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IBD

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.

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Next time I’m either hugging or voguing this thing. My photographer strongly discouraged such high-jinks. Darn!
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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!

IBD Social Circle Summit Day 1

Today started early with a trip to the airport and kisses good bye to my husband and wee people. Five hours later I arrived in Washington D.C. for the IBD Social Circle Summit put on by Janssen Biotech. My sweetheart driver Muhammad, who kept calling me Ma’am, was delightful to chat with. D. C. traffic was certainly exciting. I was immensely grateful that he was driving, a dazzling conversationalist and was thoughtful in pointing out historical landmarks in our nation’s capital along the way.

At the hotel I was greeted right away by Stephanie of Tonic Life Communications who coordinated everything so seamlessly in advance and anticipated every question I needed to make my first trip to the East Coast a smooth one. This was a blessing and much appreciated as one of my not-so-super powers is getting hopelessly lost. And because I’ve never been farther East than a layover in Denver on the way to Houston, I needed all the help I could get!  So that on its own was a great big bucket of awesome!

Next I was off to my room to freshen up with plans to discover something to eat. While there I heard bagpipe music from the street below. Food can wait; I’m off to check that out! Turns out the IBD Summit coincides with the annual pipes and drums memorial for police officers who have fallen the previous year. It was a lovely tribute that felt more like a celebration. The ground shook like thunder and the air vibrated with the magic of bagpipes and drums. You could physically feel the music move through you. I am so glad I went. People were visiting with each other, perfect strangers striking up conversation. It felt like a festival. I heard from historical tourists, someone came from Ohio to visit family, another in town for business. Of course, I shared that I was here for the summit and shared what IBD was. One person knew what I was talking about and the rest were caught up to speed. Lots of fun with friendly people who were game for taking part of their day to visit and share a parade with each other.

Parade1 Parade2 Parade3

Lovely.

Tomorrow I get to meet some of the IBD bloggers I follow and look up to in person. These intelligent, funny, creative people that engage and educate. IBD Family. WOW!

Now don’t forget, tomorrow is the IBD Social Circle web chat “Preparing for Procedures and Surgery”.  So please sign up and participate if you can.  Don’t miss out.

211_01-Social Circle Webchat3_4.29.15 FINAL

What a perfect way to start this kick off to Digestive Disease Week. I look forward to tomorrow when the official IBD Social Circle Summit begins, and can’t wait to share with you.

Until then.

Be well my Sweet Bolognas

*Janssen paid for my travel expenses for the Summit.  All thoughts and opinions expressed here are my own.*

Digestive Disease Week 2015

So I’ve got exciting news.  Thanks to Sara of Inflamed and Untamed for suggesting me, I am attending the IBD Social Circle Summit as part of Digestive Disease Week!

It’s like being handed a golden ticket to Willy Wonka’s Chocolate Factory.

Heck Yes!

211_01-Social Circle Webchat3_4.29.15 FINAL

The IBD Social Circle Summit has been put on by Janssen Biotech.  It’s a way for pharmaceutical, medical and patient advocates to get together to focus efforts towards awareness and education.  These are the brains and souls that dedicate themselves to solve the ultimate IBD puzzle.  And they do it with humor, accuracy and passion.  I feel both thrilled as can be and out of my element in the most deliriously joyful way.  Most of all so honored just to be able to attend.

Last year I watched in GI Fan Girl appreciation as some of my favorite in the IBD community got together to share their knowledge.  It was hopeful as a patient to see the process in which minds of varying disciplines get together for a common goal.

I plan to document my experiences and share with you along the way.  So follow my Crohnie Bologna IBD Facebook Page and Twitter @CrohnieBologna.  You can also follow using the hashtag #DDW15.  The schedule feels like a magical whirlwind of gastro health awesomeness.  It begins with a web chat on Preparing for Procedures and Surgery and ends with the Documentary Premiere of Swimming with Courage and Crohn’s, chronicling Crohn’s patient Ryan Steven’s swim across Lake Erie in an effort to raise awareness for IBD.

To join in on the fun you can register to participate in the IBD Social Circle “Preparing for Procedures & Surgery” Web Chat.

In the spirit of full disclosure, Janssen Biotech, Inc. paid for my travel expenses for the summit. However, all thoughts and opinions expressed are my own.  Which is freeing.  I can speak honestly and not feel as though I am there to endorse any company or product.  I can just be myself which will likely include a contained amount of fan girling, geeking out at the uber smart gastros and most of all meeting people within my IBD family.

