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Crohn’s Disease

Ileoscopy

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.

Commonalities
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.

 

You Don’t Get A Vote.

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

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

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

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

PS. Aging is natural and highly recommend.

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.

Gowning1
^^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.

 

Gowning2
^^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.

Gowning3
^^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.

**Disclaimers:
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.

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

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

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

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

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

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

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

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

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

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

IBD Social Circle Whirlwind

Wow has life been a bit of a whirlwind. It was only a couple weeks ago that I attended the IBD Social Circle Summit. It was an amazing, uplifting and inspiring experience. I got to meet IBD advocates that I follow and admire for their educating and bare honesty. I tweeted at a live IBD Round Table which was amazing! Then there was a day of focus groups with best care for the IBD community in mind. And the finest topper of all was the honor of attending the premier of Ryan Stevens’ documentary Swimming with Courage & Crohn’s. If you have not had the opportunity to view this documentary, please do.

RyanDocumentary
Frank, Marisa, Amber, Ryan, Samantha, Sara and Dan. Panelists for the Swimming with Courage & Crohn’s documentary.

About a year ago on Lake Erie Swim 4 IBD Day and into the night I remember sequestering myself away with my lap top to capture any type of update and follow Sara Ringer’s posts as Ryan captivated us all in his grueling super human battle across Lake Erie to raise awareness for Crohn’s Disease and Ulcerative Colitis. #XErie4IBD. I sat there with my heart in my throat part cheering Ryan on, part nervous for his safety, a large part really proud. With that bystanders experience as reference I listened as panelists added further insight that served to paint a more vibrant picture of the days events. Ryan was already a beacon of hope within the community before the documentary. To see in stark detail was humbling, empowering, and powerful. The thoughtful preparation, determination, courage, and grit to do what Ryan did all to spread awareness about a disease and to give hope to others. WOW!

Zero dry eyes.

Janssen did a top job of reflecting truth onto film. Even more so, Janssen understood. You can’t make that kind of experience come alive if you stand separate from the cause. To see Ryan portrayed as the strong, raw, honest Crohn’s Disease fighter that he is, really mattered. IBD patients deserve that kind of dignity and respect. Janssen did that.

IBDFamilyPicDC
IBD Family Washington D. C.

 

The next morning I hopped on over to the DDW and experienced its Gastro Health Mecca. A landscape of booths laid out as far as the eye can see, filled with people excited to tell you about their products.

20150517_091953
Next time I’m either hugging or voguing this thing. My photographer strongly discouraged such high-jinks. Darn!
20150517_100411
The future of Gastro care spread below. I can feel the excitement. Woo Hoo!

 

All too soon it was time to head home.

Quite a wonderful adventure for sure. One that was a dream come true on multiple fronts.

The whirlwind picked up again as soon as I got home with child shenanigans, volunteerism, visiting relatives and home buying. Eek! We’re buying a home!

Here I sit typing to you; existing half in boxes. Tomorrow I work as a team with my Hubby to transport life and family to the next phase of our adventure with as little chaos as possible.

If it fits, it ships...or something like that. Glad to be doing this for the last time in a long time.
If it fits, it ships…or something like that. Glad to be doing this for the last time in a long time.

And the whirlwind continues.

Because college is next!

World IBD Day 2015

World IBD Day 2015

A while back I wrote a guest blog called 23andMe – Be a Part of the IBD Genetics Study for The Great Bowel Movement sharing my experiences with the 23andMe DNA test kit.  23andMe is doing a genetic study whose goal is to discover the building blocks that make up IBD so that we may better understand it, and in the end create better treatments and ultimately a cure.

A short time later 23andMe asked to use quotes from the article and images from my blog page. To which I responded with something like: “Go for it!”  Talk about following through.  So on this World IBD Day I was pleasantly surprised with this super cool Ta Da!  The image they created is beautiful.  And a pretty nifty thing for a kid from small town Silverton, Oregon.  I hope it helps boost Ostomate pride, IBD awareness and the ongoing efforts as an entire community to find effective treatments and ultimately cure.

So if you feel like it, go check out the 23andMe page, The Great Bowel Movements page and my article.  Perhaps you’d like to participate as well?

