Category

Off My Chest

Sometimes life gets real. This is the place where I can share it with you.

You Don’t Get A Vote.

Just a little after class sitting in my garden. Like ya do.

So I had an experience this morning that served as a great reminder.

It was 7:45 AM. I just got done dropping kids off at school with all that goes into that. Got myself to school on time and was feeling great about that. Heading into class I received a solicitous comment of:
Wow! You really NEED makeup.
I was caught off guard.
What the what now?!
My reply: ‘You don’t get a vote.’ as I kept on walking.
I could have explained myself. But I shouldn’t have to. I could have educated her. But I didn’t have time nor was I in that mind space.
But it’s a great reminder and good reply to have in your holster. No one gets a vote about your appearance or the right to define what your best efforts look like. Period.
You know you’re trying your best. Your best, no matter what that looks like, is good enough. And no one else gets a vote.

Apparently this is the face worth commenting on.
*Taken just now in the garden as I typed this up for you.*

PS. Aging is natural and highly recommend.

Recap and Looking Forward

This is one of those catching you up, what the heck has Christy been up to sorts of posts.

Looking Back
I think of 2015 as the year of perseverance. It was a mix of really amazing opportunities, adventures of all sorts and some moments that were super challenging.

Bit of a Bump
2015 started out with a surgery to have my gallbladder removed by a new-to-me surgeon. Up until then I had been really spoiled with having one surgeon who did all my work for the last twenty- ish years. Thankfully my Gastro referred a very skilled person and all went well.

Got Awesome
Next came the 2015 #IBDSocialCircle. This was my first IBD conference where I would get to meet other advocates. I was super excited and didn’t know quite what to expect. I knew Sara Ringer would be there and that was it. I met the very nicest IBD Advocates, did my best to live tweet an IBD Social Circle Round Table, got a sneak peek at upcoming endeavors designed to improve the lives of patients and collaborate with fellow advocates during an all day meeting.  I was in Gastro Lady Heaven!

Got Exciting
As soon as I got home from the IBD Conference Where my Wildest IBD Dreams Came True – I dove head first into buying a house and moving.  I seriously put my luggage and IBD Conference swag into a box, taped it shut and kept going until June.

Challenging
So we have this house and are pretty excited to have a cozy little place just right for us where we could be Zen with our offspring.  We went in knowing there was some yard work and painting to do. And we were cool with that, as long as the house was sound. It would be a fun adventure. That notion lasted for about a minute before the peace and opportunity for transformation that was our house began to resemble that 1986 movie, Money Pit, with Tom Hanks and Shelley Long. Repairs – bugs- wilderness- rodents- pluming – broken major appliance- tenting and gassing, multiple roof issues, water damage, interior wall repairs and on. So far home ownership has been one adventure after another.

Secondary Disease
So I have Meniere’s Disease. It’s not fun. I did a post about it to give you an idea. About a month after we moved into our home, it decided to be really active. Meniere’s is quite ambushy and took some serious trial and error to figure out how to get some relief. I would like to tell you things are better. They just aren’t. I take sedating meds which somewhat calm down my ears before doing fun things and I keep food down because of sublingual anti nausea meds. Thanks to continuous tinnitus, I don’t have silence anymore. My hearing drops out for short periods of time in one and sometimes both ears frequently enough for me to mention it to you. It’s an ongoing process.

Crohn’s Disease
I see my Gastro on the regular, like ya do, and he reminds me it’s been a minute since we’ve done a pill cam. So I do that and it’s super amazing because the geek in me loves all that medical science working its way through. Plus it was one of the new systems that don’t use all the stickers but a large sensor plate worn belt style. (Future post about that) My pictures came out clean, my blood work came back lovely. The words ‘It looks like you are in REMISSION.’ were spoken. My Gastro brings up the idea of going off meds. And so that’s what we do. I am still amazed and really grateful about every bit of this last paragraph.

Busy
Otherwise known as ‘Mamas going back to school!’ With both kids stable and at their school during the day, it was time for me to go back and work on my education. I was super excited and optimistic that this time it would all work out. I was older, my health was more stable and with that pesky gall bladder out and an Ostomy on my team this go around, college was really going to happen for me. And it did. But the start wasn’t as smooth as I would have hoped. Those credits I managed to earn twenty years ago didn’t transfer. So I was starting over from scratch. At first I was pretty bummed but then I decided it would be okay. After all, I’m going back to gain skills to be an even better advocate. Psychology, public speaking, writing and more will help me be better at what I enjoy.  As long as I keep my goals up front, I can’t be bummed about that.

Recovery aka Holidays
Holidays marked the end of my first term back in school. I was proud to earn a solid B in Psychology, consistently work on home repairs with The Husband, and have time to relax with festive tree trimming and cookie making. Much needed time off with my wee family and Grandparents down for a visit was the perfect ending to a rollercoaster year.

Looking Forward to 2016
*First of all, I’ve got the hang of this college thing and I love it. My schedule works around my children’s time in class and I still keep my weekly volunteer time at their school. I’m taking classes that apply to my advocacy love and dream job which feels really good.

*Our hard work has paid off. The house is stable enough where we can divert some of our resources towards yard work – which I love.

*Back to Creating
With all that work going on there was limited time for fun stuff. It felt like we were always coming home to another thing to fix. Now it looks like the road is becoming more even. I’m getting back into the swing of being creative again. I’ve begun to crochet a little, write more and hopefully paint something that isn’t an interior wall.

Part of that goodness is that I’m back to sharing with you, but in a more rounded, balanced way. Sometimes I feel like I don’t have a lot of new IBD related things to say. But being a Crohn’s Disease patient and Ostomate, my everyday life is very relevant. There are things I do now I never dreamed I would ever be able to do when I was sick. And while I am well now, I know Crohn’s Disease could come back tomorrow and do its best to take all this goodness away. I am very aware of that.
And so to fit that intent I have a new page look which will continue to evolve. If you like it, thank my husband. He really listened to what I wanted and is making that happen in real life. He really is a sweetheart.

Thank you for reading and catching up on my 2015 recap. It’s amazing to look back on a year of change and learn from those experiences. I am eager to see what 2016 has in store.

The After Burn

*Disclaimer:  Adult content and language.*

I think perhaps sometimes I share too much of the good.  Always push forward.  Always look for the light and fight your way there.  Fake it until you make it is something I have been doing since I was a pre teen.  As a person with Crohn’s Disease I find strength and comfort living in a way that negatively impacts my family, especially my children, as little as possible.  I feel powerful when I am able to make my life look effortless to everyone else.

parentingUnfortunately, my positive sharing has led others to believe my experience has been the Holy Grail of easy.  Well guess what, sometimes I go through things I don’t fully understand at the time.  Sometimes it takes a while to process my junk before I feel like sharing.  And sometimes my junk is so heavy and ugly that sharing feels like an unfair burden to put out into the world.

However, today I wanted to share with you about pain.  Not the normal pain ER docs see as drug seeking.  Or chronic pain we live with to the point where we’re really never sure where we fit on the 1 to 10 pain scale.  I’m talking about what happens when pain goes sideways and becomes something else entirely.

So I have my Permanent Ostomy Surgery  and everything goes swimmingly.  I’ve written about that before. (It’s really long)  Just days after procedure I’m home, home schooling my daughter, and loving on my wee son.  Life was on track.  I was walking around normal and physically better than expected, but a part of me was emotionally numb.  It was like stepping into a life that wasn’t mine.  Everyone else was the same but I no longer fit.  I felt foreign in my own life.  Impostor.  At the time I attributed it to this huge change I had undergone.  I gave myself slack and forgiveness for the learning curve I was going through.  I was being very understanding towards myself.  But still, I felt like I got off too easy.  I was getting away with something.

