What is Crohn’s Disease?  How does it work?  How do you live with it?  I cover these topics and expand into my daily life.  Join me on my day-to-day adventures!

Pain, Fatigue, Flare

Haven’t posted for a minute. I’ve been having a bit of a flare. Fatigue is a relentless thing. Pain is more than usual with bursts of time where I get that ‘Oh dear, this is not good’ feeling. The one that starts with a central ache that blossoms into a burning that reaches through your body; tentacles with spikes on the end. Radiating to my back, upward and out to my very edges. Anchoring and squeezing in. I can feel it gripping, settling for the long stay. Something so silly as standing in line to buy zip food storage bags I later realised we didn’t need. Grey and washed out, cold sweat, panic and dread. This is breaking into my every day boring things. I behaved like nothing’s wrong for the strangers at the store and my kids who are old enough to be mortified.

The sinking feeling when I remember how long it took to be rid of this pain before. I toughed it out without pain help and became bent inside. Pain became normal and warm and comfortable. The before times, before I was broken, when pain was really pain, suffering seen clearly by my minds eye, it took years of uncontrolled agony to become broken. I wonder if I can do it again. Pain unmanaged is the current fad the well impose upon the ill. Once I got my mind right-ish about pain I promised myself I would never suffer for the title of good, compliant patient. But its been a difficult, tentative relationship that I like to play off as resolved.

I keep behaving as though I’ve recovered from the last Urgent Care turned ER stay. I am concerned. I’ve lived in uncomfortable remission. Waiting for the other shoe to drop. Enjoying not having to take Crohn’s meds, trying to savor the health I feel like hoarding, if only I could.

I’m due to see my GI. I want to go. I don’t want to go. It’s complicated.

And so I’m kind to myself. I treated myself to a long overdue hair cut. Talking to my hairdresser about the book she’s reading and the sewing class she’s taking was refreshing and lovely. I’m re evaluating my life. Assessing what I’m doing to make sure my long term goals are on track. Decluttering to reduce stress. Staying invested in advocacy by learning new ways to share.


As an IBD person I go in for check ups with my gastroenterologist every 6 months. Part of that includes a periodic inside peek at my digestive tract to make sure everything is going well. Originally Gastro and I were hoping for a capsule endoscopy (pillcam) which I have used in the past with success. When insurance denied the request we turned to ileoscopy to meet our goals.

Ileoscopy is a procedure where a thin tube called an endoscope enters through the stoma to view the bowel. Smaller than the diameter of most adult fingers, the endoscope is equipped with light, a camera, video camera, the ability to add air and water and tools to take a sample, if needed.

Thanks to the fact that I’m an ileostomate, scope prep was pretty easy and is the same I would have done for the pillcam. No food the day before, just clear liquid until midnight and nothing until after the scope.

Procedure day I got there early. If someone cancels, sliding into the open place is a perk I don’t want to miss out on.

Sedation – Now this is where my experience may differ from others. I prefer to be scoped unsedated. I like being able to participate in the scoping experience by shifting or moving if needed to get the best view possible. I like the ability to ask questions and get answers in real time from the number one expert in the room. Because I am involved and aware I understand the thought process of samples taken as my gastro is really good at explaining as we go, and we both look forward to follow up from the lab. For me, unsedated is worth any discomfort experienced.
*I have had sedated scopes. I simply prefer not to if at all possible.*

Because I’ve been having scopes and cams for ages now, I figured I’d go over a few pros and cons that might be helpful to know so you can plan for a successful time.

Pro Pillcam It’s really stinking cool. Requires no sedation. Depending on the type used it takes two to four images per second as it travels. All that information is streamed to your gastro office where they can review the pictures and get a result back to you as soon as the following day. (Depending on availability in your gastro office) The least invasive way to have a look at your insides.

Con Pillcam Go in early to swallow pill cam. You then leave to walk around with a device strapped to your stomach looking a little too much like a suspicious character for decent people. (The nurse will gently remind you to stay away from libraries and courthouses to avoid ending up on the evening news.) Follow eating and drinking directions throughout the day as you wait on motility to work its magic. Once the pillcam is out you then drive all the way back to the clinic to turn the crime scene esque equipment back in. It’s an all day waiting game. If you’re driving a distance to get to your GI, this can be a huge detractor. (One of the reasons why I really dislike it.) It exhausts an entire day. Things I do to help myself out: Walk around. Exhaustively. Get those bowels moving to pass the pill camera along as rapidly as possible. In my experience, pillcam day is not for taking in a movie, it’s a day for speed walking.

*You’ll want to discuss with your doc any possibility of narrowing or obstruction that could make passing the pill difficult.*

Pro Scope If you recover quickly from sedation, you could leave with an understanding of how things went. If you are a non sedation person, you have on the spot knowledge and can drive yourself to the next task of your day without delay. In and out then on your way. In addition, a scope allows you to take samples and manipulate tissue at the time of viewing. A bonus if you’re like me and don’t want to make a separate appointment for scoping on another day for results you want right away. I’m eager like that.

Con Scope
If you prefer sedation:
You will need to arrange for a driver to wait for you and take you home.
Depending on how quickly you recover, you may need someone to stay with you for a bit after going home.
Wait for discussion on findings with GI until follow up appointment or phone call meeting.
Gas. Air is used to make it easier to see. Once you’re done that gas makes its way out. This can be uncomfortable for some.

If you prefer non sedation:
Squeamishness about your body functions, bowels and the process it takes to look at them is not helpful for success. You must be okay with the idea and participate in the process of someone sticking a tube in your bum or stoma and looking around.
Gas. See above.

Bowel prep required. Ileostomates generally have a bit easier time than those with more parts. Follow the prep your doc prescribes, no food and lots of fluids until it’s time for nothing orally and you’re hopefully clear and ready to go. No cheating. Your doc can see if there’s residue and you’ll have to re test.

At the end of the day the scope went well. When you think about it, it really wasn’t a big deal at all. I am grateful to have a doctor on my team that shares the mindset of prevention first. Because Crohn’s Disease is a shifty little devil, you can have active inflammation even when you’re otherwise feeling fine. We approach Crohn’s Disease with the mindset of stamping out a campfire versus trying to save a forest engulfed in flames; prevention over recovery. A very important distinction that uses tools like regular check ups, pill cams, scopes and lab work to endeavor to keep the IBD flame extinguished and me feeling as healthy as possible.

I made a little video to give you an idea of how it went. Watch it if you like.


Janssen #BioExperience Tour

Recently I was lucky enough to be invited to attend a #BioExperience hosted by Janssen Biotech. It was a day of touring the facilities where Remicade is made and an opportunity to speak to the people who develop, create and produce this complex product.

Bright and early we headed on over to the Janssen R & D Spring House Campus, where research and discovery happens. It’s a large stone facility with three flags proudly flying out front. From there we were welcomed to a conference room where the presentation began.  No pictures were taken beyond the room out of respect and privacy for the scientific process and the people who work there.

^^I felt like Charlie going into the Chocolate Factory! So much science ahead. My inner nerd was jumping for joy.

And so our insider’s view into the complexities involved in developing biologic therapies used by millions of patients began. We learned about immunogenicity and interchangeability.  We discussed the steps taken to ensure consistent product and why pharmacovigilance plays an important role. Biologics, biosimilars, new ways of including people into studies that were once excluded, microbiomes and the varied ways genes play a role and the connections Janssen is making in that arena. Janssens’ focus on precision medicine with an emphasis on interception, prevention and cure as the goal. The word cure was actually used and the thought of what that would look like was spelled out. Advocates were asking questions, getting answers, and asking more. We were gathering information, confirming then clarifying, all taking in as much as possible.

^^Dr. Plevy answering questions. We seriously got to ask anything we wanted.
Table meeting image thanks to Tonic_BioExperience. Used with permission.