Glad To Be Back

Hello my lovelies! I’m glad to be back so I can share all the good nuggets with you. I spent most of the first day back napping, recovering and just starting to get caught up with everyone. What an exciting whirl wind of IBD Family and all things new and better for the IBD community. I am super excited for the future and can’t wait to share my experiences with you. I had the best time at the ‪#‎IBDSocialCircle‬ and exploring ‪#‎DDW‬ convention. There are just so many cool things to fill you in on that I will be breaking it up into different posts. But I wanted to first off say a thank you to Janssen and Tonic for making this trip possible. From food we could eat to making sure we got to our events, staying up and visiting late into the night and every tiny thing in between; we felt cared for like out of town family.

I also want to assure you that I kept my fan girling to a minimum as to not scare away the super awesome advocates that surrounded me at every turn. You would be proud of the self control.

And because this event was held in Washington D. C. I got to explore some of our nations great historical treasures with my new Canadian friend Jen of Crohnic-Crohns. Such a sweet heart. You should really go check out her page.

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Jen of Crohnic-Crohns in front of the Embassy of Canada. Check out those beautiful flags, Eh?

*Disclaimer~ This snap shot was taken later in the Washington D.C. IBD Blogger Awesome Adventure. But it was the only photo I took of the Lovely Jen as I was living in the moment so much I didn’t capture as many images as I later wished I had.

**Note to self: Must take WAY more pictures next time!

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.

 

IBD AT SEVENTEEN

I haven’t shared any pictures of myself when I was young, mostly because I don’t have very many. Recently a classmate sent this my way. You guessed it.  This super pale, ultra thin girl was seventeen year old me back in 1994 at my senior prom.  Not one person will be surprised to hear I did not have a date.  I had been undeniably sick since middle school and had moved in with my grandparents a couple years earlier.  Recently diagnosed with Ulcerative Colitis, it felt like I spent more time in our local hospitals, clinic, and recuperating at home than I did in high school.

Young me recently had a test showing the presence of precancerous cells. My colon was firm and not responding to treatment. My stool was a warm mix of blood with clots that smelled like death. Think the aroma of maggot infested chicken carcass and sewage left in the garbage can on a hot summer day – but that toxic sludge was coming from inside me. A painful, cramping, stressful way for a teen girl to live while trying to appear normal and live under the radar.  I was in constant fear of crapping my pants at school, a very real thing I experienced on more than one occasion- even during a slow dance at homecoming.  Perfectly Mortifying!  Needless to say I had no boyfriends in high school or much of a social life.

It was hard to be invisible when my hair smelled of the sulfa medication I was taking in efforts to try to feel better.  The really huge perm was a failed attempt to be free of the odor of hell infused sulfur suffocation wafting from my locks.  Those huge glasses?  It’s what I could afford, entirely NOT the trend, uncomfortable and slid down my nose all the time.

I went to class every day fevered and painful with rotten bowels and achy joints and muscles.  It was common to pause and sit on the stairs or lean against the lockers that I was sometimes crammed into because I was an easy target. I walked around heart poundingly, clammy palms, dizzy with a combo of blood loss, malnutrition and low blood sugar.  People put stuff in my hair, ran their fingers up and down the visible ribs in my back to, ‘play me like a xylophone’, threw rocks and called me AIDS patient and Cancer girl.  I missed school for regular appointments to receive blood transfusions and z -track iron into my butt which added to the gossip.

In this particular picture I was recently weaned off steroids and pretending to be healthy.  I was days away from going into a flare that would end in the removal of my large intestine and part of my rectum.  Ten days later I was an Ostomate.  My life as a J-pouch girl was right around the corner.

Ah, high school.

And youth.

I quickly returned to school comforted that almost no classmates knew about my surgery.  High school was a feeding ground for the strong and popular.  People like me were consumed daily as tasty treats.


Isn’t it funny the way you can look at a picture and remember everything about that time and place in your life?  As if the picture is documenting a moment complete with a touch of soul in it. Transporting in a way, but with the perspective of who you are now against who you were and what you experienced back then. Magic.

Back then Asacol was a trial drug administered in an enema form.  I also got to try Asacol in pill form when it first came out. 

I was young enough to hope my colon was sitting in a jar somewhere helping scientists figure out a cure for IBD.  Which was strangely comforting.  To be honest, I still like to think of my intermittently removed parts as another clue towards IBDs destruction.  (Apparently I’ve had it in for IBD for a while now.)  