Being pain free after all those years, and surviving a near death overdose in the hospital was like finally being allowed to remove your hand from the flame.  It’s that immediate, jarring, lack of sensation.  I had been living pain for so long that its absence felt foreign and far too quiet.  I wasn’t giving myself constant pep talks of ‘breathe through it, it will pass, push through, you can do it’, because I didn’t need to.  In an odd way my inner compass felt too still.  I felt far too vacant inside without the pain I had grown accustomed to.  I didn’t know I had made friends with agony until it was no longer there.

Logically I knew that everything was the way it was supposed to be.  Still, I felt on guard and uneasy.  I realized I had never really been able to rest.  As in sit in a place, pain free, and really enjoy my surroundings.  And sleep.  God!  Sleep on a level I had not experienced in years.  I could actually sleep and wake rested.  But the peace and rest I craved so much at first felt unexpected.  I would wake up and be surprised at the length of time I had been out.  Defensive and wary.  Are you sure?  That many HOURS?!  It was an odd mix of disorienting lost time and surprise that I was actually able to do it.  I could sleep through the night.  And at the time that didn’t feel right at all.  This sleeping, pain free, resting thing.  I had been away from it for too long.

And if that wasn’t screwy enough, one day I was changing my gear, felt the sting of the Ostomy paste with its rush of pain…. and warmth.  Comfort.  Which was disorienting in that it was a magical mix of hurt like crazy and strangely soothing.  It was dizzying euphoria and fear.  Which threw me.  What the Hell was that?!!  I was the stranger looking back in the mirror, wild eyed and confused.  For a moment the hollow feeling was gone.  Oh Shit!  This is NOT right.

Much to my horror and curiosity I was bent by pain in a way I did not understand.  Pain felt good.  Really Good.  Like that loose body feeling after a massage.  I was no longer waiting for Crohn’s pain to come to endure against.  It was there in another form, and it had missed me.  And I felt Right for a moment because this is what I had needed and didn’t even know it.  The combination of this mis matched pair of experiences was unsettling.  It’s not supposed to work like this. I felt like a monster.  Well Shit!

It wasn’t physical health at all.  Physically I was doing better than my highest expectations.  Instead it was a slippery little thing that snuck in between the cracks and ambushed me when I least expected.  I didn’t know what this was called.  I had never heard of it before and I sure as hell wasn’t going to tell anyone about it.

painFrom danger to peace with no transition.  Emotionally like being forcefully thrown from the top of a building to the city below.  It wasn’t a purposeful choice; I was overtaken by it.  And incredibly ashamed for that weakness.

In my life I have been physically hurt in many ways.  Never was it comforting.  This new development freaked my frick out.  My job in life until then was to battle against pain, not secretly acknowledge it as relief.

I knew no way to help myself but to keep going.  In the opposite direction.  I poured myself into my life.  I overemphasized the things I knew in my mind were normal and good.  I focused on my family and parented the hell out of my children.  It felt like I was apologizing all the time.  I stayed away from pain and hated myself when it itched against the back of my brain.  It was a hard crawl.  I felt like an ass.  I felt betrayed by my own body again.  Was I a pain junkie?  Is that even a thing?  I was Pissed at Crohn’s Disease.  Again!  Haven’t I been through enough already?

I was so proud of myself all those years for shouldering the Crohn’s Disease pain largely unmanaged.  My doctors gave confirmations which bolstered my right thinking.  I told myself I was doing a great self service by avoiding stronger meds so at surgery time I had more pain management options.  I equated pain endured to accomplishments.  Even more so if, on the surface, I made it appear effortless to those around me.  In reality, the way I endured Crohn’s Disease pain turned into a trap.

As of today, years later, I have healed to the point where I still hazard an educated guess when it comes to the 1 to 10 pain scale.  Which has always been normal for me.  I am friends with pain in that I tolerate it quite well, but no longer miss it.  I used to miss it.  I feel appropriate levels of discomfort when injured.  I no longer feel like a monster, but do still carry a shade of regret and shame.  Regret that I know exactly how pain can twist and whisper soothing things to you, and if it happened then, will it happen again?

Painting Rainbows on Jagged Glass

You know what, I’ve been in a lot of pain lately.  Don’t get me wrong; I’m a pro at remaining calm and carrying on.  But wow it’s been difficult.  Someone noticed I wasn’t feeling well today and that was hard.  I thought I was doing a much better job of playing normal. Darn, darn, darn!

Pain, fatigue, lack of sleep, achy joints, clammy sweating during the night to wake up cold and in need of an insulating layer of beach towel as I’m too tired to change the bed and guilt and shame over the idea of waking my comfortably sleeping husband over repeated restlessness. I will close my eyes, I will shut down, I will open my eyes again with that sense of having having never rested. Whatever restoration I take in those moments is my fuel for the day. I walk around feeling like a wrung out rag with a job to do.

I get winded doing the simplest things. Breaking down processes to make them more achievable such as folding laundry, making dinner, even getting ready in the mornings is the only way to get them done. Y’all just need to calm down and be patient or help me out. Mommy needs a break for a minute.

It’s hard to balance what to share, how to share in a situation that is still evolving, and tell the truth without bringing you (or myself) down. A big part of my success at carrying on is minimizing my experience and pushing off that gravity. Move forward always. Coping by painting rainbows on jagged glass is my specialty. I’m simply trying to walk carefully through this rough patch without getting cut.

My liver levels are off. I have pain that kicks and stabs from within. I have difficulty keeping down food. I am jaundiced and really hoping no one else will notice. I am worried for my family. I’ve been this sick before and I hate that I’m here again. I’ve got a bucket of anxiety and it’s overflowing.

Of course someone could tell my normal was a big ol’ act put on for everyone else. My heart wasn’t in it.

PS.
All of you out there not feeling so great but killing it anyway totally Rock!

Concussion

Photo credit: Advanced Vision Therapy Center.
Concussion.  Photo credit: Advanced Vision Therapy Center.

 

My life hasn’t been quite the same for a while. Things I took for granted have been changed and I find myself re-acclimating to what I hope will not be a new normal.

A couple weeks ago I went shopping with my children. An accident occurred in the store causing a large metal shelf to crash down against my head, its weight knocked me down and pinned me to the floor. The impact of both the concrete floor and the shelf left me with a concussion. A CAT scan later confirmed Post Concussive Syndrome. This includes brain fog, numbness in my face, twitching right eyelid, pain in my head, ear and neck, constant headache which turns to migraine, light sensitivity, forgetfulness, difficulty in sleeping -as laying down causes the sensation of intense head pressure, and more.

Some symptoms are improving. I no longer have sparks of light in my eyes when I move my head. My neck pain is much better as long as I sit properly. I can feel the skin on my face, although now it’s a sensation of pin pricks, like when your leg falls to sleep. Things are slowly getting better.

Who would have thought IBD and ostomy would take a health back seat to anything?  Right now those are my easy health issues. This has changed how I have interacted with my family, friends and you. I apologize for my distance.

I am still here. Just working harder to be that way.

With one week until school starts for both my children, I am focusing on them. I’m working to make the last of their summer break a fun one.

This fluke accident has forced me to slow down, do things differently and really enjoy each moment with those I love.

