Another Adventure Begins

At this time tomorrow I will have arrived in Arizona.  Not exactly looking forward to a 7 am flight but I am excited about landing in 80 degree sunshine!  This trip has been in the works for a few months now and thanks to some amazing friends, family and Kona bike company we raised enough money to make it happen.  Many, many thanks to all of you!!!

As you know, I have had gastroparesis for quite a long time now and if you have kept up with my journey over the years you also know how many things I've tried to overcome it.  Some have helped, some not, but each one has given me the strength to continue exploring and not give up.  I have traveled to the east coast to visit John's Hopkins when the SIBO was out of control and wanted expert opinions, which I got (and got rid of!).  I've gone through 2 j-tubes and now TPN.  Over the summer I met with an ND in Vancouver and made weekly visits up there to see an acupuncturist, both who helped someone cure her GP.  Years of yoga, meditation and qi gong classes have helped to ground me during tough times.  Exploring diet modifications, especially a low-FODMAP, helps to keep severe bloating and nausea at bay.  But, in the end, there is still pain and dysmotility, and I'm still on TPN to survive.

Over the summer a dear friend of mine, who also lives in Bellingham, has GP and a j-tube, drastically improved her ability to eat through a treatment called myofascial release, also known as MFR.  A physical or massage therapist trained in this, works with the fascia in the body, connective tissue that surrounds muscles, vessels and nerves.  Throughout our lives this tissue can bind up and cause areas in the body to not be as fluid as they should be, particularly when exposed to physical and/or emotional trauma.
In the future I would like to do an interview with a specialist to provide more detailed information on how this works.  I'm not an expert in MFR and just beginning to understand it.  What I do know is that it has helped many people overcome painful and debilitating health challenges.  I have been working with a practitioner in town over the last couple of months and next I will be seeing a PT who has 20 years experience with clients who travel from all over the country to see her.  I'm doing a 2 week intensive and hoping for the best.


Now just because others have improved doesn't guarantee the same will happen for me.  I mean, don't get me wrong, I'm crossing my fingers (and toes!) that a miracle happens.  If anything, I just want to be able to eat enough to not rely on TPN.  If it doesn't happen during this trip, I will continue to receive treatment and give it more time.  At the very least, however, it will be a wonderful trip no matter what.  Sedona is known for it's beauty and healing energy.  I look forward and feel blessed to have this chance to get away, go deeper within myself and find content in life's simple pleasures.

That said, I will not be posting on this blog or FB until I return.  It's a perfect chance to "disconnect" from the virtual world and take advantage of the time away.  My notebooks are packed though and I fully plan on journaling.  Wish me luck and wellness and I can't wait to share my adventure with you when I return!

Thank you for your support and allowing me to share this journey with you.

Seeing the Moon Behind the Trees

I was sitting outside on the back patio tonight, overwhelmed with what has happened the last couple of days.  Beyond the fence stand giant cedars, branches reaching out in every direction, blocking views of the sky beyond.  These branches are like the obstacles we face, so many and so thick that often it's hard to see through the thick of it.  But I hear birds chirping and notice a faint glow surrounding them.  So instead of sitting there, slumped over feeling sorry for myself, I get up and slowly walk across the yard, cool green grass under my bare feet.  I look behind the trees and there it is.  The moon is big and bright, like a crystal ball waiting to tell me my fortune.  Sometimes when we can't see the light, we might just have to find another angle to look from.    

Post Procedure: Healing with Love, Rest and Soup

Another procedure survived!  It's sad when going under anesthesia becomes as common as the yearly check up, especially at the age of 32.  I can't even actually count how many times I've been through it, though it still feels like a strange and confusing place to be.  When we arrived at the clinic, my husband in tow with our entertainment bag of phones, Ipads and magazines, I went through the usual paperwork (no, I don't need a copy of the HIPPA practices I have signed a hundred plus times), clinical questions and dressing in the oversized hospital gown that makes you feel like you have disappeared under a king size bed sheet.  T and I got cozy, him playing a game on Ipad and me drooling over summer recipes in the latest Real Simple (don't ask me why I torture myself).