Next we went on a walking tour to view some of the equipment used in research and development.
Labs right there in front of us with nothing but glass walls as separation. Beside, a whiteboard with hand written positive notes. Literal and figurative messages of hope surrounded us as we viewed scientists growing the field of knowledge before our eyes. I couldn’t help but to be inspired. I wanted to participate, give a sample right there and help by making sure these minds had the materials needed to succeed.

I know science takes time. You have to think about it in the scope of decades versus year by year. But this is happening now. It was a privilege to get a glimpse. It was like peering through a nursery glass at the hope and promise of a newborn.  Instead, it was all my aspirations for a really good treatment and eventually a cure, lined up in an orderly row on a laboratory counter top. I could envision a future where IBD is understood and treated more effectively from the very start.

Our next stop was the Janssen Manufacturing Malvern Campus. We met in a conference room for an informative discussion about the physical process of product formulation and manufacturing. This is where bulk batches are made from cell cultures, ensured of purity and prepared to package for use.

One way the medication is kept contaminate free is the process of gowning. Gowning is a multi step procedure that every employee performs to protect the product that is being made. Because let’s face it, we’re all a bunch of mammals with hair and skin and sneezes. We want to keep all of that out of the treatment that patients will recieve. It is every employees’ priority to keep the medicine pure for patient safety.

^^So let’s go over the steps. First off, what you don’t see is the special shoes worn only in the area where meds are made. Regular shoes are shown here. Next comes a blue jump suit that goes over the foundation layer of scrubs and zips up to the neck. Then rubber gloves, booties over those special shoes, eye goggles and a head net are worn.

Next comes long slip on booties that go up to the knees and fasten with sets of straps to ensure they stay in place.


^^Then comes more gloves. By now we’re thinking he is pretty covered. But nope, there’s more.
Next come more feet covers with more ties to keep them in place, a head covering that goes right over the eyebrows and down past the shoulders. After that, a face mask is applied.

^^But that’s not all. Next comes a long white lab coat that snaps from the neck all the way down to half-calf length. Then comes a set of sleeve coverings that go up past the elbows. Finally, another pair of gloves completes the transformation.

Because we were an inquisitive bunch, we asked further questions about this process that you may want
to know:
*The whole procedure is to protect the medication from contamination.
*Employees are checked regularly to ensure they are up to date on safety (including gowning) protocol.
*Employees who are ill stay home. No working sick. (I wish everyone did that.)
*Also, there’s very little talking in the work area. The employees are singularly focused on making sure the product is made without distraction.
*The employees work in 12 hour shifts, much like nurses and other medical professionals.
*Between lunch, breaks and restroom trips, the average employee gowns 6 times per shift.
*The medication never stops process. To ensure continual availability, the lab stays in production 24 hours a day, 7 days a week.
* It takes 90 days from start to finish to complete a batch of Remicade.

Phones and cameras mindfully stowed, we left the conference room to kickoff our tour of the lab areas where growth medium begins and the purification testing process takes place. Dressed in lab coats and goggles we were welcomed into what I lovingly think of as Remicades’ kitchen – But way cooler.  As we walked through a series of rooms filled with shelves and tables laden with equipment, each step was revealed.  The scientists were excited to show us the techniques they use every day. Their enthusiasm was infectious as the process came to life through their examples and narration.

We ended with a video tour that showed aspects of manufacture regular people should probably not be invited to walk through. I appreciated throughout how respectful everyone involved was in regards to each other, the process, the equipment and the medication itself. So an interactive video that walked us through from a first person perspective was more than perfect for the last piece of our visit.

From there we wrapped up our tour with a quick meeting where we got to ask follow up questions and the extended offer to answer any questions we wished to pose in the future.

The day flew by in a swirl of information and discovery. Before I knew it the #BioExperience tour was over. It was educational, hopeful and inspiring. I went in knowing about the topic of biologics but was impressed at the level of thoughtfulness and dedication it takes to make it all come to life. I had moments where I began to imagine a different future for IBD patients. What will this disease-scape look like for my children and how will what we are learning now contribute to that? I was inspired to go home and learn more about what I heard. Several of the topics touched on aspects of conversations I’ve had with my health team and those closest to me. This #BioExperience was perfect fuel for further education. The fact that I got to attend with amazing health advocates was icing on the cake.

1. Janssen Biotech paid for my transportation and accommodations. However, all statements and observations are my own.

2. The image of everyone at the big meeting table was from Tonic_BioExperience. I stated above in caption and in watermark on the image itself and now here. Giving credit is important.

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.

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.

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.

Ringing in the Summer

So I’ve been a bit a lot distant. And you haven’t heard very much from me. Truth is it’s been crickets over here all summer while I’ve been quite busy managing unexpected health Blarg!

It’s no secret I have Crohn’s Disease, an Ostomy and I’ve even mentioned my Asthma. But then there’s that other health thing I balance and pretty much never talk about. In part because it’s been relatively stable and because it’s not fully IBD or Ostomy related. To get straight to the point, I have Meniere’s Disease. (Like I really need another thing. Right?) I’ve been diagnosed for about five years but have dealt with symptoms since my mid twenties. Up until recently it’s been a thing that’s kept me off boats, festival rides and makes me woozy on airplanes, elevators, bridges, docks and most buildings two floors and higher. Every so often the tinnitus would act up or I’d get dizzy easier than normal. But it was manageable and largely not a big deal. The Meniere’s diet is a low sodium one which is opposite of Ileostomy diet. So I figured they balance each other out? As long as I was feeling well I didn’t worry about any of it.

Meniere’s (by my own non-science description) is the sensation of often painful fullness and pressure in the ears, tinnitus which is ringing, thumping, whirs, waves and that loud sound when a microphone has feedback problems.  I’ve experienced short periods of time where my hearing blanks out in one and sometimes both ears and I hear nothing at all. Silence. I struggle to hear in crowds, meetings and classes where there is background noise.  When my ears are flaring, understanding the people I love most is the job of mentally wading through the noise to focus intently on the sweet voices that are being distorted and pulled apart by a chaos of sound that only I receive.

It’s easy to sneak up on me. An unfair result to my family is that I am easily startled when they enter the room. I have no idea they’re headed my way. I’ve lost the sound of their footsteps.

The quiet things that fill in the tiny parts of a joyful life ~ like the sound of my husband breathing as he sleeps, birds as I sip coffee on the back paddock in the morning and neighbors approaching up the street as I play with my plants in the front yard have all been given an annoying auditory addition that sometimes blots the sweet quiet things away.

Tinnitus keeps me awake at night. At times the noise is maddening. I get irritated and smothered by it. It is sometimes emotionally difficult aka sometimes I privately cry, wipe those damned tears away and get back to it. I stay busy and cushion myself with the sound of my children to drown it out. I’d much rather hear them than a high pitched EEEeeeeeeEEEEeeeeee any day. Closed Caption and TV volume turned up high is how I understand a movie without bothering the husband or child next to me with “Huh? What did she or he say?” I’ve recently decided to stop asking and ruining their show. Conversations in the car are trickier. I keep reaching to turn the radio dial up to increase the volume of my children’s voices. (I wish that were a real thing.) Instead letting my hand go back to the steering wheel and ask them to repeat louder for Mama…again.

Hold up! Did I just agree to ice cream for dinner?
Hold up! Did I just agree to ice cream for dinner?

Meniere’s is more than hearing. It’s severe vertigo. Shortly after moving to our new house, without warning I was sea sick on dry land. My head was caught up in a storm and my compass was tossed. I could feel my eyes involuntarily twitching in my head trying to find solid and unable to recognize it. I clung to my bed sweaty and desperate. I climbed on fours into the shower and laid on the cool surface for relief and a safe place to vomit. Thank God for Crohn’s Disease and a forward thinking prescription for nausea meds that melt on the tongue or I would have been desperately dehydrated. My body wanted to void more than it actually did and my output was a violent spouting of liquid in the Ileostomy bag. I could not eat or drink. I was a human Exit. When all was gone I was a naked, ratty haired carcass capable of breathing and gag reflex. I was worried for my stoma herniating. I was concerned about fluid loss. I was afraid of how much worse this would get if I had to go to the hospital. The ride alone…. In that place I could not imagine it. After two and a half days with no North I was left limp and used up. Slowly over the next few days the vertigo passed and I was able to carefully navigate around.  I’ve not made it back to the care free normal I was before this latest tossup.