As always,
The best of health and happiness to you.

Embrace Your Not So SUPER Powers

I’m not gonna lie.  I’ve got a lot of great things going for me.  I’m nice, I can clean up gross stuff without barfing (I picked up a dead bird for a realtor friend just this afternoon) and I can talk to just about anyone.  Another great thing is I am pretty realistic about my abilities.  And try as I might, I will always have to work harder for certain things than others.  I am so awful that if we were in opposite land they would be thought of as SUPER Powers!  Every day blunders I have learned to love and embrace about myself which I think of as my Not So Super Powers!!

Embrace your Not So SUPER Powers.  Woosh!
Embrace your Not So SUPER Powers. Woosh!

Because I have a few, and upon reflection will likely discover more, I will share with you my Special Powers so even if your day is in the crapper, you know I’m right there with you.  We can chug along together.

*I’m pretty certain I’m not the only one with skills like mine.*

And so today I will share with you ~The Hug Gone Wrong.

I went in to see my super cool Gastro for a routine checkup.  He is intelligent, a great communicator and really dedicated to his patients.  And he’s not just a bowel guy.  He watches liver function, blood levels and overall health.  It’s a whole body approach to wellness that I really appreciate.  He works to ensure all his gastro folks are in the best possible shape to live their happiest lives.  So I consider him a friend.  Not the kind you have lunch with and see often.  More like the kind you are always happy to see when you run into one another.

I like going to see him when I am well because I work hard for my health, and in a way want him to be just as happy about my good status as I am.  I really want to be his easy patient.  On the flip side, I’ve had some exciting and somewhat mysterious blood work that had to be addressed.  In him I have confidence that whatever the issues are, it can be resolved.  And so, naturally, when I see my Gastro I go in for a hug.  (This last visit was a ‘Hey World, I’m healthy! and I didn’t get lost on the way to the Gastro office for a change!’ Woo Hoo!)  *Getting lost is one of my super powers that I will share about later*  And because I was so showey offey to the world, Karma came and got me.  Instead of a brief, friendly hug I promptly chinned my doc right in the face!
Oh No! #Embarrassment.KillMeNow!
Mortified, mortified, mortified!!!

With apologies and getting right to business of looking at recent improved blood results and perhaps the need for further approaches to ensure best care, the appointment continued on.  I grew slightly less mortified.

With confirmations of good health, refill of effective medications, request for more blood work to check levels again and the mandatory belly poke; the doctoring aspect of the appointment was winding down.  I catch my Gastro up on what I’ve been into lately and I like to hear which seminar, walk, run or ride for bowel health he has been up to.  (For me, I have to be half dead to NOT want to learn more about current studies, medications, and efforts to improve the life of people with bowel issues.  Me NOT asking would be a huge red flag.)

On the way out I gave a super careful hug and a promise to follow up with blood tests.  In my mind I figured it probably should be my last as Bologna hugs are dangerous to my Gastro professionals health.  Because mortification was still sticking its tongue out at me and Karma was laughing its butt off I was all distracted and forgot my updated prescription.  GAH!

The lovely Gastro staff mailed it to me.  Whew!

*sigh*

That’s what I get for being too jazzed about life.  Walking on sunshine is great until you fall off…and chin someone in the face on the way down.

All in the life of me I suppose.

20140809 024b
No matter what your Not So SUPER Powers are, just keep chugging. It helps to laugh at yourself regularly.

The 5 Most Beautiful

5 beauty

I was tagged to participate in a photo challenge by one of my friends. The idea was to pick five photos in which you feel beautiful. This was the result. These people, regardless of whether they are my husband, sisters or friends are all loved like family. These people love and support me just as I am. I could add more photos, but then it wouldn’t be the five most beautiful anymore, but more of a happy life collage. (And really, I should do a proper blog post about this subject).

Unfortunately so many IBDers are not supported by their biological and or married-into families. I am here to say you can still have a family outside of all that and be happy. It’s the idea of a chosen or created family or when friends become family. Consciously making the choice to surround yourself in positive, loving and supportive individuals that then serve in the place of parents, grandparents, sisters, aunts, uncles, cousins and the like.

I am most beautiful when surrounded by these people who love me as I am. And if you need that too, I wish you an amazing chosen family who love you exactly as you are. You deserve it.

Free Fall

Super Sam!
Super Sam!

Part of my life has gone on hold while the rest seems to zoom by at lightning speed.  I feel like the pilot of a hot air balloon whose fire went out.  That free falling sense of gravity pulling down.  Slow motion; I see the earth approaching as I do my best to rapidly make preparations so my family sustains the impact with the least damage possible.  We will all be hurt.  We can’t escape.  One of us will not make it.  I know it’s happening.  I can’t stop it.  And so I prepare.

Our very senior family dog Sam is nearing her end.  We have a diagnosis and are keeping her life as calm and as comfortable as possible.  As the mom I look back on her labrador life and marvel at how quickly thirteen years passed by.  Sam was our child before we had children.

As the runt of the litter she had health issues as a wee pup.  We spent lots of time with the vet and making home made food for her to gain good health again.  In time Sam grew to be a lovable 50 pound black companion.  She went through all the stages that normal dogs go through.  When Sam was young she was sweet and fuzzy with sharp baby teeth and bright eyes following us around everywhere we went.   Everything was exciting and new.  Sam loved to explore it all.   As cute as she was, Sam also had her naughty moments.  Like that period of time where she was a jerk and ate all my fancy lingerie.  We were embarrassed for her.  Just shamelessly stuck her muzzle right through the side of the laundry basket and fished them out to munch on.  We freaked because of her earlier digestive problems.  I was so worried she would die on Victoria Secret overload!  Lots of vet visits during that phase of her life for sure.  We were so grateful when she gave up her panty addiction.

Weekend trips to the fields to chase after decoys and the fun of dog training.  Off fishing with Ben and his brothers, camping and chasing balls, sticks and disks.  Her life was laid back.  Then came children.

Ben and I welcomed our daughter after nine years of marriage.  We read all the books and wanted to make sure Sam and our child would get on.  Ben went home early with our daughters newborn infant stocking hat so Sam could get familiarized with baby smells.  The meeting was careful and tentative.  I was holding our baby while sitting on the couch as Ben brought Sam into the room.  Ben had a hold of her collar as they approached.  Sam stood as far away as possible and carefully leaned all the way forward to sniff our baby up and down.  She then came closer and got an even better sniff as she began to wag her tail.  From then on Sam was our childs first dog.  Our little girl crawled for the first time from her place on the rug to Sam a few yards away. She would sit up playing with toys on a mat with Sam beside her dozing.  When our daughter got older she would dress up and include our dog in on the fun.

When we adopted our son, Sam had this whole ‘being a friend to little kids’ thing down.  We introduced our son just as carefully as we did with our daughter.  Sam got right in there with snuffling and wagging.  Everything was going to be just fine.
But this child needed Sam for a very different job.  While our daughter loves on Sam and tries to teach her tricks, gives her treats and brushes her hair and reads to her, our son needs Sam to be stability.  Sam is very calming for our boy.  Even now that her health is failing.  He would lay with/on her and pet her.  It didn’t matter that my lil guy didn’t always have words.  Sam would be still and sometimes lay right back on him.  The weight of her arm, steady breathing and something magical about Sam calms our son right down.  She is the doggy Autism whisperer.  Routine things that people take for granted were made easier by the calming force of this black miracle worker.  Bed time, bath time, toileting, brushing teeth, getting dressed, quiet times and more were somehow easier in her presence.  He needs Sam.

