had nothing to do with my Crohn's Disease this time.  But maybe it will reach someone with Crohn's/IBD and/or an ileostomy or anyone who may be expecting a child.  Maybe it will bring a little humor to those who aren't expecting.  This is just some of the stuff I learned in just the first few days, weeks, and months of my son's life.