Archive for Interstim

Reprogramming

Yesterday, I updated my Interstim Device programming.  Since having the device put in the second time, I’ve gone back and forth to the office to achieve more optimal programming.  Knowing that my first device worked so well has encouraged me to not settle for “less than great” relief of my symptoms.  It’s been a struggle to have, then lose, then have, then lose the ability to control my bowel symptoms.  This cyclical life that I have been living for the past seven and a half years is overwhelming at times.  However, I am remaining positive that this time, with this programming, a difference will be made in my bowel control.

My device has been reprogrammed.  I am reprogramming.  Not only my device, but my mind and body as well.  I am encouraged that my device “feels” more optimal after this last set of changes. (time will tell).  I am doing all I can with diet and exercise to support the medical technology within me.  I am beginning to blog again, hoping to offer support in an effort to remember that my story is not mine alone.

Thanks for reading,

Lauren

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Spring Training

Lately, I have found myself fixated on the fact that I just can’t work out. Because I fractured the wire on my first sacral nerve stimulator while engaging in aqua aerobics, I am worried, actually terrified, that something like that will happen again.  Since my “go to” when my emotions run high is food, I am gaining weight.  Gaining weight, mixed with an inability to exercise effectively, is a very wrong combination for me.

Prior to having my daughter, I always was an active person.  I enjoyed training, competing, and reaping the benefits of a healthy lifestyle.  After having my daughter, and extensive therapy, I was once again enjoying the benefits of going to the gym, being a reasonable weight, and a healthy person.  I even found that I could exercise carefully and effectively with my first Interstim placement.  Once pregnant with my son, and having my pelvic floor slip, being on bed-rest for 19 weeks, fracturing my Interstim wire, and recovering from another surgery, I have continued to lose that overall wellness I used to enjoy.

And I want it back.  But, I’m afraid.  I don’t want to fracture another wire.  I cannot afford the type of trainer I would need that would be able to look at my x-rays, determine wire placement, and recommend safe and effective exercises.  I cannot afford to spend weeks/months/years back in physical therapy.  I need something, but, I don’t know how to access it or afford it. I really would LOVE to be able to get something in place for “spring training.” Any suggestions?

Thanks for reading,

Lauren

A Proud Message

Almost a year ago, I published a post called, My “Adult” Movie.  In this post I discussed the event of Medtronic producing a video about me in an effort to educate people about, and put a real face to, fecal incontinence.  Although it’s hard to watch myself, I am proud of the message I am able to portray in parts 1, 2, and 3 of my story.  I am linking the videos to this blog to allow others to easily access this information.  In addition to my videos, there are many other helpful videos that were made at the same time, talking about different facets of Interstim. These can be found once you view the videos I’ve linked below.  They will be in the sidebar.   I encourage anyone who wants further information about my personal story, or further information about Interstim, to take a look.

Thanks for reading, (and watching),

Lauren

Lauren’s Story, Part 1 of 3

Lauren’s Story, Part 2 of 3

Lauren’s Story, Part 3 of 3

 

 

 

 

We are never broken….

When my Interstim Implant broke, it was a moment of heartache for me.  That sense of security that I had relished in since August 2011, shattered.  The incontinence came back, full force.  Waves of devastation as I realized that I, once more, was pieces.  Physical and emotional carnage ensued….back to wearing protection, missing out on activities, physical pain and discomfort, emotional distress.  For me, all hinged on a successful re-implant surgery on November 21.  Sadly, even though I surrounded myself with the best surgical team, even though the surgery itself was successful, even though I spent 4 weeks in a restrictive lifestyle to give the implant time to heal,  the programming of the device has proved tricky this time.  The first time I had the implant (2011), I was lucky enough to get the right combination of programming right away, and within the first couple of days I noticed a drastic success.  This time, I am still waiting, waiting for that perfect combination of nerve stimulation to become programmed.

However, all is not lost.  After talking with my surgeon, I realize now that there are many combinations of programming that we have yet to explore.  Many ways that this device can make me whole again.  Many ways to heal these broken pieces.  Many ways to find peace.

Fittingly, this song has been on my playlist in our van as we have ventured out for the holiday season.  It makes me think about the birth trauma, my life after my therapies, my surgery, my role as an advocate, my current trials and tribulations, and the way that I can shape a negative experience into a positive one.  I hope you enjoy it as much as I do.

Thanks for reading,

Lauren

“Hands” By Jewel

If I could tell the world just one thing
It would be that we’re all OK
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
Poverty stole your golden shoes
It didn’t steal your laughter
And heartache came to visit me
But I knew it wasn’t ever after
We’ll fight, not out of spite
For someone must stand up for what’s right
‘Cause where there’s a man who has no voice
There ours shall go singing
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
I am never broken
In the end only kindness matters
In the end only kindness matters
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
We are never broken
We are God’s eyes
God’s hands
God’s mind
We are God’s eyes
God’s hands
God’s heart
We are God’s eyes
God’s hands
God’s eyes
We are God’s hands
We are God’s hands

 

A Bionic Pioneer

Last year, I was approached by a woman very interested in my personal journey with my Interstim device.  This amazing woman, Jennifer French, has co-authored a book about individuals and the way that neurotech medical devices have enhanced their lives.  I am one of those individuals.  Feel free to check out the press release and the book!  Thank you, Jennifer, for telling my story.

 

Thanks for reading,

Lauren

A Surprise while Sneezing

Last week, while reclining in a nice comfortable chair, I sneezed.  Not only did I sneeze, I simultaneously sneezed, passed gas, and forcefully pushed parts of my rectum out through my sphincter.  Was I surprised? yes. Embarrassed? yes.  Realizing that this is just another thing I get to deal with as a result of my previous birth trauma? yes.  Just another simple joy that has come along with this pregnancy.  Although initially surprised at the unwanted protrusion that now permanently makes itself known, I was not at all caught unaware that this would most likely happen.