Sam has laryngeal paralysis.  This causes her difficulty in breathing.  Heat, exercise or general excitement exacerbates the symptoms causing Sam to struggle even harder for air. She has a constant strangulated, raspy breathing sound that increases from anything such as getting excited when Ben comes home to watching me cook dinner hoping for a bite.

Over spring break on a particularly lovely afternoon the children and I were getting set to give Sam a bath.  With a brush for each child and me petting her and directing fair distribution of fur to be quaffed, my eldest began to brush as my youngest caught sight of his dump truck and abandoned scheduled fun times for the land of pebbles and mighty machines.  All smiles turned into Sam on her back wanting her tummy rubbed.  She began to get excited and stood back up.  Her raspy breathing increased as she began to foam.  Her eyes bulged out and it looked as though she were trying to hide or get away.  Frantic.  She looked scared with her hunching over for each breath with tail down and desperate for help.  Her gums and tongue turned a greyish purple.  The sound and sight was horrifying.  I had my daughter run into the house to find the largest towel she could and get it wet with cool water.  I needed her to have a job that would take time and keep her busy while feeling like she was helping.  I pulled Sam onto the grass where she would be more comfortable and tried to get her to lie down.  She wasn’t having it (and I don’t blame her).  I thought we were going to lose her.  Just then my son noticed what was going on and came over to pet and tell her it’s okay.  With Sam as disoriented, scared and stressed as she was I was worried she may bite out of confusion.  I sent my son off to get Sams toy.  There I was with my dog gasping with all her might to breathe and there was nothing more I could do for her.

And here is where I did something I feel both justified and guilty for.  I felt panicked and desperate and heartbroken.  We were going to get through this, Damn it!  We were going to remain calm and we are going to fight!  But this is my girl and it looks like she is dying.  She is gulping for air and it’s doing no good.  She is scared.  Really scared.  My efforts to get her to calm down so she can please, God, breathe! is not working.  So I prayed really hard for God to please let Sam live so she would not die in front of my children.  Not like this.  I did not want this to be their last memory of her.  Please let her make it so she can go in her sleep or at least while the kids are at school.  Let’s not injure their little phyches by watching their dog die such a horrid suffocation of a death.  So I sat with Sam for a long time.  Just petting her and calming her.  With a soggy wet towel from my little girl draped over her, Sam recovered to the point where she could go to her bed where she slept off and on for the rest of the day.  The entire ordeal wore her out.

Then it came time to explain to my children.  GAH!  I am so aware of trying to say the right thing.  What is age appropriate while still telling the truth?  How can I tell the truth and not give false hope?  How do I explain to my boy in a way he understands?  So I sat on the carpet with my children and had a talk.  I did my best and left it open for any questions that come up.

In the following days I have done my homework and called the vet about ending life care.  I called traveling vets for euthanasia care in our home, cremation care and all those options that I never knew existed.  I want to be prepared in the event that Sam is suffering and not making that same recovery she did last time.

Our home has become as zen as I can make it.  Sam sleeps pretty much all day on her fancy orthopedic bed and gets up to find a sunny spot from time to time.  We are feeding her doggie cookies and giving gentle pets.  Lots of hugs and I love yous.

As a mother I had begun to wean our son off of being so dependent on Sam when we initially got the diagnosis.  I was thinking ahead, hoping for the best, but preparing for the worst – and I am glad for it.  He still needs her but can operate independently.  So if Sam is laying out on the paddock, he will take his legos out there.  He has become more flexible.

So the goal of today and every day is to make Sam as comfortable as possible.  The gravity of this free fall is heavy on my shoulders.  As the stay at home parent I am with her more than the other family members.  My husband works and my children go to school.  I am always checking on her, ensuring she is breathing, checking her food and water bowls to make sure she is sustaining herself.  At this point I have decided I don’t give a flying fig and give her people food and doggie cookies all the time.  I am not worried about heart health or doggy obesity when I am just trying to get her to live to Easter.  I have told myself that I can be better about her dying after Easter.  I am totally lying to myself about that and I am okay with it.  It’s what I need to do to get through.  The balloon is falling faster and I am bracing for impact.  It’s okay to lie for a little bit and say it won’t hurt.

And the Holidays Begin

In our family the beginning and end of holiday season is punctuated with birthdays.  It is a mad dash between October and January to get everything done.  Living in a colder climate, all this busyness was a great distraction from the rain.  Motivation to get up in the morning to spite the cold.  “I’ve got things to do!”  Now that we live in a warmer part of the world (I wore a tank top to walk my littles to school this morning) the holiday season is signaled by the changing of front lawn décor.  Down are the black cats and Jack O’ Lanterns and up are the beginnings of Christmas decorations.  When leaves don’t really change and the weather is a steady balmy; decorating to change the sameness is the way to go.  

October for us is birthday party, classroom craft volunteer, Halloween classroom party caterer and fall festival volunteer.  Toss in several crocheted minion hats and a Dracula cape…..you get the picture.    Busy, exciting, fun.



Halloween Festival 

Now that we are well into November things calm down a bit just in time for Veterans Day.

We had an amazing Veterans Day weekend.  *A little Bologna family history: Seventeen years ago my sweet husband asked me to be his wife on Veterans Day in a little sushi restaurant.  The same restaurant where we had our first date which happened to be the first time either of us had ever tried sushi. Daring, adventurous, fun, delightful.  I’ll spare you the details – but marrying my best guy friend was an easy ‘Yes’.  We immediately told family then made apple pie together.  A super way to celebrate if I do say so myself.  
No matter what we do, no matter where we are, Veterans Day is always a happy day.  

This year Ben’s family flew in for a visit.  These people are massively in love with our children; affirming, funny and inspirational to us. They are solid great people.  Time with Grandparents like these is always a good thing.  

View from the deck of the Midway

Right after the Grandparents arrived we toured the Midway which is amazing and huge.  You can easily spend all day experiencing everything.  Wear comfortable shoes, take the tour and fill your brain full of history and tradition.  If you have any questions, no worries, there are plenty of veterans who volunteer and would love to give a perspective beyond the general presentation.  In these people lies a wealth of knowledge and humor.  History comes alive when they speak it.  Very transformative.  Plus they love kids.  My children passed the Midway test and were sworn in as USS Midway Museum Junior Pilots.  I left having gained a whole new understanding of our history and the people who lived it.  

The next day we went to the Birch Aquarium.  Still another place a family could easily spend the entire day.  There are areas for kids to explore and learn about ocean currents, how power is produced, sea life and ocean health.  Everyone enjoyed the tide pool area where people could touch the sea animals.  The paddock that looked out onto the beach was lovely.  There was a dive team show that is beamed over to the local children’s hospital where the audience can ask questions and observe feeding patterns of various species of fish.  Throughout there was a conservation message and reminder of individual responsibility to keep our waterways clean and healthy. Examples such as a side by side comparison of how very similar jellyfish and garbage bags appear in the oceans current had a strong impact.  (I’m not a fish but even I thought it was pretty darned close.) To top it all off there were baby seahorses!  

Because we had worn ourselves out and needed down time we spent the third day playing board games, going on an easy paced walk with our very old dog, drawing pictures and playing in the back yard.  To round out the evening we fired up our new BBQ and watched two really good movies.  