Turning my head too fast, some movies and TV shows, walking in a dark room without touching walls or surfaces for reference and even closing eyes while rinsing hair in the shower sets my head in a mini spin. I am clumsier than normal and I have even stumbled and fallen once because of it. I live in brain fog and vomit more than an Ileostomate should. The energy it takes to understand those around me, navigate the world and do well in it creates a fatigue that we as IBDers understand. I just feel as though I am carrying enough for two right now.  Sometimes all I can do is lay in a cool dark room and breathe until it passes.

In case you were wondering, when it comes to Meniere’s Disease there is little funding or understanding of the cause. There is no cure and treatments are life limiting.

I am receiving care. I take meds for vertigo and nausea which so far are sedating and largely ineffective. I am hopeful for the most recent med and would love to report in a few weeks that it works.  We shall see what time will tell.  But as IBDers, we understand that patience through the process of discovering the right med is part of the twisting road to finding the very best fit. I feel lucky to have doctors that are working the problem. Before this is done I imagine more experts will be welcomed to the team.

All this adds up to me taking it easier. I’m not participating in all the fun things I would rather be doing on a fine summer with my little family. And frankly, I haven’t shared with you because I’m not so jazzed about this turn of events. It’s still a work in progress to find reasonable relief.

No happy ending yet.

But there’s gratefulness for a supportive husband, helpful children and invested doctors.
And hope.

Much love to all of you my Sweet Bolognas <3

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?

Remember Who You Are

Ostomy Beautiful
Please remember who you are:
You are lovely just the way you are. You have earned the right to be okay in your own skin. You have earned the right not to hide. So Don’t. Your life and your story are valuable.


It’s Okay To Say NO

For a minute there my world ramped up to be busier, and more stressful as the gift of time and energy competed with available hours in a day.  The things I needed and wanted to do contended with requests and obligations from others.  With each additional invitation to participate, it began to feel as though the world was closing in around me.  Life became more hectic as each square on the calendar was sectioned out to the enth degree.

busy calendar
This was so not working for me.


Drowning.  No, seriously.  I feel like I am suffocating in my own life over here.

And you know what?  It’s all my fault.  A couple weeks ago whilst snarfing down lava hot chicken tenders bought at the deli section of a Vons so that I would have food in between obligations, mentally running my line up of ‘to dos’, and considering making a list on my phone to see if I could streamline trips to fit more in, my life hit a snag. There I was sitting in my car with parking lot as my scenery; it dawned on me.  ‘Girl, put down the chicken.  This is how people go crazy.  You are on the brink of losing your fool mind!’

Every Single Day.  What was I thinking.
Every Single Day. What was I thinking?!

Time for a new plan.

I sat there taking in the stillness of my car.  Merlin’s Beard am I Tired!  I’m working full tilt and still feel like I’m failing.  I’m lonely as hell and I have zero social life.  How can I be this worn out?

Well, I was giving myself away one yes at a time.

So how do I fix that?  On the side of that paper chicken bag I began the ‘to do’ list to save myself.

Schedule ‘Me’ time and keep it.  Okay, that sounds easy.  But my Me time was one of the first things I was willing to give up to be helpful to others.  Me time includes yours truly on the lanai sipping a yummy beverage, going on a walk or reading a good book.  I love to pre prep crafts so I have last minute fun things to do with my kids.  I love jump roping and cannot tell you the last time I actually did that.  I really miss it too. What about that repurposed painting I have been putting off since last summer or the guitar waiting for me to pretend to be a rock star or that crochet hat/beard matching set I want to make for my kids because I think it would be hilarious?  Ya know….the silly little things that make kooky people like me feel whole.  Joy events.  One at a time my Yes gave all that goodness away.

Say No.  Which I found to be a really hard thing to do at first.  Because I’m not always a straight out No sorta person, it was a matter of finding the right language.  What I began to say is this: ‘I’m sorry, that’s not going to work for me/my family.’ And give no further explanation.  If it’s a person you are somewhat close to, simply state that you wish to scale back your calendar.

You’re thinking, ‘Oh no Christy, that’s so rude!’  I say, not at all, it’s actually very smart.  People who want to talk you into giving your time will reason away any excuse you make to prove that you can and really should do what they ask.  No further information gives the asker nothing to grab onto to change your No to a Yes.  Don’t say, ‘I’ll think about it.’ or ‘Ask me later.’  That just means, ‘I’ll say yes if you ask me another way another day.’  Don’t fall for it.  Stick to your guns.

Be prepared for people who don’t take no for an answer.  Not everyone will be understanding when you decline.  I was surprised to find some passive/aggressive behaviors when I began to say no.  Have I been saying Yes for so long that the word No is surprise enough to inspire a temper tantrum-ey episode?  From the reaction of some, I think yes.  If so, then look at it as an unacceptable (yet educational) eye opener into the character of those you were once obligated to.

tantrumFor those people who try to negotiate past your no, do not respect that you need a break, and act the fool about it, repeat the words: ‘I’m sorry, that is not going to work for me.’ And sashay away.

Never Justify, Argue, Defend, or Explain yourself to unreasonable people.

Never JADE.  Simple.
‘That doesn’t work for me/our family.’  Really is a good enough reason.

If the people you worked so hard to help really do care about you, then they should understand that you are going to need a break from time to time or move on to other things.  And that’s okay.

Be prepared to defend against the task masters.  I’m not saying that task masters aren’t the sweetest people you have ever met.  But some have gotten accustomed to their ability to talk people into doing things.  On looking back I can see where my willingness to be helpful has played to their strengths.

Don’t bring the calendar and pretend I don’t have one on my phone.  A willingness to open my calendar equals a willingness to open myself up to make more obligations.  Master task givers feed off my willingness to ‘see if I can squeeze one more thing in’ and thrive off of assigning aka roping one more soul into doing their bidding.  Because I am generally friendly, open and willing, I was an easy target.  I need to work on being more aloof.  Open calendars are for doctors appointments and joy events that I chose for myself.

Clear the calendar of clutter.  Call and bow out.  It really is okay.  At first it was a challenge to say no. But I soon found it to be liberating.  I had to really look at my calendar and seriously consider what I’d signed myself up for.  Do those things make me happy?  Do they serve me at all?  Are they robbing from time with my family?  I was the one who agreed to all those things.  Me.  So then I was responsible for untangling myself from the obligations that aren’t really important.  I went down to bare bones.  My purged calendar now consists of check ups and school events for my children.

Clean. Slate.

And I’m going to leave it that way for a while.  I’m in Yes Recovery and I require time to become comfortable living like that.  I need my life to be about love, supportive family, and our experiences together.  I was guilty of letting others carve time away from those people that matter most to me.

Be clever about your yes.  Pick a thing you are good at and stick to it.  A lady at our church does drinks.  Sounds simple right?  With dedication to coffee, juice and water, she has lifted the job of providing drinks to a higher level with skill and an eye towards presentation.  For every wedding, funeral, brunch, luncheon, or benefit she creates the nicest, most welcoming drink experience ever.  Drink Lady stands proudly to tend her beverage artistry.  After the event she cleans her station, launders the fancy tablecloths and looks forward to next time.  She loves it, it doesn’t take up so much time that she is over obligated, and because of that, she is able to give her time joyfully.  Does she do other things?   No.  Her specialty is beverages.  Simple.  We all respect that.