I can hardly wait.

 

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.

 

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.

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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.

Ostomy

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.

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

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.

Crohn’s Guilt ~Finances- The Deep End

 

Money, finances, the cost of living with Crohn’s, and how to balance it all is a tricky subject.  People in general don’t like talking about money.  As a culture we don’t openly discuss budgets or debt.  In some circles it is considered taboo and even rude to share honestly about our actual individual economic circumstances. 

As an adult with Crohn’s I will tell you that financial guilt is a large component of the entire picture.  As a wife and mother with Crohn’s, guilt weighs heavier because I see in a thousand tiny ways how my disease is robbing from my families’ bank account.

‘This is the part where I feel guilty and horrid for costing so much $$.  A self loathing of the part of me that has Crohn’s.  A knowledge that if I didn’t get sick so damned often we could go on vacations and have a better standard of living.  I am feeling pretty shitty and worthless right now.’

This is part of a real conversation I had with my husband as the bills from my latest hospital stay start to roll in.  The current one is for $23,271.30.  I still have the Urgent Care bill, Radiology, Lab, and the After Care bill on the way.  Thank goodness we have health insurance.  In the early days of our marriage we did not. 

As my dearest calmly and reasonably tries to calculate whether we spent over 7% of our annual income on medical expenses, yet again, to perhaps qualify for a possible tax break; I think back to similar conversations.  All versions on the same theme we have had for the past sixteen plus years.  I have lost count of the tens of thousands of dollars our little family has spent on Crohn’s Disease. 

We are a one income family.  I am a stay at home mom to two children, who are our priority.  When I am healthy we live comfortably.  We all know that budgeting is important.  But budgeting around the ambushing nature of Crohn’s sometimes feels impossible.  And that is where the guilt comes in.

During the hard times we have scrimped, ate less, worn sweaters to reduce the cost of using heat, and just gone without.  I have learned to make most everything we need, and became crafty by necessity.  Being thought of as frugal is a badge of honor.  My husband and I have skipped birthday, anniversary and holiday gifts to each other.  I cut my families hair and I have gone ‘all natural’ avoiding the salon for myself until on the brink of jungle fever.   ‘New clothing for Mom’ is not an ongoing line in our budget.  I replace items stained, shrunk or destroyed by motherhood.    

Sure, I didn’t pick to have Crohn’s.  None the less, I am the one who is always sick.  It is truthful to say our financial hardships are because of the Crohn’s that lives in me. 

Because of the immune suppressing Crohn’s medication, I am the one with the body that can’t fight off every cold and flu that comes down the pipe.  Yet another way my body continues to be a wrecking ball for our families’ finances.  One of its worst aspects is the unpredictability of it all.     

The stress of that knowledge weighs heavily on me.  I love my children.  I go the extra mile and use my crafty skills to ensure they are never without.  They are well cared for and participate in sports and play groups.  They are happy, social little people.  My husband and I have taught our children to appreciate the small things.  A picnic at the park, scooters in the back yard, walking at the zoo, trips to the beach, and gardening are all activities we enjoy as a family.  We are in permanent stay-cation mode.

I am resentful of my own body because our family spends its money on Crohn’s versus family adventure.  It is hard when our daughter comes home from school and asks why we have not been to Disney Land if her friends and class mates have.  It is impossible to put a vacation goal on the map for eighteen months from now and know we can afford it at the time. One night in the hospital or even an emergency room visit wipes that entire vacation budget away. With Crohn’s there is no such thing as ‘fun money’.  We spend our hard earned dough on just the basics and save the rest. 

When I am at the deep end of Crohn’s loathing, I feel bad for my husband.  When I am sick and bleeding money faster than he can make it, I don’t know how my sweet spouse can stay so calm.  During those times I feel helpless to make it better.  I wish I was strong enough to make Crohn’s disappear forever.  There are times when I privately cry with fiery anguish at my hatred for Crohn’s in that moment, and sorrow for its injustice towards my husband.  My wonderful man deserves a wife that is healthy all of the time.  He deserves to share his life with a woman who is not so acquainted with the inner workings of her own guts and hospital procedure.  Guilt whispers cruel intentions into my brain during woe filled times. I feel the need to be especially kind to make up for the hardship that Crohn’s lays on my family.

