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.

Why Am I An Ostomy Advocate?

Up until nine months ago I would have been an unlikely Ostomy Advocate.  Don’t get me wrong, I am happy, funny, and outgoing.  I am not shy and I genuinely like people.  However, when it comes to my health I was a very private person.  And sadly, I had it all wrong.  I lead my life in a way to minimize the effect of my disease.  I would go to my treatments, surgeries and checkups then get back to life as soon as possible.  I was under the impression that the less I thought about Crohn’s Disease and the harder I pushed forward to be ‘normal’ the better.  Past co workers would notice my occasional absence and ask about it.  I always shrugged it off or made an excuse.  Everyone knew I had special dietary needs and I let that be an umbrella answer for everything.  I never told them what I was going through.  I have friends that I have known for years and see several times a week who had no idea of the health issues I was living with.  Some of my closest family members did not even know.
Why?  Because to me, it was just my business.  Everyone has something to deal with.  No ones life is perfect.  So I accepted that Crohn’s Disease must be my thing.  There is a saying that goes:  Everyone gets the short end of the stick sometimes.  It’s not that you get the short end of the stick; it’s what you do with it.  With my short end of the stick I strove to overcome and be normal.  I also did not want to be labeled; ‘Too fragile, Debbie Downer, hypochondriac.’  I did not want the judging that comes along with having a sickness that can knock you out without warning.  ‘She can’t be a good mother.’  ‘She is unreliable.’  ‘She is lazy, needs to eat better, take XYZ supplements, and exercise more.’  Peanut gallery information from people who have no idea what it is like to have Crohn’s Disease.  Only when things got very bad (I was headed in for permanent Ileostomy surgery in a few days) did I let two friends in on what was up.  ~It is fair to say they were quite surprised.~  Looking back I can see that up until I told my friends; I was protecting myself.  Telling them was my first try at letting others know the truth and really showing what was going on.  Thank God they were good about it and have never judged.  It boosted my confidence that everything would be okay. 
So why would someone so private decide to share?  And not just share but create a blog, videos, and a face book page that anyone could read.I had a conversation with my surgeon.

When it came time for me to have my permanent Ileostomy, I knew I was in good hands.  The surgery went smoothly, and I was able to be discharged early.  I was pleased with my surgery result and went in for the usual post op check up.  I was entirely thrilled to walk in feeling like a new woman.  I was in incredible pain before the surgery and had already improved beyond all my expectations.  I had a smile on my face and a spring in my step.  Life was beautiful and I was living it up.  My guts got a clean bill of health and I got the okay to resume regular life.  All in all a very good check up.  My surgeon and her resident looked at me and proclaimed that no one would ever guess that I had an Ostomy.  How healthy I looked, and so full of life. 
Then it was mentioned that some people choose not to have this surgery and end up with fatal results.
*record scratching in my brain*
Here I am walking on rainbows and beaming sunshine out my smile and could not imagine a better outcome, yet someone would choose NOT to feel this good?  After a moment of talking about Ostomy Pride and how there is a movement against Ostomy shame that I was learning about, I left for my hour long car ride home.
In the hour it took to drive home I had made up my mind that my life had to change.  And here’s why ~ My silence was hurting others.
My gut instinct was: I am not okay with people dying because they do not want a bag.  This is the mantra that goes through my head and the reason for my openness.  I missed so many opportunities to share, encourage, and help.  Not anymore.  Nope, not for me.  I was going to share my head off and find every way to show how cool it is to be an Ostomate.  Suddenly everything was so clear and much easier.  The weight of hiding who I am and what I was going through dropped off. 
Now, I get it.  Surgeons don’t just take out colons and rectums for funzies.  I had a long history of being very sick and had exhausted all viable efforts to be better.  After all that effort and pain, why wouldn’t I take a stand for health and happiness?  What would cause someone to say ‘no’ to an Ostomy?  Is it Fear? Isolation?  Vanity?   I can’t do anything about vanity.  But I can help with the fear and isolation.  If I was willing to be a little uncomfortable and share my experience, perhaps others would not feel so alone.  They could envision a bright future and dispel their fear.  They could see that there is health and happiness on the other side of an Ostomy surgery.  They could see that care of an Ostomy is easy.  The world would know that Ostomates don’t stink or look funny.  They would perhaps begin to see the humor in it, and the advantages of having an Ostomy.  Maybe they would even look forward to activities they have been too sick to enjoy like swimming and camping.  If I shared my experiences, others would see that ostomates are sexy, vibrant, and lovely.  Just maybe I could start the world thinking……It was wrong of me to keep my struggle to myself.  It was hard on my husband and on me.  I did feel very alone and forced myself to be strong when I truly did not feel that way.  I am the girl who can smile through the fire and I know if I can do that then I am also strong enough to help others through it.  I have been through the maze of IBD Crohn’s tests, drugs, surgeries, success, failures, and self doubt.  I have paid the price with pain.  I know where the pit falls are and have inched my way through them.  I know I can help others.   

So this is why I advocate.  I had it wrong for so long and know there is a better way.  Pride and showing yourself for who you are in the brilliance that is YOU is far better than hiding and pretending to belong to another person’s normal.  You don’t have to strive to be some unattainable ‘normal’ set for those without a chronic disease.  Just be you ~ but spiced up with a little Ostomy Pride on the side.
Here is my facebook page: https://www.facebook.com/profile.php?id=100000819230334#!/CrohnieBolognaIbd  I am Crohnie Bologna IBD.  Like me and join in on the conversation about Ostomates.  My page is support for parents and families with ostomates but I have love for all ostomates and IBDers.Here is my Youtube videos: http://www.youtube.com/user/ChronieBolognaIBD/videos  I always love doing more.  Check from time to time to see what is new.  Don’t forget to ‘like’ my page if the video was helpful to you.

Thank you,



Who am I?

I am a Pacific Northwest wife and mother who happens to have Crohn’s Disease and an Ostomy.