Don’t worry.  When things calm down for you there will be plenty of opportunity to jump back in.  But when you do start over with your time, treat it like the precious thing it is.  It’s okay to tell people that you only obligate yourself to one event at a time.
The following things count as events that are worth limiting to one at a time:
Sports for you or your kids.
Church or community events.
Homework, school or education of any sort.
Rest, recuperation and recovery of the health, spirit, or grief-loss.
Focus on the family/marriage/partner.  (It counts and really matters you guys)

Beware of the pratfalls.
*Some people confuse their value as a person with their service or deeds done for others.  Service to others is essential to being a good human being.  However, the ‘others’ that you focus on should start with self care and work outwards from there.  You have nothing to offer if you are sucked dry from giving too much of yourself.  The quantity of time given does not equal the quality of human you are.

*Teach people how to treat you. If you are always there, the forever ‘go to’ person, your presence will be taken for granted.  Before long it will be assumed by others that you will automatically be there.  You deserve to willingly offer your time and energy and give your very best every time without stifling your creativity with over obligation.

*Decisions made in times of stress or over obligation aren’t always the best.  It’s really okay to decline and keep yourself free to get through to a smoother path.  More is not better right now.  In fact, perhaps this is the perfect time to take the initiative and unload that calendar of clutter.

*Be careful of the ‘Switcharoo’.  Something that initially sounds reasonable, but then switches into more commitment than you bargained for.  Something like:  Agreeing to Help with a bake sale when the job description should have been Run the entire Bake Sale.  It’s no fun when a switcharoo turns a job into something beyond what could reasonably be done well by one person.

*The idea that serial obligation equals a social life.  Giving time can be very social and feel like you’ve gotten out and had fun.  And in some circumstances friends can be made.  However, by and large, you will run into people who are there for the event and gone.  Chances are these are not going to be your friends a year from now.  So if you are over obligating yourself in search of friends and it isn’t working, it’s time to consider letting that plan go.

*Ego driven – Some things we give our time to make us feel really good.  And that’s where it can get out of hand.  It’s nice to feel special, needed and important to the success of a project or group.  It puffs up our ego and makes us feel like a bit of a super hero.  It’s really easy to let ego driven projects grow to the point where they rob from other aspects of your life.  Don’t forget to look around to see if you’ve left your spouse and children/ loved ones behind in the process.

*If I don’t do it, it won’t get done.  Yup, I sure have felt that way before.  It’s time to pick sanity over obligation.  If you are feeling strangled by over dedication, it is not only okay, but necessary that you say No.  If it’s important, it will get done.  It just doesn’t always have to be you that’s doing it.

So that’s it guys.  This is what I’ve been up to lately.  My life has gone from being an unattainable list of things to do to a more reasonable balance.  It’s not perfect or always graceful, but I’m getting there.  The result is that I’ve been sleeping better, having fun, and laughing more.  My kids have responded and even commented on having more of me again.  Ouch, right?  But also strong incentive to keep my calendar clear for myself and for my family first.

Oh, what’s that?  You need a coordinator for a jog-a-thon coming up in March?  Gosh, that sounds fun!  I’m sorry.  That really won’t work for me.

Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.



Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

Gallbladder Surgery

The last couple of days I’ve been busy with surgery pre prep. This includes doing things like packing my hospital bag (Packing Video)

Prepping a week of outfits for my children.

Clothes for the week for the kiddos.
Clothes for the week for my kiddos. The littles wake up and put the clothes on their sleepy little bodies. Less morning stress for everyone = Win!

Thinking ahead about little lunches to pack.

Fruit cups to make lunches and snacks for the week a snap.
Fruit cups to make lunches and snacks for the week a snap.

And in the past I have even done this.

Food to eat while I'm away?  Check!
Food to eat while I’m away? Check!

And tidying my bathroom and closet/dresser. (Which happens to be nervous cleaning with the benefit of coming home to a clutter free, stress free environment.) And just making sure everything is set to go smoothly while I am away for a couple days.  Aka paying just arrived bills, make sure my volunteer time at the school is covered, make sure drop off and pick up times are written down for my hubby, practice speech with the little guy so it’s easier for when he practices with his Daddy, etc etc.
You get the drift.

The surgery that I am having is a gallbladder removal. My gallbladder has been a quiet offender for the last nine years.  It was hiding as mysterious pain that I passed off as overexerting myself or being a weekend warrior and unexplained increased liver levels resulting in unfavorably high numbers that over time magically resolved.  What finally helped us put it together was this last December I passed a gallstone which landed me in the ER. Yow, that was exciting!

Gallstone ER visit.
Gallstone ER visit.

So the deal with gallbladders is they help aid digestion by storing bile created by the liver, then releasing that bile, aka gall, into the digestive tract which helps break down and emulsify fats to help digest your food. Yay!

However, when your gallbladder gets cranky and inflamed or maybe tossing stones, is when things start going sideways. Stones can back up into the liver causing liver issues, which is something I am dealing with. And sometimes stones can back up into the pancreas and cause issues there as well. Also, as in my case, once stones start moving through, a bunch get together and decide to work their way out which is painful as can be. So that’s why I’m going in.

Much of the time gallbladders can be removed laparoscopically. Which sounds terrific. There’s less down time and a smaller incision. Very good things. But, if you’re like me, and you’ve had a couple too many abdominal surgeries, there is a higher opportunity for scar tissue which makes the laparoscoping (<—-Yes, I made that word up) harder than it has to be. In essence, it makes the surgeons job tricky in that scar tissue creates an obscured environment for her/him to see and maneuver to do the job.

So I’m having a standard incision below the ribs right above the gallbladder. This will make a straight shot in for surgeon to clearly see the offending area and do his/her job.

Laparoscopic versus open procedure.
Laparoscopic versus open procedure.  Photo credit:

This plan of action is good for a couple of reasons.

1) Scar tissue is a beast and I am Fantastic at growing scar tissue. I’ve even had surgery in the past to remove scar tissue. So I’m pretty sure there’s a bunch in there. I don’t want my surgeon to go in laparoscopically and then have to turn around and require standard entry. *Zero hitches in the plan!*

2) If the ducts that lead to the liver and pancreas need to be flushed, Voila!, there’s plenty of room to do that.

3) Another scar to rock on the beach! No, not really. But yes, really. For the damage this little gallbladder time bomb is turning out to be, removing it will be worth the battle scar. And let’s be real. I play organ favorites. I just like my liver and pancreas WAY more than a sputtering, malfunctioning gallbladder. So there!

4) The bile produced by the liver to aid in digestion will still happen. Instead of going through the gallbladder, it will empty into the small bowel to begin its digestive aiding job there. (Whew! Thank goodness I still have that part.) If I had a colon still, I may experience looser stools. As an Ileostomate, this is already the case, so less of an issue for me.  Score for being an Ileostomate!

Things I am going to keep in mind moving forward is diet. I am already an infrequent fatty food enjoyer. That’s one point for me. Plus we officially live 1000 miles away from my very favorite corn dog stand located in Otis Oregon. So in that regard I’m safe. But it’s those festival, Oktoberfest, onion ring, occasional joyful moments that I will have to be more mindful of. *Gasp! * Don’t forget ~ SUPERBOWL!! Well, it must be time to perfect those boneless hot wings. <—-See? I love food. And I will continue to do so thoughtfully.

In the end I am grateful that I am not having a bowel surgery. For ONCE I’m not going in for IBD. I am grateful that being an Ostomate is actually sort of helpful in this case. I am grateful that the surgeon doing my procedure is also top notch in Ostomates of all sorts. (Which is a BIG deal to me.) I look forward to improved liver function and no more painful stones passing. I am glad to be having this done at a time when the rest of my world is relatively calm. I am super grateful that my husband is able to take time away from work to care for our children.

Most of all I look forward to getting back to regular life. I have plans in action that I want to see through and a life that needs living with me at my best.

The 23andMe Experience


23andMe-IBD-study-for-DNA-300x300So a couple weeks ago I was honored to be a guest blogger for The Great Bowel Movement – Awareness for Crohn’s & Colitis where I wrote about my experience participating in the 23andMe IBD DNA study, why it is an important step forward in research for our community, and why we need your help.