I am lucky enough have a husband that loves me through it all.  I am fortunate that he has never blamed me or fed my guilt.  My husband treats it like a goal to accomplish as a team.  He works longer hours and I find ways to work out the budget and arrange payment plans with the various medical facilities.  He wraps me up in his big ol’ man arms, lovingly calls it a ‘red month’, and assures me we will get through because that is what I need to hear.  And with scrimping, payment plans, and doing without, we do.  I just have huge guilt. 

So, there is my guilt.  I have shared it with you to expose yet another unspoken truth about IBD.  I don’t feel guilty all of the time nor do I let it consume me.  Never the less it is a very real part of my life.  It generally follows after I pay the bill for my very expensive medication, Ostomy supplies, family doctor, urgent care clinic, blood lab, gastro specialist or hospital bill.  It is a constant stream of money flowing out to pay the loan shark called Crohn’s.  I suppose if it were for college or music lessons, surfing lessons, or even a better working washer and dryer I wouldn’t feel so bad.  The mountain of financial guilt feels sharply infinite because we are spending our money to continually win against Crohn’s.  It feels like an uphill battle that we only chip away at to stay on the margins of healthiness.  I know I am worth it.  But I don’t like being worth it all the time or this much. 

Let’s Talk About Sex

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

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

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

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

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

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

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

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


 Happy love life everybody.

Happy World IBD Day!



Happy World IBD Day

I love this purple toilet filled with $$ to fight cancer.  I need one for IBD!




Stump grinding action shot.  So much fun!




Feeling like a bad ass mostly done with my work.




Beautiful iris given to me at the parade.  Smells sweet and tangy.



My darling husband greeted me this morning with a cup of coffee fixed just the way I like it and wished me a Happy World IBD Day!  He remembered!  My husband is so sweet. 

Then my children and I met our friends to take in a local parade!  I LOVE parades.  I love how everyone is happy, smiling, waving.  They sing, dance and are joyful.  I love the costumes, juggling and effort that people put into their display.  I have no shame.  I will clap, wave, and talk to just about anyone who is part of a parade.  I cheer people on, tell them how nifty their displays are or how lovely their costumes look.  I take pictures and smile until my face aches.  Yes, that’s me.  I LOVE a parade.  The only thing that makes me happier is that my kids love parades as much as I do.  I jump up and down inside of my mama heart and I fill with joy at the happiness and wonder my children get by attending a parade. 

Afterwards I was so very lucky to go home and discover my husband hard at work in our back yard.  He was using a stump grinder to remove the last bits of arborvitae.  It is a big red power tool.  It is supported by two knobby tires and is started with a pull cord similar to a lawn mower but way more powerful.  Of course I want to give it a go.  If you ever get the chance to use one of these do yourself a favor and go for it.  It is so fun and quite satisfying.  It is sweaty and dirty and loud motor action that is hard to stop at just one.  By the time I was done I ground down 14 stumps!  Quite proud of myself I trotted off to order some pizzas as we were all quite thrilled with our results and we were still celebrating IBD Day.

So Christy, how is a parade and stump grinding celebrating World IBD day?  I am glad you asked. 

I am so stinking happy to be alive. 

Parades have always been celebration to me so it was doubly good that it was pre scheduled for today.  But stump grinding?  Yes.  Even stump grinding is awesome when you are grateful to be healthy enough to do it.  I was thinking while grinding and hit upon the idea that this time last year there is absolutely no way I could have been able to do just one.  I would have sat on the porch and smiled on with encouragement.  That would have been it.  Crohn’s is a clever thief that is heartless and thorough.  It was able to take over for too long.  But now I can get up, sport my awesome Ostomy t-shirt and grind a stump.  I did something new for the first time today and that is amazing! 

My kids had their mother, my friends had someone to cheer a parade with, my husband had someone to be his partner in yard work and that is all worth celebrating.   

That is how I celebrated World IBD Day. 

I showed IBD who’s boss!

Interview with a Six Year Old

Interview with a Six Year Old



Grace 6yo and Sean 3yo.  How lucky I am to be their mom.



I am a mom.  I love my children dearly and care about what they think.  My kids are smart.  They could see that their mom was not well.  To tell them to not worry and give them no further information would cause them to fill in the blanks themselves.  This would lead to unnecessary stress and worry.  I have tried to always be careful about giving accurate yet age appropriate information.  I stay open to their questions and conversations.  Recently I turned the tables on my six year old to see her view. 