Monday, Veterans Day itself was the day our family headed back home.  Because time with Grandparents was short, we chatted over a leisurely brunch then headed to La Jolla Shores.  It was ideal because of the playground, benches and plenty of people watching.  No need to get sandy an hour before hopping on the plane.  I also like this beach because it was the location of the CCFA Take Steps walk earlier in the year.  It was nice to see the area Au Natural.

Take Steps San Diego 2013
Many people, one voice.  Taking Steps and Being Heard.
But the topping on our Veterans Day goodness, besides hanging out with family I had not seen in four months, was talking to my Grandpa.  We did not talk about his time in service, his words on the subject are few, but we did talk about everyday life.  How is he doing?  Is he happy?  Enjoying his activities? What is he concerned about?  This may seem like an ordinary chat with ones Grandpa.  But for me, it is special.  Every conversation with my Grandpa is important.  Because he is so very extraordinarily important to me.  Speaking to my Grandpa, saying ‘I love you’ and to hear his special reply is the sweetest Veterans Day celebration of all.  

So, my sweet Bolognas that is what I have been up to.  I wish you well every day and hope for healthy, happy and fulfilling lives for you.  
Every time I do something cool, I hope you are as well.  Every time I conquer something challenging, I try to do it in a way that would make you proud.  
And don’t forget to say something nice to your Gastroenterologist.  S/he’s got your back…end. 


Oregon Trip~ Her Perspective

Yay!  A WEDDING!!  I LOVE weddings.  This one is even better because after 66 years of bachelorhood, Bens adoptive Dad found the perfect lady to spend the rest of his life with.  Together they are great parents to us and adoring grandparents for our children.  Perfection.  Time to Celebrate! 

We have an airplane to catch and week of fun to prepare for.  As the wife and mom, my job is to plan, prepare and pack.

The first thing we did was create an itinerary for every day (including packing day and the day we arrive back home) to ensure everything gets done and no time is wasted.  That involves contacting friends and family well in advance to let them know you are coming to match times available in order to maximize visits and include everyone. 

I planned outfits for the family according to the day’s activities, placed each outfit in a gallon zip bag and labeled each one.  This made packing simple and helped guard against the dreaded over packing that can happen when traveling with kiddos.  Each day just look for the zip bag with the corresponding label and voila! Success. 

I had a dress to find.  I wanted to compliment Ben’s groomsman suit and avoid clashing with the wedding colors.  I was down to the wire on finding this dress and getting nervous.  As time passed, desperation began to set in.   I mentally reprimanded myself for not having thought to purchase a dress with matching shoes, under things, and shimmer all at once before now.  From now on (watch out wallet) when I find a perfect gown, I’m getting accessories at the same time!  My goal was to look put together, age appropriate, and lovely.  I accomplished this with a plum colored banded dress with lace high capped sleeves that flattered my form, was easy to move in, and disguised my appliance.  The end result was quite fetching.  Victory!

When it came to packing for my Ostomy needs, it required examining what I actually use and then doubling that in case of emergency, separated bags, or digestive hurricane.  I brought a small gear kit in my back pack that was kept with me all the time.  The rest traveled in our larger carry on that was stored in the overhead compartment.   None of my Ostomy supplies went into checked baggage.  For me, it wasn’t worth the risk. 

Items in the small kit were:
~Permanent marker
~4 paper towels folded up
~One pair of long handled, short blade Ostomy scissors
~One 2oz tube of wafer paste
~One 1oz bottle of stoma powder
~One Stomaplex Equalizer (But I used to just have an extra TP tube)
~One roll of disposal bags (the kind you use for doggy poo pick up ~or~  in the baby isle for wrapping up poo diapers)
~ Two wafers.  One pre cut and one not
~Two Ostomy bags
~Tiny baggie of water based wet wipes
~1oz bottle of Purell

In the back pack to compliment my Ostomy cache I kept extra zip bags for emergency emptying in park or other ‘no restroom’ situations. (More about those later in a different post.)  These came in handy and are a staple for my purse or backpack all the time.  Their uses are limitless.

In my back pack I also kept daily medications and digestive aids such as Gas-X and an anti diarrheal.  Rich foods, going out all the time, hectic schedule, and lack of sleep can lead to digestive mutiny.  It’s always best to be prepared.  Both Ben and I were super grateful that we were. 

So, itinerary is done, bags are packed, car seats ready to be loaded.  We arrive at the airport early and in style thanks to our friend Marco.  Thank you Marco J

On to the TSA!  Transportation Security Administration to be exact.  And that SECURITY part is taken very seriously.  As an Ostomate I figured the body scanner would likely see my gear.  I dressed in flip flops, jeans, and a light top.  Comfort and easy shoe removal was on my mind.  I also wanted to be able to have my bag easily accessible in case there was an issue.  I had previously seen the body scanner on the news, so I had an idea of how it worked.  It appears to be able to detect anything under clothing.  So I figured this would be a quick sail through.  The scanner would see that I am an Ostomate, backwards hand check to confirm that yes, indeed I am an Ostomate and not the next plane bomber, and I would be on my way.  In my mind that is how it was going to happen at least. 

In Reality Land I went through the scanner, hands above my head.  There was a,”Mam, step forward please.” As the woman manning the scanner calls another person to take her place.  I tell the TSA employee that I am an Ostomate.  Then begins the back and forth of
TSA: ‘What?’
CB: ’I am an Ostomate.’
TSA: ‘What?’
CB: ‘I have an Ostomy.’
TSA: ‘What is that?’
CB: ‘It is a bag on my abdomen for collecting stool.  I am an Ileostomate.’  I lift my shirt to show her for clarification.  At this point gathering that perhaps not too many Ostomates have been through this port, or perhaps Things That Can be Attached to Peoples Bodies and are A-OKAY is not yet part of TSA training curriculum.
TSA: Her eyes dart down to my bag then back up at me.  ‘Follow me please.’

 I straighten my top and follow the TSA employee as she leads me to an open area where another TSA employee waits next to what looks like an ATM machine with a tricked out treadmill attached to the side.  I glance back and see my back pack and Ostomy kit is being searched as well.  By now more TSAers have joined in and we all stand around as I explain that I am an Ostomate and exactly what that is.  I feel like I am speaking another language.  They all may as well have question marks stamped on their foreheads. I lift my shirt again and hike it up high so they get a good look.  Now they understand…somewhat.  There is mention of calling ‘medical’ to come down.  In my mind I am thinking, ‘Are you kidding me?!!  I am clearly NOT sick!’  So there I stood, inwardly proud of myself for changing gear the night before, just as someone in a car crash is grateful for clean underpants.  The one in charge of the groovy ATM/Treadmill steps forward and sweetly explains that they are going to have to do a test.   No shoes, shirt up, gear and abdomen for all to see, I was asked to run my hands over my bag, then without touching anything else, put palms out to her so an explosives test could be completed.  A wand with what looked like a round felt pad at the end was wiped over my hands in a grid fashion as to not miss a thing.  The pad was then put into a slot in the ATM/Treadmill.  Thirty seconds later a readout on the machine said ‘Low Risk’.  At that point they told me I was free to go. I thanked them and wished those TSA gals a good day and was off with my family in no time.

 
As I tell it to you, it sounds like the search took a long time.  But it didn’t. No one made me show my gear, I offered that up for clarification and to speed my way through the line.  Just think how much time and how freaked out my kids (who were standing right there and watched the whole thing) would have been if I had to go to the efforts of bustling off to a private room.  Excuse me, but I prefer we search me where everyone can see what you’re after.  And P.S., let me help you along, if I can, to show you I have nothing to hide.