I was delighted when TGBM loved my blog enough to post it on their page and delighted all over again when 23andMe liked it enough to share on their media as well.

And so, I will post the article here for anyone who hasn’t seen it and ask that you consider participating.  Because you, my Sweet Bolognas, are important.  You matter with all your uniqueness.  You have all the clues for cure found through struggle and pain, resilience and hope.  You are vital in getting to the bottom of IBD.

With that I give you  23andMe – Be a Part of the IBD Genetics Study

” I am quite similar to many of you, in that I have participated in fund raising, educational events, studies, and testing for a cure. However, this study is a bit different. It’s the idea of looking at the root, versus symptom management and is in line with new DNA based thinking in regards to finding cures for diseases. 23andMe and Pfizer are working to shine a spotlight on IBD and giving us the opportunity as a community to participate in turning the direction of our own disease.


Ostomy Number One

It’s no secret. I love my Ostomy. I really, really do. But it wasn’t all fantastic exuberance. I started out unsure, scared and entirely uneducated. It was rocky y’all.

In my life I have had three Ostomies. Today I will share with you the origins of Ostomy number one.

I was seventeen. I had been sick for years. The first day I ever heard about an Ostomy or that you can even live with part of your bowel removed was when I was in the hospital during a hard flare that we were unable to control. Not a new thing at all for me. I had just come from a semi sedated colonoscopy and still felt bloated and painful from the procedure. I knew it was bad when the screen was turned away and the doctor got very quiet, annunciated his words and became very serious. He was face to face with the living monster that is IBD, trying to remain professional. As an adult who has been on the business end of a doctor clicking into ‘work mode’ I understand he was taking samples, noting disease symptoms and more. As a teenager lying on the table, I felt broken and wrong. Vulnerable. As if I was what he was angry about, not the disease actively chewing up the insides of a young girl. It was painful, scary and very isolating.

A few hours later the doctor came into my private room located at the end of the hall. My grandparents followed behind, grim looks on their faces, they found a place against the wall. Doc came to stand by the side of my bed and said something along the lines of. ‘You need surgery to remove your colon. You are not responding to treatments. You are going to have an Ostomy’. I started to cry. How do you live without your intestines? Then he got mad, raised his voice and scolded me to Stop Crying! ‘You are going to have this surgery and you are going to be Just Fine! People live without part of their bowel all the time. And You are going to be one of them.’
Head swirling, I half heard words about a surgeon he had contacted to do the procedure and he was off.

And that was it.

I had zero information. My grandparents could offer nothing but sorrowful glances in the now very cold room. I felt light headed as the blood drained from my face. I tried to wrap my mind around the idea of being purposefully hollowed out and surviving that. What kind of life would that be? My grandfather had been a medic during the war and through all my bleeding, painful episodes and late night fevers, he was a rock. Not anymore. With a grim set to his mouth he repeatedly cleared his throat, swallowing hard. Damn! He’s trying not to cry. My grandmother gave up on even trying to keep it together as her flowered hanky shakily dabbed already puffy, tear streaked eyes. Grandpa snapped into action, grabbed grandma by the shoulders and firmly escorted her out of the room. Just as he passed the door he looked back, eyes tracing my form from feet up, then connected with mine. He paused and called me my special name only my grandfather is allowed to use, and left with my grandma before him. I heard feet echoing down the hall and my grandmas full on crying.

I was left alone.

Well, Shit!

Looking back, that time in my life had been one very long flare with moments of ‘all hands on deck, she may not make it through this one’. So many hospital stays, medications, blood transfusions, z-tracking iron into my butt, IV hydrations, banana bags, Gatorade and pureed food. I was trying my best but barely squeaking by. I was overly familiar with illness and pain. It was part of my identity to the point where being defeated by IBD was a very real possibility that I had begun to be okay with. I held hands with death as lightly as possible. I didn’t want for it to sweep me away. But in an odd way death was more of a possibility at that time than growing up was. Most of me was fighting, but a small part tickled against the back of my brain that the fight I was giving was really not working that well and one day my battle may be over whether I wanted another go at treatments or not.

I even had ‘the talk’ with my grandparents where my funeral was planned out. I numbly worked out my wishes about end of life care, resuscitation, organ donor status, even a somewhat healthy picture was chosen for my obituary.

This was life at seventeen for me.

IBD was artful in its scraping away at my youth. It savored my childhood and was desperate to take more.

What I dealt with health-wise made high school stress, bullying and all the other things teens deal with feel both inconsequential and insurmountably difficult. There was no easy place in my life back then.

But then came a new way to fight I had never heard of.


I was admitted a day before the procedure into a private room in the big city teaching hospital an hour from where we lived. In perfect timing with a desperate need of a break from drinking, then vomiting the Go Lightly, my surgeon came to visit, followed by a gaggle of students in white coats. They listened intently as my surgeon and I talked. My surgeon is the nicest, most intelligent woman I have ever met. She ignored those students and focused on making sure I understood the procedure I was about to undergo. She sat on the bed beside me, pen in hand, drawing on the sheet as she spoke. The images she created on the stiff white cotton came to life as pen imitated needle and finger became scalpel. My curiosity turned to hope under the light of her knowledge. She spoke quietly but excitedly as she wove the words that created my new life of Stoma, Ostomy and J-Pouch. All questions answered and mind filled with possibility, she and her team left.

What was blank unknowing filled with guesses and assumptions became confidence. By the time she was done visiting I Believed I was going to be better. I looked forward to the procedure. I felt like a member of the team. This thing wasn’t being ‘done to me’. I was an eager participant.

From then on Dr. D was my Dr. Frankenstein and I would be her lovely little monster. Re created from parts that were otherwise broken into something marvelous and fantastic. I was made new again.

Early the next morning nurses carefully prepped me. I was first in line for the surgical suite. They made that sound fancy. As I stood with gown pulled to the side we designated a stoma site. The other nurse, gathering the belongings I had placed in a clear hospital bag turned to compliment the choice. ‘Okay’ I thought to myself ‘This is working out already. I can do this.’

In a chilled room, laying on the gurney amongst shelves with positioning blocks, supplies and rolling carts covered with fabric, I was given my IV and covered with another blanket. Curious, I asked what all those things were for. A nurse counting white gauze squares set her stack aside, answered, then gestured to a set of double doors indicating the operating room. ‘Ah, that’s where the magic happens.’ After a while a gentleman held up a syringe and asked what I wanted to dream about. ‘All the things I’m going to do when I’m healthy again.’ What will you do first? ‘Go to the beach.’ That sounds great. I watched as he pressed the liquid into my IV. The head of my gurney was lowered and the countdown began. 10, 9, 8…..7?…..

And that’s when my life began again. I woke up cozy and warm, covered in heated blankets. It felt like I was only asleep for a few minutes and magically placed in another room where a nurse brought me to reality by forcefully ordering me to Breathe Deeper! Your oxygen is too low. You need to try harder and show me you’re with me. Getting closer, she peers in my eyes. I had not realized she had been speaking to me before now. Gosh she’s grumpy. Here I am all cozy, staying out of trouble and she’s all worked up. Breathing. Pfft. Oh! Rubbing me hard on my upper arm, her words finally click in. Ah, I get it. In through the nose, out through the mouth so she knows I’m trying. She greets me. Realizing I can understand and respond to her words she asks if I know where I am.

I am moved to a room and the learning curve began. I saw my Ostomy for the first time. Walked that evening. Learned to empty my bag. Switched from liquid to soft foods. Learned to change my Ostomy. Walked more. Changed my Ostomy all by myself. Felt good enough to wear sweat pants and began to learn how to wear an Ostomy under clothes.

During that time I transitioned into myself. Life really did get better.

No more pureed food. Woo Hoo! Real food tasted so good it was downright colorful washes of happy, tingly euphoria to eat again. I went to the beach, water park and had more energy at school. I helped my friend buck hay (much to the chagrin of my surgeon) and even went to a couple school dances.

And that’s where my story leaves off.
That was my first Ostomy.