The birth trauma that I sustained during the birth of my first child is permanent.  My sphincter was and IS damaged.  As you well know, if you have been following my blog, the physical therapy, diet modifications, constant supervision by medical professionals including my OBGYN, physical therapist, and rectal surgeon, helped me “cope” with this reality during the initial few years of my recovery.  A little over three years postpartum, Medtronic Interstim helped to CORRECT this reality, allowing me function, clenching ability, and the shot at a “normal” sphincter.  So it really is no big surprise that now that the Interstim is off, as per pregnancy safety regulations, that my symptoms of fecal incontinence, saggy rectal tissue, and pain have returned full force.

Adding to the difficulty of turning the Interstim off, my body has also been dealing with symphysis pubic dysfunction.  With both of these factors affecting my body on a constant, unrelenting basis, my ability to have any sort of normal function in regards to fecal regulation has ceased.  I am right back where I was prior to having the Interstim placed.  Incontinent and in pain.  However, by no means am I playing the pity card here.  This was my choice to carry another child, my choice to get pregnant, my choice to turn my Interstim off.  Unfortunately, it is also my reality for the next three months as I wait for my baby to be born.

Thanks for reading,

Lauren

Security

One part of the Interstim therapy that takes getting used to is the fact that you have a little device inside your body that will set off security systems and that the device can potentially be ruined by some security systems.  In knowing this, Interstim provides all implanted patients with a nice little medical card that states that “I have a device that may set off your airport/security system.”  Since getting my device implanted, I have had to use this medical card in situations that require me to pass through security systems.  Some security guards at these security checkpoints have been more than professional, some downright rude.

It is important to note that the protocol which I have been instructed to use as an implanted Interstim patient encountering a security system is the following:

1.  Present medical card, explain to the guard that you have an implanted medical device that will trigger security and could be damaged by certain systems.

2.  Ask for a pat down versus going through the security system.

Unfortunately, even with this very polite request, backed up by a medical card, some security guards have been downright befuddled at my request.  On more than one occasion, I am met with the response, “Well this system won’t really impact the device,” or the baffling “I’ll just scan you quickly.”  I have also been refused entry unless I was scanned, after the security guard refused to meet my request for a pat down.  Additionally, I have been embarrassed on more than one occasion as security guards talk in loud tones about my physical situation, inquire why I have the device, and talk about how I can just have the scan done because “this guy over here has a pacemaker in his heart and he never has had a problem going through.”

If you are met with the above situation, where security guards are not accommodating your medical situation, contact Medtronic.  Medtronic will advise you on the second course of action while going through security which is to do the following:

1.  Turn off your device.

2.  Ask for the handheld scanner (no magnets).  I am not even sure if you can go through those huge walk through devices safely.  I never have since being implanted.

3.  Place your hand over the implant.  Advise the security guard that scanning directly on the device will wreck the device, ask them to scan around.

4.  After going through security, turn the device back on.
I am hopeful that as the Interstim surgery and device become more prominently known that the training of security personnel in accommodations for security systems while increase.

Thanks for reading,

Lauren

I’m in the Office

I’m in the office.  The doctor’s office.  That flyer regarding Medtronic Interstim for fecal incontinence that the doctor distributes?  It highlights my words, my experiences.  What an awesome outcome from my work as advocate.

“I could feel again. I could clench again. I could CONTROL my bowel movements again.” — Lauren

As I’ve said time and time again, advocacy is my way of dealing with my birth trauma, with my fecal incontinence, with my Post Traumatic Stress Disorder.  OK, Advocacy and a whole lot of therapy, time, medical interventions, medications, and support helped me overcome the many obstacles that plagued me.  However, at this point in my journey, support and advocacy are all that remain in my mission to lessen the stigma of birth trauma.  It has been so very exciting to see my words in print by way of Medtronic Interstim advertising materials.  It is encouraging that my words and my experiences are being distributed to those who may need the inspiration and information.

Thanks for reading,

Lauren

Happy Assiversary

Today I celebrated my “assiversary.”  Yes, 1 year ago, August 5th, I had my permanent Interstim implant placed squarely in my upper right butt cheek.  1 year ago, my quality of life significantly enhanced, 1 year ago, the symptoms of fecal incontinence were erased.  And so, I celebrated. With 30 or so of my closest friends and family.  We laughed over appetizers of Nutella, chocolate covered raisins, toilet bowl bread bowl, and turtle chocolate candies. We dined upon sloppy joe, sphincter rings (onion rings), and roughage (salad and watermellon).  We talked about how far I have come, how much their support has meant to me, and how grateful I am for Interstim and the technology.  We overused phrases like “you bet your ass I’ll be there!” “that’s a big ass cake!” and “what a crappy time this is!” And we laughed and smiled at the success I have experienced in the past year.  Thank you for all who were a part of my special day.
Thanks for reading,

Lauren

Ambassador

In an effort to strengthen my advocacy with causes I believe in, I have become a volunteer patient ambassador for Medtronic Interstim.  In this capacity, I am available to chat with those interested in the therapy, those wanting to learn more about my experiences with fecal incontinence,  and those wishing to understand how Medtronic Interstim therapy for fecal incontinence has changed my life.  This free service is one that I hope many people take advantage of, especially those who need a hopeful conversation in the realm of fecal incontinence therapies.  If you are considering Interstim therapy, and would like to talk with myself or another Interstim Ambassador, use the following link to sign up.  Interstim Ambassador Program  I look forward to hearing from you.

Thanks for reading,

Lauren

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