Q- Who are you?
A- I am Grace.  I am six years old.  I like to swing.  I like to help make dinner.

Q- Who is in our family?
A- I have a mom, dad, brother and a dog.

Q- What are our jobs?
A- Mom stays home to cook, clean and do lessons with me.  Daddy works at an office and makes bridges.  My job is to do a good job in my lessons.  Brother’s job is to have fun and use the potty.  We all take turns feeding the dog.

Q- Do you remember what it was like before mom’s tummy bag?
A- Yes, mom had a hard time going to the bathroom.  She couldn’t play a lot with us and stuff.  But she read us stories and played puzzle and blocks with us on the floor. 

Q- How did mom get better?
A- Mom went to Dr. D and got fixed up.  She attached a tummy bag to moms’ tummy.  When mom was asleep Dr. D put it on there.  Moms gonna have it forever and ever.

Q- What is a tummy bag?
A- It is a bag that hooks onto your tummy and you poop in it.  There is a pink thing in there that the poop comes out of.  It doesn’t hurt.  There are big bags and small bags.  I like decorating them with my mom.

Q-What do you think about moms tummy bag?
A- It’s cool.  I always know mom has a tummy bag but I mostly see her as just my mom.  Most of the time I forget she has it.  She is the only mom I know that has a tummy bag and that is awesome.

Q- Is life better for you now?
A- Yes because we can do more fun things.  It’s like that whole bad part went away and I have my mama back.  That’s the most happiest part. 

Q- Do you think it was a good idea for mom to get a tummy bag?
A- Yep, mom can do more things with us and she will not be sick anymore. 

Q- Do you have any advice for other moms or dads who might be thinking about getting a tummy bag?
A- You can get rid of the pain and you will be able to run, jump, play and swing.  It’s okay if you get a tummy bag.  Your kids will still want to play with you.  It will make you feel better.

My UC/Crohn’s Journey

My UC/Crohn’s Journey

 

Next to my twin sister you can see how sick I was.

 

Here I am healthy, happy and Ostomy Proud!



Disclaimer* There are parts of my life that are not nice and not pretty.  Some of those will be shared here.  I decided to be raw about it because I wanted to tell the truth.  I hope to show that even though life isn’t fabulous all the time- it can still go forward in a positive way.  And I understand the value of finally knowing there is someone else out there who has gone through the same thing.  Perhaps my honesty can help someone. 

When taking health history your doctor always asks, “When did you first start experiencing symptoms?”  For me, I was about thirteen.  It was during the summer between my seventh and eighth grade years in school.  I went from being on the track team and super healthy to tired and run down.  It was painful to eat, and I had blood in my stool.  A lot of it.  I did not grow up in a home where sharing inconveniences was encouraged.  So I ignored my symptoms as best as I could and kept going.
By the time I was fourteen the problem could not be ignored.  My stool no longer resembled stool but blood clots.  I had become the ninety eight pound weakling; listless and hollow.  Nurses were giving me blood transfusions and z-tracking iron into my butt.  However, I was being treated like a hypochondriac at home.  I somehow made it all up for attention.  Because of abuse issues in our family, my birth mother took me to herbalists who would not look too closely at bruises, but would peer into my eyes with a magnifying glass and give me handfuls of capsules to take each day that only irritated my already devastated guts.  The bleeding worsened.  I became so sick that I began to sleep continuously because I did not have the strength to do anything else.  I began to get transfusions to keep up with the blood loss.  I could only eat a few ounces of pureed food at a time.  It occurred to me that I very well might die.  I needed actual medical help.
 
When I was fifteen my birth mother finally had enough of me being sick and showed me exactly her level of distain in a disposingly cruel way that made it quite clear it was time to leave.   I moved into my grandparents house and was immediately admitted into the hospital.  I had pneumonia and was diagnosed with Ulcerative Colitis.  I was given blood transfusions, lots of medications, and IVs.  I was slowly given food until I could tolerate it again.  Once home my grandmother fed me in the attempt to fatten me up and my grandpa made me laugh.  That meant the world to me.  I recovered from the pneumonia but not the Ulcerative Colitis. 
By the time I was seventeen my Ulcerative Colitis progressed to the point where I needed to have my colon removed and I was given my first temporary ileostomy while my new j-pouch healed.  My temp ileostomy was Amazing!  Before the surgery I had no life.  I stayed as under the radar as possible.  I was too sick to participate like a normal teen.  Now I was able to go to school, attend dances, travel to the beach with friends, and graduate high school.  I did not get to keep my temp ileostomy for that long before it was time to reverse and become a j-pouch girl.  The whole process seemed magical.  After being so sick for so long I was eager to learn, and adapted easily.
 