Interview With An Eight Year Old

Once a year I do an interview with my daughter about Ostomy, Crohn’s Disease and how that affects her.  It’s a great bench marker for where she is in understanding and always leads to great conversations after the interview.  Plus she likes to contribute to my Crohnie Bologna page by giving an ‘expert kid perspective’ for anyone out there with kids, thinking you may want kids or are around kids and wonder what they’re thinking.

ostomy day 077b
A Bologna mama and her sweet pea.

1. Who are you?
I am Grace. I like to read for fun. Right now it’s Harry Potter and Little House on the Prairie. I am eight years old in the third grade. My favorite color is green and I am awesome at hula hoop.

2. Do you remember mom before Ostomy?
Yes. More of a general idea of mom in the bathroom a lot, and sick. You were very, very sick. You tried hard, but we knew. You just had no energy. You even woke up in the morning tired. You looked very tired.

3. How did mom get better?
You went to the hospital. And that’s when you got it. Your Ostomy that Dr. D gave you. After two to three days you came back home but had to take it real easy. I was able to visit you in the hospital. That’s when I really understood that it [the Ostomy] was going to be a forever thing.

4. What is an Ostomy?
There’s a little pink opening on your side and you go to the bathroom through it. And you can’t control when that happens. You wear a bag over it that you empty in the toilet – like everyone else goes to the bathroom. Every day you change your tummy bag. Which kinda looks like a heart. There are different sizes and they are fun to decorate.

5. What do you think about Ostomies?
I think it’s a life saver. Makes a big change in your life. You are healthier. It saves you completely. If it weren’t for your Ostomy, I wouldn’t have a mom.

5b. What do you think of mom on the beach in a bikini?
Absolutely normal. You shouldn’t be ashamed of something that saved your life. Perfectly okay. And they’re cute!

5c. What if your friends see that mom has an Ostomy?
I’m not ashamed of that. It’s part of you. And I’ve even done oral reports about it [Crohn’s Disease] for my class. Plus then my friends will know about Crohn’s Disease and maybe they’ll be a doctor or a person who has Crohn’s Disease. Then they could help others find a cure, or if they have it, they won’t feel alone.

6. Is life better for you now?
Yes. I’m able to do regular kid adventures with my whole family. It’s like you’re not sick at all pretty much every day.

7. Why did mom get an Ostomy?
Because of a rotten disease called Crohn’s Disease. That’s when your, like from your mouth to bum doesn’t work properly and surgery took the part away that makes you the most sickest. And then you have a tummy bag. It’s harsh to think your mom is so sick she needs parts cut out. I mean, those are supposed to be working. But Crohn’s Disease gets in the way and says NO! It’s sad and good at the same time. Sad that Crohn’s Disease is in mom. But good that surgery can take the part out that’s hurting mom. There’s a lot to it. Blame it on Crohn’s Disease. When are we going to find a cure anyway?!

8. Does mom do anything to stay healthy?
You have to take medicine every day. Eat food carefully, but not always the kind you want. Like apples, nuts and popcorn. You are thoughtful about it. You change your Ostomy quite often so you don’t get raw skin, which helps you stay healthy. You get your blood tested and see your special doctor that rides the bikes. You pretty much stay active and play. Oh, and water. You drink water constantly.

9. Do you think it was a good idea for mom to get an Ostomy?
Heck Yes! Because if you didn’t you would have a really hard life until you passed away which would be sad. Now you are just a normal mom. I don’t even think about it unless were at the beach or I come in when you’re changing your tummy bag. Then it’s just interesting.

10. Do you have advice for anyone else who may need an Ostomy?
*If your doctor says you need an Ostomy, it will be okay. My mom is more energetic and healthy. Now she feels better. Nobody wants to be deathly sick like she was.
*There are two types of beauty. Kind, smart, happy, nice, energetic and likes to play and those that look good in clothes with nice hair. You can be both with a tummy bag.
*Your family will want to learn about it and the disease that made you need a tummy bag. Then once they know, they will go back to thinking of you as their super cool mom or friend.
*Being healthy is worth being brave.

11. Anything else you would like to add?
*I am worried when we get sick that you’ll get sick again and end up in the hospital. But if you did we would visit you.
*I love my mom and she is beautiful just the way she is. Your kids will still love you too.
*Maybe your kids will grow up and find the cure? I know that’s what I’m aiming for….Or designing bridges like Dad. I think either of those would be good.

I’m on your team!

CCFA Fundraising Through Spin

This past weekend my super cool Gastroenterologist invited me to participate in a spin like Soul Cycle Crohn’s & Colitis Foundation of America fund raiser.

First off I was sold on the description of ‘Party on a Bike’ and something about glow sticks. ‘Scuse me, but glow sticks automatically raise the fun level of any event and ‘party’ equals good music.

All to benefit the CCFA? I love the CCFA!

This whole thing sounded like fun before I even got there.

Heck YES! Count me in.

So after a quick online registration to reserve my spot and prompt RSVP, I Googled what I had gotten myself into.

Indoor Cycling.  Thanks Wikipedia.

Oh yah, I can do this!

My plan was to go and have fun, but pace myself so I didn’t end up falling off the bike in a pile of limp sweaty exhaustion, promptly followed by barfing on the floor.
Reachable goals ~ I can manage that.

The ride itself was held at The Rush Studio in Carmel Valley.  A lovely location with friendly staff not too far from the beach.

I arrived a tad early to a bright, welcoming atmosphere where already jazzed people were visiting, contributing to the donation box and signing up for the raffle. Everyone was excited about the ride, seeing each other and supporting the CCFA. The ladies at the front desk helped me out with paperwork and shoes. In no time I was off to make my own donation, visit and get bedazzled with fancy glow accessories. I can see why people like to come to The Rush. It’s the perfect setting.

After stowing my back pack it was time to grab towels and water bottle then head on in.

As I was a rookie, I chose a spot in the second row next to a gentleman in a white shirt which I was hoping would glimmer under the black lights. Decked out in CCFA orange and blue glow necklace and bracelets, I familiarized myself with the bike and looked around pleased to see the studio mostly full. All cycles faced a mirrored wall where a platform with room for two bikes faced us, front center stage. The lights dimmed as instructor Beth and co instructor Dr. Tommy welcomed everyone with intros and synchronous stretching. And that’s when the atmosphere changed.

It began fast, fun and sweaty. Hey, this is all the awesome of bike riding without exhaust fumes and traffic lights. I’m really digging it. The electrifying playlist chosen by Tommy kept us excited about moving to upbeat rhythms that gave the event a dance club feel. What started out as festive turned into challenging and hot as the microphone amplified voice encouraged ‘Right, Left, Right, Left, Push, Push fast as you can. Harder!’

Momentum increased as the locked in spin shoes allowed for pulling up with one leg as the other pushed against the suggested resistance in a constant circuit of pressing past personal boundaries. Legs burning, tummy tucked in, I worked to coordinate lifting off the saddle in a push up formation against the towel covered handle bars. And then again boosting out of the seat, pumping legs, with one arm raised in the air in upward reaching movements.

Arms and back agreed with buns that spin is a legitimate work out much more comprehensive than the hill hiking I had been doing to make myself think I was fit. I was a fool. This kicks hiking’s ass!

It was easy to get caught up in the wave of determination. The efforts of those around me, the voice of the instructor and the beats of the music; familiar, lyrical words enveloped me in the dimmed room, encouraging to push past the burn and give more of myself. There was grunting and sweat. Pressing up and back so hard the bike rocked on the floor. Warrior sounds from a couple bikes over. This spin thing is no joke! Legs finally got over the initial shock as fire turned to warmth. Then what was beautiful discomfort became a rush of adrenaline and heavenly endorphins. I felt like a candle lit from within. This must be the magic glow that people who love spin talk about.