For me, I see my Ostomy bag much like underpants.  We all have them, sometimes underpants show and sometimes you have to be okay with willingly showing them to make a point.  My point was to get to my destination on time.  In the end, there was a dash of education thrown in along the way.  Hopefully the Ostomates that go through TSA after me have an easier time as I am sure those TSA gals will remember what an Ostomate is. 

Anyhoo, the plane ride was pretty peaceful as Ben sat with the kids on this leg of the flight.  Taking turns with kids in cramped spaces is yet another reason why we are a super awesome, married people, parenting team! 

Then began a week of what I am calling JOYCATION!  Every hour of every day was planned out for maximum fun.  We visited friends, family; I got to love on my twin sister, and even got to meet a few newborn family members.  We attended a parade, celebrated our sixteenth wedding anniversary, went out dancing, watched a UFC match, swash buckled through pirate laser tag, bucket fun at Applebee’s, play dates for the kids, splash pads in the sun, enjoying pretty cupcakes made by pretty people, fondue night, and of course a wedding celebration that spanned two and a half days.  An exemplary toast was given by Ben to his Dad and new Mother that made grown men cry.  (It was that good you guys) We even moved to the groove in a thrilling flash mob for the newly wed bride and groom.  After, everyone danced like nobody was watching all night long, loved on each other, and celebrated.  It was a celebration of each other, of the couple, of family, and our community.  Every single living family member attended from all over the globe.  Generations came together for the single purpose of love, gratitude, welcoming, and acceptance.  The entire week was joy in motion.

The trip home began with a second jaunt through the TSA.  This time I knew what to expect.  I asked to skip the body scanner.  The request to go through the standard search, with the explanation that I am an Ileostomate and they were going to have me do the inspection anyway was met with inflexibility.

 *inward sigh*

I was ushered through the scanner to be unnecessarily zapped again.  Predictably the gentleman called a woman TSAer to come and take me aside.  I was placed in a position where I could see the screen she was looking at.  She pointed to the highlighted area and explained that this was what alerted me for further questioning.  This TSAer was treating me like I was a reasonable person, not a human red flag of danger.  I told her I was an Ostomate.  Her expression was one of understanding.  I was happy to see she knew what I was talking about.  Eureka!  YES!  In my mind I am thinking, ‘This one is going to be WAY easier.’  She leads me to a different version of the ATM/Treadmill I had encountered before. 

Off to the side I can see my Ostomy kit is being searched.  TSA guy asks Ben about my kit.  Ben confirms it is his wife’s kit.  TSA guy asks to look inside.  Ben gives permission.  TSA guy then unzipped my kit, opened it up, ran his finger inside to get a good glance, pronounces it ‘good’, and my items are clear to go.  I am buoyed again with gratefulness as this time it was a simple glance inside versus the pawing from the previous airport. 

I turn my full attention back to TSA lady.  It is just she and I versus the gaggle of people at the other airport.  I explain again that I am an Ostomate.  I lift my shirt to do the hand wipe, explosives test ATM thing again. As we wait for the machine to do its job, TSA lady comments that she knows what an Ostomy is, but then followed up about how the Ostomate she knew would let their bag fill up and get all gross before emptying and other unsavory observations.  (Ewww!) I found her attempts to connect by associating me with being unhygienic sad and had a moment of education with her.  I assured her that was NOT the norm in any way.  As the read out gives me the ‘all clear’, TSA lady compliments me by saying, I carry it well, she would never guess I was an Ostomate.  In my mind I appreciated her efforts to connect and be friendly as I thanked her and joined my family.

I was grateful to be done, that it was a quick search, that this TSAer knew what an Ostomy was, that the gentleman TSAer who searched my kit didn’t linger in what I consider private.  (Not even Ben gets into my kit). I am grateful that I was treated kindly, shown on the screen what they were going after, that it was just one TSA lady versus the zoo exhibit feeling from the previous port.  This search took even less time than the previous port, and I never lost sight of my children. 

The TSA wasn’t that bad.  They did their best in a situation they clearly did not understand.  I believe I was helpful with my forthright and positive demeanor.  They got me in and out as quickly as they could within their guidelines.    

On the plane ride home it was my turn to sit next to our kids in a cramped space.  My time was used to remind the littlest to NOT kick the seat in front of him, refereeing the sharing of our Kindle Fire (P.S. I LOVE our Kindle Fire beyond reason), managing water and healthy snacks, and ushering wee ones to exotic airplane potties.  I admired Ben leisurely typing away on his computer, fully at peace as his two companions were either sleeping or staring out the window the whole way home. 

Lucky guy. 

Lucky wife. 

Happy family. 
 
Fabulous JOYCATION!

Family Vacation ~ A Spouses Perspective.

We have been on a family vacation which I am calling JOYCATION 2013!  We participated in the wedding of a life time for my husbands father, all the while celebrating, visiting with, and enveloping ourselves in family.  We played with friends, marinaded ourselves in love and fun, and filled every part of every day (and every evening) with joy.  Hence the title JOYCATION 2013!

This will be a post from a ‘His’ and ‘Hers’ perspective.  I found Ben’s contribution enlightening.  His observations and the way he describes events is telling of the kind of man and husband he is.  Protective, thoughtful, kind, insightful.  A gentleman.

Another day, another flight.  I once again find myself on a somewhat uneventful plane ride.  This time, I am making the trek between Portland and San Diego at 9:00 at night.  I am not alone.  My two wonderful children are sitting across the aisle while my beautiful wife plays referee.  Our roles are reversed from our fight from San Diego to Portland, so I find myself with some mundane free-time, sporadically interrupted by my Daddy voice saying, “Listen to your mom!”

My two seat companions on my left are asleep.  One doesn’t speak English, and I assume he will have an awesome time at the San Diego Zoo with his college aged buddies.  The other is a nice older lady who konked out not five minutes after the plane was in the air.

So… what to talk about.  Perhaps a quick review of the difficulties I noticed my wife endured during our trip to Oregon would be an appropriate topic.  She deals with them very well, so this article may be a bit abbreviated.  Heck!  It is a relatively short flight, so brevity is a requirement!

We came out here for a wedding.  I have a somewhat unique relationship with my non-bio father.  He started out as my football coach during my sophomore year in high school, and has evolved to fill the rolls of friend, mentor, and father for me.  He was getting married for the first time, and I was to be one of two groomsmen.  We decided to stay for a week so my children could have as much time possible with old playgroup friends, extended family, and devote time to the wedding.  This necessitated a variety of wardrobe, tactical, and medicinal issues my wife had to tackle.

So, the stage is set.  Let me take you on an adventure as we fly alongside a beautiful Pacific sunset.

Packing for a wedding is fairly easy for a guy.  We wear a suit, jacket, and comfortable shoes.  My wife had a little more difficulty.  She had to find a dress that complimented her awesome figure, yet detracted from the ostomy gear.  It isn’t that it seemed difficult to purchase the ‘right dress’, but the ‘right dress’ had to match my clothes as a groomsman.  She went through several dresses, on many different shopping trips.  The sleek ones were difficult to camouflage her gear.  The billowy ones were too frumpy.  The reserved ones were, well, too dang reserved for a wife with her lithe body.  She ended up finding a nice purple number that had these descending decorations around the stomach and waist.  This gorgeous dress allowed her to move with freedom, while accentuating her natural curves, and obfuscating her gear.  Quite simply, she looked beautiful.  So if you are worried about finding ‘the right dress’ for an event, I believe it can be done very successfully.  Gear or no gear.