Although I was largely happy with my j-pouch, I would commonly get pouchitis, a painful infection in the j-pouch that causes cramping, diarrhea, and loss of appetite.  To help myself, I kept watch out for the symptoms and remembered Flagyl as the go to medicine each time.  It became routine.  I figured if this was the worst of it, I was pretty lucky, and continued on with my normal life. 
Twelve years had passed with me as a j-pouch girl.  I had been married for nine years and I was thirty years old.  Then our daughter came along.  During the last trimester I developed anal skin tags that were dismissed as hemorrhoids.  I also had a burning discomfort and difficulty in passing stool.  All of these were treated as normal third trimester pregnancy issues.  Because of past surgery, my doctor wanted to be very careful to avoid a vertical tear that would injure my anus.  That sounded like a great plan to me.  The birth was exciting and effective.  Our daughter emerged pink and healthy.  However, I didn’t feel so great.  I couldn’t poo very well and lost weight very rapidly after birth.  I still had that burning feeling too.  I became consumed with breast feeding and told myself this must all be normal.  After all, I just passed a human out a very small opening.  I should hurt for a while.  Right? 

Then it happened.  Diarrhea came out my vagina.  The first time it happened I did not know what it was.  I had been having intense pain and all of a sudden I felt a warm gush.  Between the color and smell I thought that I must have a horrible infection.  But I did not have a fever.  I went to the doctor immediately.  No infection.  I came home baffled and frustrated.  Something was wrong.  It kept happening.  It was so frequent that I walked around with wash cloths in my panties.  I could not leave the house for long, and when I tried I would often have to rush home before even getting to my destination.  (Not what I envisioned as a new mother.)  I had figured out it was poo.  I was in pain.  I was getting acid burns from the stool ~ no colon = higher stomach acid content in output.  It was coming out my vagina!!  I was no longer able to poo out my rectum.  Stool had found a horrible new exit.  I went to my doctor.  When I told him he looked at me like I was crazy and said, “Girls just don’t work that way.” And then he prescribed me diaper cream.  I got in the car, sat in the parking lot of the pharmacy, and cried.  I was devastated.  I felt hopeless.  I was in pain.  I smelled like poo.  I was shitting out my vagina! And my doctor did not believe me!!  Then I got pissed.  I went home with my cream, got the mirror, and WATCHED IT happen.  With a determined, “Damn it!  I knew I was right!”  I cleaned myself up, applied that damned diaper cream and another wash cloth.  I was not going to be talked out of the truth again.  I went back to the doctor, told him what was happening, and he referred me to the surgeon that treated me when I was seventeen.

 
It was over a month before I could get in to see her.  All told it would be three months in total from my first mysterious vagina poo until I got to see my surgeon.  I saw her on a Tuesday.  She immediately diagnosed me as having an anal vaginal fistula. (Where the body makes an opening between the bowel and the vagina, spilling poo into the vagina.)  I was also told that anal skin tags and the burning sensation are red flags for Crohn’s Disease.  Difficulty passing stool in someone with no colon is a sign of stricture.  She scheduled me for surgery that very Friday.  Three days later I had my second temporary ileostomy to allow the fistula to heal.  My temp ileostomy also came with a diagnosis of Crohn’s Disease.

This time healing was harder because I was so sick. I was severely underweight when I went into surgery.  It was a hard recovery because I developed a deep wound due to malnutrition.  Because I was only to have the temp ileostomy for a year, I was given a loop ileostomy which retains the entire bowel by diverting stool through a stoma allowing the fistula to heal.  This allowed my bowel to keep twisting over on itself causing painful blockages.  I never knew when I would have to go into the hospital and there was no way to avoid it by eating, behaving or doing anything differently.  It was painful, frustrating, stressful on our family and very expensive.  In my daughters first year of life I was in the hospital approximately eight times.
 