The pace increased as we moved through a series of stand n’ tap our buns on the saddle, up and down motions that made me aware of a whole different muscle group hiking totally missed. As the spinning slowed pace, we focused on arms. No body part shall be neglected!  As I went through the movements, I reasoned how odd it would look if all these lovely legs, buns, backs and tummies were accompanied by spindly arms and shoulders. Then promptly redoubled efforts to match the work I put into my lower half moments ago.

And then, almost abruptly, the class was over.

We did it! There was an odd sensation of time warp as somehow 45 minutes felt like 15. I high fived the steamy gentleman beside me and twisted my shoe out of the lock to hook my leg over the arm rests for the final blissful class cool down stretch.

We were thanked for our participation and the raffle winner announced. I took my first steps on legs that felt wobbly at first, finding solid ground again with feet that had grown accustomed to pedaling.

Looking around I could see these were not the same fresh participants swagged out in glow necklaces, glasses, and headgear that had started this adventure. We were a mass of smiling, red cheeked, champions.

The Rush Studio CCFA Fundraiser
After the fun. Can you tell we’re glowing?
The Rush Studio CCFA Fundraiser
And with the black lights and glow swag. How fun was this ?!

It was an empowering, affirming, CCFA goal centered team effort. I was so honored to have been a part of it.

And here’s the cool thing about it all. Spin lover or no, this was an example of highlighting your passions and living your happiest in a way that helps others. Dr. Tommy Yen used his love of cycling to support his love for the IBD community. Team Yen raised $300.00 that day for the CCFA, with more financial contributions added later.

Thank you to Dr. Tommy Yen. Way to go with all your awesome!
Instructor Beth Abramowitz of The Rush for leading all the fun.  You are way cooler than Wikipedia said you would be.
To my new IBD friend Ryan Hill. It was so nice to meet you.
And to all the other participants for spinning, contributing, and making the day a great one.

<3 Christy

Junk Food Does NOT Cause IBD.

Junk food does NOT cause IBD.
Junk food does NOT cause IBD.

Landslide of diet questions lately.

Please let me clarify something. We -my family and I- eat a Gluten, Dairy, Soy, Casein, Food Dye Free diet for our child. Out of respect for him, when in his presence we eat the same foods that he does. Because I am a stay at home mom, this is most of my day. However, when I go grocery shopping by myself, I occasionally indulge at the local Greek shop and enjoy baklava or gyros…or both!

I do not live this diet because of IBD or my Ostomy at all. If there are any positive results, I attribute them to a whole body care idea of Gastroenterology, meds, and general healthy lifestyle, including diet, exercise and joyful pursuits.

With all that I still have flares, am very careful to eat according to my bodies needs that day, always mindful towards hydration, proper rest and fatigue levels.

I know many people who have changed their diets with amazing results. This is hopeful and inspiring. However, that outcome isn’t universal.

As for junk food? I strongly disagree with the crazy notion that junk food is THE cause of IBD. As a person who sat across from more than one well intentioned aka passive aggressive person who suggests you just ‘buck up’. It’s all in your mind. Exercise more! Have you tried X.Y.Z. supplement, diet, therapy, ‘cure’, method, spiritual cleanse? How about various detox, wearing special rocks with healing powers, massage, acupressure, acupuncture, medications, creams, ointments, oils from such and such country? Just eat more. You need a milkshake, you need a hamburger, how about adding mayonnaise to your food? I’m taking you in so this herbalist can look into your eye and ‘map’ your problems then suggest the right combo of herbs. Chlorophyll. Raw diet. And the list goes on.  Junk food is just one more way to calculate cause and blame for a disease we are still learning about.

It all adds up to the idea that the cure is in the hand of the afflicted if only you believe and try hard enough. As if our own actions, or lack there of, caused this disease that every day tries to kill us. It’s a ‘Results vary by effort put in.’ thought process that exonerates those around us from guilt. They can’t feel bad if being sick is our fault. Our choice mirrored out by our actions. Junk food represents the IBD that we willingly consume, making disease our fault.

As for a cause of IBD? I’m putting my money on good ol DNA.  Could something be a trigger?  Yes.  Environment, diet, stress, general health, exercise/ activity level, pollution, and so much more more.  As a whole, we just don’t know.  And that’s the point.

Suggesting that junk food, or any food, is THE cause of IBD is shifting energy from finding a cure, towards villainizing foods and blaming the patient as the cause of their own suffering.

Blaming, shaming, presumptuous, incorrect words passed off as fact is dangerous, isolating and unintelligent.  It serves to purposefully unload responsibility of discovery and cure onto the shoulders of sufferers and their families to navigate alone.

CCFA Take Steps San Diego~ De Anza Cove

Last year I went to my first Take Steps for Crohn’s & Colitis event. I was invited by my super cool Gastro and thought it sounded like a fun thing to try.  Why not?

Last years team pic.
Last years team pic.

In fact it was so great that I immediately began looking forward to going again.

The first thing I did was look for the sign in booth.  Before I even got to the table I met a super nice lady who saw my Ask Me shirt and we got to chatting.  She excitedly told me about her Ostomy experience and shared her enthusiasm for upcoming treatments.  How about that for an awesome welcome?!  I love my IBD community.

Anyhoo, I got signed in and went straight for the booths.  I didn’t spend enough time investigating them last year and felt like I missed out.  So off I went.

*Going for big pics so you can see all the goodness as I walk you through a photo tour of the event.*

The first booth was for a pharmaceutical company.

Ferring Pharmaceuticals.  Their motto is 'Medicine on the body's own terms'.  They work to create individualized treatments = less side effects.  My hope is in time this will be available to everyone at an affordable cost.  How cool would that be.
Ferring Pharmaceuticals.

Their motto is ‘Medicine on the body’s own terms’. They work to create individualized treatments with less side effects. My hope is in time this will be available to everyone at an affordable cost. How cool would that be?  That’s their goal as well.  I can’t wait to see it.

The next booth was MotherToBaby.  They offer support for women on IBD controlling medications who are looking towards pregnancy and breast feeding.  There are legitimate concerns about safety for mother and child when taking meds.  MotherToBaby helps answer those important questions.

Eight years ago when I was breastfeeding this information wasn’t available. Women today have the tools to make educated decisions. I like that.
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MotherToBaby card with more information.


Then there was the MPA Event Graphics booth with the bright sign that drew me in.

MPA Event Graphics creates beautiful signage.  And they had the best team shirts ever!  So if you need a stunning visual and a company that understands IBDers, this is where you want to go first.


Next there was Coastal Gastroenterology, a local Gastro clinic with a super joyful group of people.

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Coastal Gastroenterology is a local gastro clinic.  Nice to see so many options out there for people to receive care.


There were larger medical groups as well.  UC San Diego has an IBD Center with a focus on patient education and empowerment.

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UC San Diego is a local teaching hospital. They have a large Gastro center where they offer help for every aspect of care.


There were some drug reps.

This one is for CIMZIA.  They have a nifty delivery system, after initial dosing it can be done by the IBDer in their own home.  There’s help available for those who cannot inject themselves.  I was most impressed by the pro human side of it.  Trying to really make it as easy and inobtrusive in a persons life as possible, while still providing a high level of care.  The rep was very good.

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This booth was for REMICADE but the gentleman never really pushed or pressed that Remicade is the very best drug. (Some drug companies do that silly stuff ~ can you believe it?!)  He encouraged a conversation to happen between the IBDer and their gastro.  (Which I respect)  What he did highlight was the cost assistance program they offer.  So of course I grabbed a packet to show you, my Sweethearts.  He also stressed the fact that every costly med out there has an affordability program.  The IBDer just needs to know to ask.

Now you know.

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Front side showing three options available.
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Back side giving contact information.

Affordability Rocks!


Loved talking to the researchers.  So passionate, intelligent and personable.  Join research or take part in a study if you can.  Researchers and scientists power to understand IBD and find a cure lies in our willingness to participate.  We are the key to helping our own future.

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Interested in participating in research studies? This is a group that does just that.