Goodbye J-Tube #2

Well the time has finally arrived.  Tomorrow at 9:45 am I will be admitted into the hospital as an outpatient for a minor procedure (laporoscopic) to remove my second j-tube.  It's exactly 12 hours until this time comes and though I'm more than excited to have it out, I'm equally scared and anxious to once again "go under."
The surgeon who placed the tube back in January completely disagrees with the decision to get rid of it.  Yep, the tube that has not been used in 6 months, caused me to feel worse when I did use it, and not to mention the daily pain and bleeding I currently struggle with because of it.  In fact, he was so confident that he proceeded to tell me that if I don't have it as a back up and my TPN fails "you will certainly die."  Seriously?  Is that the kind of support and compassion we should be getting from our doctors, the ones we are paying so much money to so that we CAN get help?  "What is your plan B?" he continues.  Hmmm, I can sure tell you it's not coming back to see you Dr. P!  And it's certainly not a tube sticking out of me that does nothing for my well being but cause more trouble.

Thankfully, I do have an amazing primary care doc who has provided me with confidence and support so that other's don't take me down.  I know this is the right decision.  And as far as plan b...one day at a time, breathing my way through each moment with hope that I will get better.  There is no cure so this is all we have, HOPE.  I've personally met people who have recovered and they continue to be the light at the end of the tunnel.

Wish me luck on a quick recovery and will be back to write about what's next on this Journey!

Feeding Tube Awareness Week and TPN Week 1

Last year at this time I posted about my experience and success with the first feeding tube and how it changed my life.  What a year a difference makes!  Though the week is wrapping up, I want to again bring light to another Feeding Tube Awareness Week, 2013.  I've shared my own experiences with the j-tube over the last 1 1/2 years and though I'm not currently using the one I have, there are many other resources available to learn more.  These tubes have saved countless lives and provide essential nutrition and calories to those who cannot take enough in otherwise.

TPN - Next on the GP Bucket List

“When you have exhausted all possibilities, remember this - you haven't."

- Thomas A. Edison

Oh how the road blocks just keep on coming.  Lately, I'm being quite honest and open with you as I navigate this new path of uncertainty.  The journey has not changed...the story of my experience with gastroparesis and any ideas, inspiration and support for others along the way.  Even when it feels like walking in circles,  dizzy with frustrations, or possibly sliding backwards, I want to continue to share what is going on.  

Finding Balance Yet Again...J-Tube #2

Bookmark my sister-in-law gave me :)

Today I was blessed with the opportunity to meet someone here in town, female, my age, bright and positive energy, who just happens to also live with a j-tube, amongst other challenges including gastroparesis.  It seems awful to say what a relief it was, but truly it felt great to sit next to someone, on my cozy couch, sun shining brightly on us through the windows, sharing experiences we never thought would be a part of our life.  Being in my early 30's, surrounded by active and healthy friends, it is so easy to feel alienated, to try and understand why this is happening to my once-upon-a-time active and healthy body.

J-Tube Procedure Scheduled

My lip quivered as I signed the agreements with the doctor yesterday, accepting the risks of surgery.  Though it is laparoscopic, and fairly simple, we still have to be "warned" of complications.  I've been through this before in my early twenties, twice actually, for ovarian cysts and endometriosis.  Luckily, that resolved itself after the age of 25.  Now, here I am again, with a date set for this Friday, January 11.   Even though I knew this was coming, now that it is on the calendar, it's that much more real.


What I am looking forward to is everything going smoothly, a short recovery period, and most of all, gaining strength with the additional calories my body cannot otherwise take in.  When this happened before my ability to eat more, both quantity and variety, grew over time.  I'm determined this will happen once again and life can move forward.  If I have to live with a feeding tube to supplement calories for longer then I choose, then that is just a part of life I have to accept.  There are millions out there living with a form of illness or disability, who are forced to live a little different, however, they still live well. 

In 2011, my kind and compassionate mother flew out to help me adjust, my angel during the tough times, and continues to be there for me daily, even if it is by phone.  Tomorrow, my sweet father will be arriving (both still live in Kansas where I grew up) to help out around the house and be there with his good sense of humor and positive attitude for as long as we need him.  I am truly blessed to have such supportive family and friends.  It's not easy letting go and allowing others to take care of you, even more difficult when you are used to being the strong one.  I'll be working on my handout for what I CAN Eat and making a list of what people can do to help over the next couple weeks.  I highly recommend this when going through a rough time.  People do want to help but most of the time don't know how.  Have the ones who understand food limitations make you a soup or snack, send someone to the store to do grocery shopping, another to help with some cleaning around the house, someone to walk the dog, and of course those who can bring you a funny movie or trashy magazine (haha) and help you smile and have some good laughs.  Of course, sometimes, we just need to be alone to rest and be in stillness, also an important part of healing.  