My goal on the hard days was to mother my baby.  That was it.  If I was able to do more than that, it was a major success.  I breast fed her in my hospital bed and her daddy would teach her to walk in the halls of our local hospital.  We put her first.  After recovering from hospital stays I took my daughter to mom n’ tot swim class, played with her at the park, and kept going with our happy life.  We did our best to continue forward with the good parts and not dwell on the ambushing nature of it all.  I kept telling myself this was only a phase.  I just needed to be strong enough to get through this tough part and it would be all worth it.    
After a year I was very glad to have my reversal.  But things would never be the same again.  The stricture that had formed around my rectum could not be removed due to lack of tissue, but it was able to be opened a bit.  So every three days I would manually open the stricture.  A teeth gritting, breathtakingly painful endeavor.  If I did not do it, the stricture closed up further making it harder to poo, and more difficult to open.  For those who don’t know; a stricture feels like cartilage that is in your ear or tip of your nose.  It is a rigid ring of tissue that grows closing off the natural exit.  When you have one around your rectum and it keeps closing in, it needs to be broken open to allow stool to exit.  It hurts.  A LOT. 
I became used to the schedule.  I took care of my business in the evening after everyone was in bed and did not let it get in the way of my regular life.  I needed to be a wife to my husband and mother my daughter and young son.  I had a regular life to lead.  However, despite my best efforts, about once a year I would have to go in for surgery to have the stricture opened.  It got to the point where that stopped working. Then the lining of the inside of my j-pouch kept getting caught in the stricture.  I ended up with necrotic tissue that needed to be removed and the area repaired. 
Eventually we could see the end coming.  At this point I had spent five years opening my anal stricture manually and surgically.  No matter what I did my guts were still failing me.  The last year had been blindingly excruciating.  Stool that could not leave my body built up in my j-pouch painfully expanding as it filled with unevacuated poo.
 
I was to the point where I wasn’t sleeping because of pain.  I couldn’t play with my kids like I wanted to.  I felt disconnected from my family and the life I should be leading.  I was tired of pretending to be well for everyone else when I really wanted to live in wellness.  And there were times where my dearest hubby was on Red Alert- certain I was going to call ‘mercy’ and beg to be taken to the ER.  That just wasn’t fair to him.  My soul was weary of it all.    
Life is not a contest of the strongest, but my last year with a j-pouch certainly felt like one.
 
With all the not sleeping that was going on I had plenty of time to think things out.  I couldn’t live like this.  I wanted my life back.  I wanted my husband to be less stressed and worried.  I wanted my kids to grow up with a healthy mom in their life.  I wanted them to grow up with happy memories of me interacting with them versus always being too sick to play.  It was time to give up on the j-pouch. 
I met with my surgeon and asked to have a permanent ileostomy.  She agreed that it was the best choice.  Three weeks later I went in on a Friday, and came out the following Monday a permanent ileostomate. 
It was like my body was waiting for me to make the decision.  My surgery went perfectly.  My scars were beautiful.  I was given a perfect, perky little stoma.  My mean rectum was gone and I felt brand new.  Standing there in the hospital shower after surgery I looked down at myself and laughed because I realized I could not poo myself anymore.  It was that joyful, lifting feeling you get when you fall in love.  But I was re falling in love with me.  I felt like twirling but resisted because I was wet, naked and soapy.  I think with all that pain I had, the vision I carried of myself was scary.  Now that painful, scary view was gone.  I was in no more pain.  I got out on the fourth day because I really was feeling that good.  (My surgeon proudly called it ‘scandalously early’ and credited all my walking, low use of pain meds, and good spirits to my early release.)  And why not?  I had great support at home to recover in my own comfortable environment.  I also was familiar with how an ostomy worked.  (I was quite excited to see how much ostomy gear had improved since the last time I needed them and knew everything was going to work out just right.)  Plus it was hard to play with my kids in the hospital.  I did not intend to miss any more time with them than I had to.  And I am still doing that today.  I am a devoted wife, stay-at-home mom to a 3yo and 6yo, assistant organizer of my play group, mom n’ tot swim class, home schooling, not afraid to get dirty, camping, playing with kids on the floor, awesome gardener, stack the wood and rake the leaves, super active, healthy person.

Crohn’s really kicked my butt.  But I won! 
I share because I know there are others out there going through the same issues.  It is not always easy, but it does get better. 
Now I advocate.  There is no place for shame after the battle that I have been through.  Each one of us has a story that is detailed and inspiring. 

I advocate so you don’t feel alone.