Take Steps CCFA SWAG.  Woo Hoo!  Totally filling this bag with a snack, sunscreen and a towel then heading to my favorite beach.

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Then came time for the fund raising announcements and listening to the stories of some pretty remarkable IBDers.

This years announcer Mike did a great job.  Can you see me in the front row in my Great Bowel Movement ‘Ask Me’ t-shirt?  I had the best view. 😉

Mikes presentation on stage was positive, informative and kept the ball rolling towards the true purpose of the event.  The fearless announcer was both entertaining and endearing as he highlighted the efforts of those in the community.  A job well done.


After the stage presentation it was time for the walk.  This is where I got to visit with all the people. My very favorite part!  Everyone I spoke to was an example of inspiration, strength, courage and love.  I love my IBD community!

This sweet mother, daughter duo wearing their Crohn’s fighting shirts made by MPA Event Graphics. Such positive, uplifting and hopeful women in love with their family.

More visiting…

Chatting with the photographer. He was at last years event and is super nice.


Before you knew it the event was wrapping up.

All good things that start must come to and end.

Thank you CCFA for the Take Steps experience.  My family and I look forward to participating next year.

The Great Bowel Movements Pass It On initiative~ Sara Ringer

Sara Ringer the brains and heart behind the Blog Inflamed and Untamed.
Sara Ringer the brains and heart behind the Blog Inflamed and Untamed.

I am part of The Great Bowel Movements Pass It On initiative. This quarter ten bloggers have been chosen. The three bloggers with the most votes by June 30th wins. The prize is a wish granted towards tools to make our blogging lives better. Enriching the way we continue to give back to the community that we love so much.

You see this girl and probably know her. She is Sara Ringer, the brains and heart behind Inflamed and Untamed. Sara is a Blogger, Youtube sensation, Camp Oasis Counselor, IBD Round table contributor, Inflamed and Untamed Facebook page owner and more. Advocating and encouraging is her full time job. And her passion. Sara is smart and true and does her very best to put out facts and dispel confusion in disease processes. Sick in the hospital and just getting back on her feet – she blogs. Feeling well and clogging – she blogs. Sharing about weight loss, size fluctuations, and even death plans in a humorous yet truthful way is what she does best. So she blogs it and gives that experience to nurture her community. It’s all sort of out there for everyone to see. And we need that. It is validating, reassuring and rings true. We are not alone because Sara shares. And that’s a very good thing.

Vote For Sara.

She is the blonde with the pony tail and dark sweater on.

I can’t wait to see her wish come true.

Thank you my Sweet Bolognas 



Photo Haiku

Endurance, strength, life
Trial and struggle in this bowl
Shaping who I am

Cleaning out my office I came across a couple stashes of hospital bracelets.  Forty five bracelets make up a timeline of endurance. Their own memorial to lessons learned. I have earned these over the past twenty three years. This certainly isn’t all of them but it was most definitely a walk down memory lane to look at each bracelet and remember back to those experiences.

Taxes and Crohn’s Disease

Taxes, Crohn’s Disease and Medical Expenses.

The one time a year we sit down and discover exactly how much of our income we spent on medical.

This year 21.7% (including pre tax dollars) went to paying insurance premiums and medical bills. 11.7% of this was post tax. Aka c
ame directly out of our paycheck.

I don’t go around feeling disabled. Pretty much never. However, this cost is very disabling to our family.

And stressful.  Here’s a link to a previous post where I go over money stress as a mom with Crohn’s Disease.

Here’s to ZERO extracurricular medical activity in 2014!

Now for a list of things I am grateful for about all this: (Because that’s how I roll.)
~Taxes is a time to be grateful that my husband has a job he loves.
~Grateful for my awesome filing and record keeping skills.
~Grateful that I have a husband willing to do the taxes while I make yummy stuff in the kitchen.
~Sense of accomplishment and relief when it’s all done.

UNDY 5000 Her Perspective

CrohnieBolognaIBD 2014 Team Sign
Walking Cancer Out the Door!

Gastroenterologists aren’t just great for meds and blood tests, they can also be a resource for activities in your local community.  I am quite fortunate in that my Gastro Professional is passionate in regards to his patients and frequently participates in fun runs, cycling and other events supporting various gastro causes.  How fun is he?!!

That’s how I found out about the UNDY 5000.  What?  Yes. As in  Under. Pants.  A 5K done in your underpants and or costumes for the purpose of raising awareness and funds to cure cancer.  Well of course I was intrigued.  As you may remember last year I went to my first awareness/cure walk.  It was the Take Steps with the CCFA which was AMAZING and I plan to go again!  If I could go to the UNDY 5000 I would. 

After checking with the calendar and husbands willingness to attend, (He was leaving for a business trip the day after UNDY) I began to prepare.  As we had to leave the house at 6:30 AM to get there on time I needed to make this as easy as possible for all of us.  There were costumes to be made and laid out the night before, back up outfits in case of rain, easy to grab breakfast, easy to carry safe snacks for my wee ones, water, and of course signing up with the Awesomest team name ever!  By the end of the week team CrohnieBolognaIBD was ready to go!

The morning of the event included tucking sleepy kids into costumes, one costume change of heart, a simple yet filling breakfast, little people strapped into safety seats, coffee in travel mugs, a last minute camera check and off we went.

Nice morning, pleasant walk, great view.
Walking with my little Scientist and her pet monkey.

As you can see from the crowd behind us, there were loads of people.
At this point in the walk my Minion traded his monkey for the sign.

When we arrived the lot was overwhelmed and we were ushered to overflow parking.  Already there were loads of people.  The day was warming up and there was excitement in the air.  My kids spotted the inflatable bowel and were eager to check it out.  A quick parking lot review of costumes and we were on our way to sign in and get racing bibs for a Scientist and her pet monkey, a Minion and his pet monkey, my personal Cabana Boy and me, Wonder Woman.

There were Pirates, Teenage Mutant Ninja Turtles, a tribe of Minions, lots of tutus, dogs in underpants, Superheroes and even downright racy people who took the whole ‘underpants in public’ thing quite seriously. (Bless their sweet lil hearts.)

There were team prizes for funds raised presented by poised announcers encouraging the crowd while also giving facts and keeping the entire event on schedule.  There were also booths with various vendors, support groups and information. 

Husband aka Cabana Boy ended up being more of a
pack mule with all the UNDY swag and sock monkeys.
Still smiling and in good spirits.
(Thank God for husbands with a sense of humor!)

But most of all were the people.  Every one touched in some way by bowel disease.  They were clustered in teams but soon began to share with each other.  They told stories of strength, courage, family, determination, loss, and survival.  Most were funny.  Some somber.  Loved ones refusing to stop fighting cancer on behalf of those currently battling, those in remission and those gone.  I thought of my friend who I can happily say is in remission from cancer.  I thought of my Bolognas, some of whom have been touched by cancer, but most certainly have been drawn together as a community by bowel disease.  I was immensely glad I went.  I was happy to have brought my children.  To expose them to this form of doing well for the world is my parenting win for the weekend.  I was proud of my husband (who was squeamish about dressing up, especially in underpants) who really embraced the experience. 

The 5K was quite pleasant.  As the day warmed my Dearest became somewhat of a pack mule as children decided parts of their costumes were too hot or heavy to carry.  Husband took it in good stride and gallantly suggested it was his workout for the day.  *Collective Awww!*   

Restrooms along the way, pleasant weather, nice breeze and race volunteers on the path to cheer and give high fives to the kids made the experience fun for everyone.  We took it easy to let our little people scamper after ducks and explore the shaded grassy areas.  An ideal family outing for sure.

Here I am as Crohn’s Vanna. 
I love it as a teaching tool and a conversation starter.
Lots of education happening here.

We left feeling uplifted.  UNDY 5000 was easy, fun and invigorating.  I would be happy to go next year.  I look forward to participating in more walks to support causes in line with my passions.

These are my little people proudly standing by the ‘Normal Colon Tissue’.
Let’s go on more walks to support research and keep them that way.