Okay, I'll stop rambling.  The thing is, I'm scared, nervous, anxious, you name it.  Writing helps me to put things into perspective and find ways to remain positive, not only for myself, but for all of you who need it as well!
Thanks for being a part of my journey and I will keep updates coming as I can.

In the meantime, Natural Vitality's giveaway is still happening and will be sent out via newsletter soon. No matter what is going on in life, I always enjoy a good giveaway :)

2012 - 2013: Re-cap and Update, Triumphs and Troubles

Reflecting back to January of 2012, it feels like a distant planet.  At this time last year, having become comfortable with the feeding tube, I was packing my bags and preparing to head south to Mexico for what turned out to be a fantastic getaway.  After returning, refreshed and renewed, I enrolled in the health coaching program at Institute for Integrative Nutrition.  The year flew by as I studied and began working with others looking to make healthy changes in their lives.  In addition, September kicked off the first annual Awareness Walk for Gastroparesis here in Bellingham, WA.  
That in itself was a job, rewarding for sure but wow, I have a whole new respect for fundraisers!  The year also brought many challenges, including a trip to Johns Hopkins in Baltimore (way on the other side of the country from WA!) to further understand SIBO and how to best deal with the new diagnosis.  After finally clearing that up in October, shortly there after tube troubles arose and, if you have read the recent updates, began a fast and furious downward slope with my health.  

Patiently Waiting - Update

It's the day after Christmas and though I was able to enjoy time with family, open gifts next to the tree, and sip delicious hot ginger lemongrass tea that I opened the night before (with a fancy new tea diffuser!), reality is setting back in.

In the previous post I opened up about the challenges I've had recently with the feeding tube and the choice to have it removed.  I was confident things would go well.  After all, I CAN eat a variety of nutritious foods and have helped others do the same!  Well, it seems as though it is not enough to sustain me. I've always been on the skinny side with a super metabolism my friends would agree was highly unfair.  Back then I could eat whatever I wanted all day long and not gain a pound.  The difference...my weight was healthy, I was active and felt good.

In the last few weeks the pounds have continued to drop almost daily, leaving me at my lowest weight yet.  In fact, it's hard to believe because I can still walk around and function, eat mini meals throughout the day and think well enough to play games, read and write!  However, I don't feel "normal," with a constant lightheaded feeling, hunger despite just eating, completely full, and easily fatigued.  We met with the doctor in Seattle last week who strongly advised getting a tube back in soon.  Unless I can get over 2000 calories a day there is no other option, and gaining weight at this stage is priority.

I was given the choice to either get the same type of tube as before, a G-J which is done endoscopically but does go through the stomach OR a J-tube which would be placed surgically (laparoscopic) by-passing stomach completely.  A few doctors I've spoken with are leaning towards the J.
At this time, I'm patiently waiting for my local docs (PCP and GI) to call me back with their thoughts and a referral.  This is all quite overwhelming but continuing deep breathing while asking for what is best and meant to be to gracefully fall into place.

For more information about enteral feeding options, check out the ThriveRX website.

For obvious reasons, health counseling is not something I'm focusing on right now but I do hope to provide this in the future again when my own health has improved.  Until then, I will continue to post updates and share thoughts, inspiration and support at JourneywithGP  FB page.

If I can do this, you can do this and vice versa!  Lets stay strong together and continue manifesting a healthy and happy future for us all.

Troubles Arise, Goodbye J-Tube

"The tube seems to have coiled up in your stomach and is likely the cause of your pain.  There are two options: 1) Come down to the hospital in Seattle and have it fixed/replaced, or 2) Have it removed, which is simple and can be done where you live.  A decision should be made soon."

The words I had feared suddenly came to life and bounced around my head, reverberating throughout my body.  Strange, because somehow, simultaneously I felt relieved.  I wasn't crazy!

After finally healing from SIBO I was finally beginning to feel "normal" again, for living with GP anyways.  However, about a month ago I started experiencing some pain around the tube site and under my right rib cage.  At first, it seemed to be a flare so I just tried resting more, hoping it would pass.  At that point I wasn't using the tube nightly anymore but as the days passed and pain increased I began using it more.  Instead the pain intensified and by last week I was doubled over, at the doctor for the third time, insisting something was not right.

