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.

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.