Another issue was the TSA.  A lot of gear goes into a trip.  And it is gear you do NOT want to put in checked baggage.  If the airline loses that gear, you will find yourself in a world of hurt.  So we worried and fretted about how the San Diego and Portland TSA would react to the assorted accessories required to perform proper gear changes.  Also, the dreaded ‘pat down’ itself is concerning from a time and personal comfort standpoint.

The last time we traveled, my boy was eighteen months old.  He was in my wife’s arms when she was told she had to be searched.  And since SHE was being searched, HE would need to be searched.  Now my boy can be a little terrorist at times, but not in any literal sense.  As I didn’t want my boy or my girl to be patted down because they were with my wife, I elected to have them both accompany me.  It was probably a vain move as they were old enough to be their own people.  But I was being my overprotective self.

Christy did indeed need to get patted down.  In San Diego, I was directed through the metal detectors because I was negotiating the direction of the children.  Christy was directed into the body scanner.  And, of course, as the supervision x-rays shot through her cells, they noticed she had something ‘odd’ under her clothing.  At this point she was taken to a room to be patted down or have her gear inspected, or something.  I will let Christy tell you about this experience, as I have no knowledge of what it felt like to have that happen.  All I know was her saying it ‘Wasn’t that bad’.

Jumping ahead in the trip, on the way to tonight’s return flight home, Christy didn’t want to go through the full-body scanner.  I BELIEVE you can elect not to go into the thing, but they rushed her into the darn thing, and I don’t believe they let her know that she COULD elect not to go through the thing.  Heck, she was going to get a pat down anyways, why not skip the additional radiation?  From a husband’s perspective, I wish I could have been next to her to assist.  I have flown a lot more than her at this point, and can provide a bit of direction in these situations.  But I was busy herding our children through the TSA hoops and troops.  Sorry Christy, I wish I could have done more.

Drink cart time!  Of the six airlines I have flown on, I have to say I like Alaska Airlines’ complimentary “Crunch Snack Mix” the best.  It must be the soy nuts or pretzel twists.  Somehow this complimentary combination complements itself very well.

So the next challenge I recognize as an issue for an ostomate, for my wife, is the need for bathroom breaks.  We were out and about, eating strange and rich foods, and we had to make sure a bathroom was within easy reach.  This is a lesson I have learned a long time ago, but for those spouses-of-ostomates out there, please, PLEASE immediately find a bathroom if your significant other says they need to use the restroom.  On trips like these, you may feel a time pressure, or stress, or some overarching obligation requiring you to hurry to your next destination.  After all, it is only a half-hour to forty-five minutes away!  She can wait that long…right?

No!  Find a restroom.  It could be that your partner has already been waiting for a while to tell you of their need.  Or it could be that ‘quick trip’ is going to hit a traffic jam.  Just do yourselves a favor and find a restroom promptly and efficiently.

The final issue I noticed was the food.  Diet changes are hard on everyone.  The greasy fare from fast food restaurants, the rich food from the wedding, and the over-processed food from the complimentary breakfasts create something of a perfect storm of indigestion.  Don’t get me wrong, I love a nice Carl’s Jr. Hamburger, and the wedding roast was fricking awesome.  But the dietary change for my wife, and for me, cause things to move a bit …. differently.  So when you are traveling, come prepared for things moving too fast or moving too slow.  Bring along some anti-diuretics.  Bring some Tums!  Or some anti-nausea meds!  Take care of yourself digestively.

So that’s about it for preparation.  Christy will be able to provide you a more complete list.  I’m just the dude on the outside looking in.  But to review…
·        TSA, annoying, but not intolerable
·        Formal dresses for female ostomates is very doable
·        Pack extra gear
·        Pack digestive aids

As we still have a bit of time left in this flight prior to our descent into San Diego, I would like to summarize a few more things about my wife.  Her preparation and execution of this trip was phenomenal.  I would be surprised if she didn’t have a detailed plan for more than a half-hour block of spare time during this entire trip.  Her preparation for herself and the kids, along with the detailed schedule, was amazing.

But what blew me away the most was the wedding reception.  This reception began at 5:00 and ran to midnight.  Christy spent most of that time in her beautiful purple dress dancing like a crazy woman.  And she was by far the best looking lady on that floor.  Every time we attend one of these wild shin-digs, I experience a profound reaffirmation of our love.  She is a wonderful woman, a snazzy dresser, and a very energetic and beautiful person.  Inside and out.

Thank you for sharing this flight to San Diego with me you Crohnie Bologna lovers.  If you have any requests for specific topics from me, please let Christyknow.  I’m not bashful, and will write about just about anything as I find time.  It is only finding time that is of an issue for me.


All the best.  Be well.  And keep on dancing like a crazy person!

Today Is Bobby Flays Birthday!!

 


No matter how sick I got or how long I was on IV with no food, I would always watch Food Network and Bobby Flay. 
I remember staying up super late (because who really sleeps in a hospital anyway) watching Bobby Flays Throw down and many of his other grilling, cooking shows.  I would curl around the heated towel and plan out what meal I would eat when I got better.  Because, darn it!  I WAS going to get better!!  Watching Bobby at work was a way of experiencing hope.  I forgot about my situation and enjoyed food competitions, tasted burgers, zesty sides and traveled as he toured the country attempting to win against locals making their best dishes.  Vicarious health.    

Bobby, Giada, Rachael, Mario, Emeril, Masaharu, Jamie, Paula and others inspired the food creations I attempt to this day.

Happy Birthday Bobby Flay.  You nourished a hungry girls spirit, hope and determination to thrive.

The Jump Off

I took off my purple today – all but my awareness ear rings- and put on my Ask Me About My OSTOMY t-shirt as I went to pick up my daughter from school. 

When I wear my ‘Ask Me’ gear I stand a little taller and try to look a little more approachable in my efforts to be a good IBD Ambassador.  The general public has no idea it is IBD Awareness week.  And that is the whole point.  That unknowing is, in part, preventing a cure.  Hopefully I will get to be the person who opens their eyes for the first time.  I don’t know what will make them uncomfortable or what their taboo level is.  Certainly Poo is at the top of most peoples’ list.  So I go slowly and gauge their reaction to guide the words I use to educate.

After collecting my girl child; I headed for the jump rope club.  On the way I noticed a Grandpa checking out my shirt.  He came up to me pointing at the clever logo and laughed saying he loved it.  I smiled and asked, “So you know what an Ostomy is?”
“No, but I like your shirt.”
“An Ostomy is the result of a life saving surgery, and I have one.”
“Oh really?”

From there we talked about Irritable Bowel Disease, that some days we have to try harder than others, he asked if that was like Diverticulitis, what exactly an Ostomy is, his surprise at my age and apparent level of health and vigor.  He delicately asked if I can still be ‘amorous’ and I confirmed that our marriage is sound as the British Pound.  I was relieved he did not think IBD was diarrhea.  Then I asked him to please remember my happiness if any of his family or friends ever has to think about getting an Ostomy one day.  He stated that I would be hard to forget.

After that he challenged me to a jump off next week.  I told him he better practice or be a good sport about losing.  Then he winked at me and left.

What a wonderful way to wrap up my IBD Awareness Week.  I hope I was able to educate with positive energy.  I wanted for him to see that I am just fine and so is anyone else with IBD.