As much as high school was torture, it also had its sweet spots. Twenty six days after surgery I went to the senior outing at a water splash park and took pride in the fact that no one could tell I was an Ostomate.   I had a few good friends.  I had a principal and school counselor that went to bat for me once they knew what was up.  Most teachers ignored me (which was better than disdain, so I’ll take it as a win.)  There was one special person, St. Elmo that saved me from giving up.  Twenty years later I still hug him whenever I see him.  There was one football player whose locker was right next to mine. He saw me being shoved from student to student, picked me up – books and all, and carried me to my locker so I could get there in one piece.  There was the school mascot with a tricky life of his own who was always kind and even sat with me once while I rested on the stairs.  Small moments like these made such a difference back then and still do today. 

I joined in the flag squad, went to school dances, attended a few football games and tried to be normal.  I loved honors english, working in the library instead of PE, and volunteering to help the football team by cleaning the locker room, equipment and anything else the coach needed. 

I graduated on time with an appallingly low GPA which was a miracle made up of a dozen smaller miracles.  I proudly walked across the stage to get my diploma with an Ostomy under my blue silk dress. 

These are some of the experiences that shaped who I am today.  I learned a lot about human nature -both ugly and beautiful.  I know for a fact that there are several kinds of strength.  I grew a healthy dislike of crap of all sorts – and those who deal it out.  I know what it’s like to be stripped down to the nothing and to start over again. I understand the importance of small joys.   I have experienced how with

one small action at a time you can create happiness for yourself.  Gratefulness is a living thing that spreads and grows when nurtured.  There is value in try, try, try.  And most of all, I know the power of hope.   

I consider myself lucky to have lived such an extraordinary life so far. 

I would tell that seventeen year old me to keep going.  Things are about to get a whole lot better.

IBD Soldier, Survivor, Victor

Last years big flare.
This is what Crohn’s Disease looks like when it gets too big.

Frequently I see signs saying ‘IBD Survivor’.  I suppose this feels true for so many.  But lately it hasn’t for me.   I challenge you to think of it as only half the story.  Surviving means you lived through something, overcame it, and emerged on the other side a victor.  And while we have all gone through invasive probing, painful tests, hospital stays, surgery, more surgery and hand fulls of pills every day, we have not won victory over anything but our ability to tolerate pain in effort to be well.  We don’t get to claim outright victory until IBD is CURED.  Until that day, we are all Soldiers.  Every one of us.

The surgeries, scars, ostomies and brushes with death that we experience are only skirmishes in a lifelong battle.  That does not negate the importance of surviving each conflict with IBD.  They are real victories.  We battle to survive.  However, so many people, me included, get caught up in a place of ‘feeling better’ and lose track of the big fight.  It’s like standing in a room with a murderer and not doing anything about it because he is not murdering you that minute.  We are so happy to have ‘survived’ that we slow down our fighting and forget that our job is to be soldiers until IBD is gone forever.

 IBD is sometimes loud, blatant and actively assaulting you. Other times IBD is quiet, sneaky and attacking you in more subtle ways. The slow formation of fistulas, the eventual ineffectiveness of IBD medication, the malabsorption of nutrition that slowly steals vital nutrients from your body, weakening your bones and wasting you away. Even secondary diseases such as liver failure are all favorites of IBD. IBD does not care about you, your plans, or your well being. It has one goal and it doesn’t care how it wins. Whether dismantling you violently or taking you softly, It Will Not Stop.

Until we find a complete cure, Inflammatory Bowel Disease will continue.

IBD needs to be cured for us, so we can continue on with full lives, but also for our children.  I will have really won when my grandchildren have to Google IBD to know what it is.

I try to be just like my loud and zesty Great Aunt.  She had Polio when she was a small child.  Before the vaccine.  She lost the use of her arm and it hung from her body as a lifeless but very real reminder of a disease that was once uncontrolled and quite deadly.  My Great Aunt was elegant, intelligent and happy.  She never spoke about Polio but she was a strong supporter of the vaccine that prevents it.  For her age and her time I consider her extraordinary.  She was a soldier.  And with Polio, even though she was left with a physical reminder, she was a survivor and a victor.

One day, hopefully soon, IBD will be in the same category as Polio.  Entirely manageable or preventable.  Better yet, eradicated.  On that day I will proudly say I am a survivor and victor as well.

The first week of December is IBD Awareness week.  I encourage you to educate others about IBD and be active in your IBD community on line and in your everyday lives.  Through sharing and living with courage, compassion and joy towards one another we can spread the word, support science and find a cure.

Until then continue to soldier on.