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.