 

Let’s Talk About Sex

*Disclaimer!  I am writing this article with a specific audience in mind.  If you are healthy enough for sex then I am talking to you.  If you have just been cleared by your surgeon and you are a brand new Ostomate wondering how to jump back in then I am talking to you. If you are the partner of an Ostomate, this may be helpful for you.  If you had a longer than expected hiatus from sex and are wondering how someone else made it through something somewhat similar to you then this is for you.  If you are looking at Ostomy surgery in your future and were wondering how the transition back to sex might work after then this is for you. For that matter if you are an adult in general interested in sex I am talking to you.
Who I am NOT speaking to:  Minors.  Yep, that’s pretty much it.  This article is NOT for kids.*  
There is a myth out there that Ostomates are not sexy.  There are misconceptions about whether Ostomates even have sex.  Surely it can’t be any good, what with ‘that bag’ in the way?
In truth couples are proving this myth wrong every day.  We have energetic, passionate, rowdy, tender, flirtatious, spontaneous, tangled up, sweaty, naked, and amazing, keep the lights on and give him a good show married people fun. 
I have been married for nearly fifteen years to my dearest husband Ben.  He is funny, charming, smart, and my friend.  We have been through a lot together and make a great team.  Because of all his nifty traits, (and his lovely melty brown eyes), I trust him and don’t have to hide anything from him.  This makes for wicked awesome sex!  That’s right folks, I am his Goddess.  Bearing in mind that I have not been keeping tabs on other peoples love lives; I would consider us normal.

After surgery to become a permanent Ostomate there was a transition period.  I was learning to meld with my gear, reacclimate to being pain free, and figuring out my new activity level.  By the time I got the ‘all clear’ from my surgeon, I was ready to regain my goddess status.  But we had a few obstacles to overcome before things could get back to normal. 

The most important was body image and self confidence.  I feel sexy so I AM sexy.  Just one of those life facts that I figured out early on, and still stand by today.  I am sure if I went into hiding and pouted about my Ostomy or Crohn’s Disease I wouldn’t be cute at all.  Not even to myself—so I didn’t.  But that does not mean there wasn’t a journey.  I needed to be proactive and find a way to make this new thing work.

Because my husband is my friend I felt natural being naked with him.  But starting out I did not see my Ostomy as part of me; I was still transitioning (melding) with my Ostomy.  It was awkward to go from flat tummy to what I felt was a bulky bag.  This stoma/bag combo was a rude interloper messing up my hard work.  I was grateful for it, after all it saved my life, but did not think it was sexy.  At the time I was using the clear full length bag where you can see all your output.  Useful for a new Ostomate in regards to learning about stoma size change and output patterns, but it’s not going to have your husband panting after you by any means. 
I was concerned with being able to rock the Ostomy and be as sexy as I felt inside.  I was worried that my poo-phobic husband would not find me amazing anymore.  I was afraid that instead of passion I would get pity, disgust, or even worse- rejection.  I discovered with only small changes to my lingerie I could hide the clear bag and have fun.  But that wasn’t enough.   I hated the sense that I was hiding any part of myself and it made me cringe to think that this was the trend I was setting so early into my new Ostomy life. 
I discovered opaque bags.  And even better, I discovered the drainable small opaque bags.  Now I am hooked.  They are skin colored, tiny and perfect for my needs.  Now I could feel totally naked with my husband and not worry about Ostomy gear getting snagged in and amongst all the sexy high jinks.  It has been the perfect fit ever since.
My sweet husband had an Ostomy journey of his own to traverse.  He was stressed out in his own way and recovering from the surgery like I was.  On one hand he was grateful to have me healthy, happy and pain free. But on the other there was a real sense of loss. 
For him the Ostomy was like his wife had lost a body part.  He saw me as permanently handicapped.  No more washboard stomach and flat ‘safe area’ for him to run his hands freely over.  Instead it was replaced by a new, mysterious, and dangerous area that may cause harm if touched wrong.  He was afraid to touch my bag for fear of injuring my stoma, irritating my skin and making a wound or pulling it off during the fun.
In the first two months there was cautious reluctance on his part when it came to any physical contact beyond a gentle hug.  I could feel his efforts to be extra gentle.  I watched the expressions run across his face as his hands lightly surveyed my body.  Ben was afraid to ‘break me’.  He had been witness to what Crohn’s Disease could do and had seen me at my worst.  That was stressful on him and made a lasting impact.  So, of course he could not feel comfortable having sex with me until he was sure that I would be okay.  I was eager to get back to our active sex life but did not push him; knowing he was still working things out.  At first he was very aware of my every reaction and took special care to go slowly.  I went out of my way to show with my actions that I was more than healthy and enthusiastic.  Once he realized I was just fine, he became more comfortable.  
It was an adjustment and a definite change.  Ben welcomed my new lingerie with eager acceptance and warmed slowly to the small opaque bags.  He is still very careful about my stomach and sweetly accepts my wish to dash into the bathroom to ‘freshen up’ aka. empty my bag and sometimes switch to a small swim size bag as an addition to foreplay.  This does take some of the spontaneity out of our sex life but it is easily compensated for with a little preparation.  I often return moments later to lit candles and fluffed pillows, so I count the ‘distraction’ as a positive one.  It is not that there is no spontaneity, it has just changed.  Ben now notices when I’ve just left the bathroom and makes out with me in the hallway in effect skipping that whole ‘freshening up’ phase and getting straight to lighting each other up. 
At this point Ben has come to terms with my surgery.  It doesn’t matter if I am in a small or regular size bag, lingerie or in the buff.  Whatever I feel most sexy in is how he loves me.     
Sex is more than the in and out grinding off of one another.  It is the confirmation of our covenant expressed physically.  When a couple has sex they are feeding their relationship, nurturing each other and connecting in a spiritual way that infuses their souls.  I comfort, console, empower, and confirm him as my one and only.  Why wouldn’t I want to do that every chance I got?  The act of sex is quite claiming.  I belong to him and he belongs to me.  This fact goes beyond the presence of an Ostomy. 
For this past Lent we celebrated by putting our marriage first.  We chose to have sex every day as a gift to ourselves.  It was about giving up all those things that make you too tired, too busy, and too irritated.  Our lives are busy, so we had to carve out time and prioritize each other.  We were sweeter, made out more, and reveled in our happiness.  It was about strengthening our marriage.  Personally, I was celebrating my life and my health and the ability to participate fully in it.  It was the most glorious forty days ever!  I would highly suggest sex as a perfect way to celebrate any season of the year.
Some tips that might help
*Switch to small opaque bags for sexy times.
*If you feel timid or have a partner who is, wade in with lingerie then lean towards going without once you or your partner gets more comfortable.

*Don’t hide in the dark.  You are alive, lovely and healthy enough to have sex.  Be proud of your good stuff and celebrate that with your partner.

*Be patient with yourself and your partner.  Cut, altered, sensitive, and mute nerve endings in the perineal area –especially if you have had a proctolectomy- change sensations.
 

*Be willing to try different positions.
  Work together to learn what feels best for you.  Try things like being on top so you have better control, plenty of water based lubrication and creativity.  If something doesn’t work, don’t give up.  Just try something else.  You are only limited by your imagination and flexibility.
 
*Don’t be afraid to talk with your partner and nicely guide him to what works best.  Trust me- he wants to rock your world.  He can’t do that if you don’t help him out. 

*Practice makes perfect.   Keep trying until it is just right….then do it again!


 Happy love life everybody.