First, there was the immediate problem at hand, a small infection at the tube sight.  With a big sigh of disappointment, I stubbornly agreed to start on antibiotics.  Next he ordered an abdominal CT scan but because it was late on Friday, it would have to wait until the following week.  I spent the weekend resting and distracting myself with puppy walks on the beach, reading, movies and LOTS of deep breathing.  When Monday finally rolled around I couldn't wait to get in and get scanned.

Early evening we found out the news with a recommendation to call the GI doctor in Seattle, who had originally placed the tube, first thing in the morning.  My initial thought was I'm not crazy!  Then, I have to survive another night like this?  Unfortunately, I did not get much sleep but did enjoy some 3 a.m. tea and a good novel to relax and distract with.  When I spoke with Dr. Ko from UW she gave me the options of removing or replacing the j-tube.  Her recommendation, concerned about the recent weight loss from pain, was to replace it for a few months.  My mother, caring and concerned, wanted the same.  My head spinning, I let her know I needed some time to discuss this with my husband and would call back.  This was not how it was supposed to happen.

Feeding Tube Awareness and Update

This week, from Feb 5-11, is Feeding Tube Awareness Week.  The goal is to raise awareness of enteral/tube feeding as a positive and often life-saving medical intervention for those who are unable to eat and drink enough to sustain life and thrive.  I never imagined my life would turn out this way, having a feeding tube that is.  In the beginning I was scared and sad, not understanding how it came to this. Today I am thankful because it saved my life.  Though it is not a cure for GP, it has provided me with a temporary solution and enough strength and energy to stay healthy, an option I did not have prior to the tube.  

Update: Tube Replacement

It has been 3 months since having the J tube placed in August.  If you don't know from previous posts, my tube had a bit of a malfunction starting the day after it was put in.  A small pin hole barely seen by the eye was discovered when I went to flush the tube out.  Instead of flowing through easily it clogged and squirted out the side.  Since then the doctors had me wrap special tape around it, which, ghetto as it may have looked, has for the most part worked.

Update: Infection, Antibiotics and Recovery

I have been on hiatus since my last post due to a number of reasons but mainly to the infection that came up around my tube insertion.  Back in July when my doctors insisted on me getting the feeding tube in order to put some healthy weight back on, infection was my biggest fear.  Luckily, this one wasn't so bad.  It took me on a trip to the ER over the weekend the moment I saw the redness spreading out, taking care of it before taking a dive for the worse.  I was given an IV antibiotic right away and a week of take home antibiotics.

Taping the Tube and Deep Breathing Continues

Great News:  The doctors called on Monday morning and decided that it would be better and obviously less invasive to continue to tape the tiniest of tiny hole in my tube instead of going back in and having it replaced.  Apparently, they had to remove the latex part of the tube due to an allergy that could have caused the hole, which inevetibly could happen again.  So, the journey continues, slowly and one day at a time.
I went to have acupuncture today and it did wonders for my anxiety.  The idea of this tube is a little overwhelming at times, as well as accepting my body not being able to do much for myself right now while I recover.  Luckily, I'm surrounded by support (husband and mother ESPECIALLY!) and don't know what I would do without everyone.  It can be hard to accept the help but learning to receive can be as great of a gift as giving, good for both the heart and soul.
That said, a technique I often turn to to reduce anxiety and bring myself to the present moment is called pranayama breathing (click for instructions).  According to Yoga Journal it has a  "mysterious power to soothe and revitalize a tired body, a flagging spirit, or a wild mind."  


Please share any techniques you have for dealing with anxiety during trying times!
Stephanie

My Feeding "me magical and nourishing liquid sunshine" Tube

Well, after 2 months of trying everything I could to gain weight including medications, a botox treatment and multiple ways of taking in enough calories, I finally gave in and accepted that the feeding tube (G-J Tube) was the necessary next step.  I met with 3 doctors including my primary and GI in town as well as the GI at UW in Seattle.  All seemed to agree this was essential to at least get me back into a safe place with my weight.

Update: Treatment Plans

After two months of patiently waiting I finally got in to see a specialist at UW Medical Center in Seattle.  Though I have done extensive research myself on the limited treatments for gastroparesis I was really hoping they would have some ideas I hadn't yet heard of.  The doctor was very patient and kind, taking the time to absorb all my questions and concerns.  She then proceeded to go over her main concerns, being my weight, and treatment options.  There are basically two ways to approach this: