Archive for The Incontinence Issue

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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And this is why….

As you may have noticed, I have taken an extreme hiatus from chronicling my life and progress on my blog.  For whatever reason, be it moving houses , start of school year, 2 darling children that want their mother all the time, or starting a new job, my blog has been neglected, severely.  Regardless of the reason, I have found lately, that it’s been all too easy to ignore this part of my life.  Until today.

Today, two very important things happened in my life. 

1.  The bubble I’ve created around myself, the bubble that has existed as one of joy and wholeness from a fully functional Interstim device, has been shattered.  Sadly, while doing a seemingly uncomplicated water aerobic move I felt a snag, then a jolt, then a series of shocks in the area of my implant.  Upon further inspection, which included a week of me messing with programming, I realized today through x-ray images that my wires have moved.  The incontinence is BACK, the pain of a failing implant is severe, and my mood is sour.  Fortunately, all was handled expertly by my Medtronic Representative and rectal surgeon who have assured me that swift surgical repair of the wires will restore my functionality. Additionally, reprogramming of the device until surgical repair has offered some sense of relief.  And I realized, this is why.  This is why I need to continue to chronicle my own journey.  The incontinence never goes away.  This is a chronic problem.  A chronic problem with a wonderful solution (Interstim), but a chronic issue nonetheless, one I will struggle with, for the rest of my life.

2. Today I responded to 2 e-mails.  E-mails from women who have sustained incontinence as a result of nerve damage.  Women who are happy that they have found my blog in their quest for validating their own journeys in unfamiliar and terrifying territory.  And I realized, this is why.  This is why I write my blog.  My blog offers me solace, and it offers other people a hopeful message, an understanding,  and peace while dealing with incontinence issues, mental illness, and birth trauma.

 

And this is why, why I will continue to write.  Thank you for today, in validating my purpose and the purpose of this blog.

 

Thanks for reading,

Lauren

99 Calls

99 Calls.  As of next week, including my scheduled calls, I will have placed 99 calls as a patient ambassador for Medtronic.  In a little less than two years, I have spoken with 99 people regarding my experiences with Interstim.  99 “official” conversations about fecal incontinence have been expounded upon in an open and honest manner.  99 conversations that, prior to 2008, I could have never imagined having.  99 conversations that, on average, are 30 minutes a call, that’s 2,970 minutes, 49.5 hours, a little over 2 full days of talking about an issue that is stigmatized, traumatizing, and devastating to many people.

Modesty aside, I can say, I feel good about that.  I feel great that I am able to do something, able to help people at the time where they are questioning their future with fecal incontinence.  Able to alleviate fear and provide a sounding board for life’s stresses with fecal incontinence.  I feel as though I am providing a service that I so desperately craved at my time of decision, at the time where I was wallowing in the woes and uncertainty of a future filled with severe fecal incontinence.

The most amazing thing for me, however, is that 99 calls is just the tip of the iceberg.  The bowel disorders support group that I facilitate, the multiple e-mails I negotiate from my blog, and the conversations I have with people face to face all serve to get my story out there in an effort to let people know they are not alone! To date, this blog has been viewed over 17,500 times.  It is hard for me to even wrap my head around that number.  It is hard for me to imagine that those 17,500 + views have hopefully helped someone by educating them about my experience and hopefully provided empathy for the viewer’s individual experience.

I am grateful for the opportunity to share my story, and I invite you to pass it on.

Thanks for reading,

Lauren

Living with Chronic Disease

At our most recent support group, we discussed living with chronic disease.  Our guest speaker, a mental health professional that focuses on chronic disease, was extremely helpful in guiding our conversation.  I guess it’s difficult for me to think of my condition, of fecal incontinence, as chronic disease.  However, as with most bowel disorders experienced in our support group, the waxing and waning of symptoms throughout my life would define it as such.

Chronic disease and it’s impact on mental health can be severe.  As I have shared before, mental health professionals and therapy were pretty heavy components in my healing journey from both the physical and mental ramifications of the birth trauma.  In dealing with a condition day after day, a condition that is chronic, one needs to supplement their mental fortitude with strength from others as well as within.  It’s not easy for me to know that I will be fecally incontinent for life.  However, the facts remain that my sphincter is damaged, and without medical intervention, like the Interstim, I would be completely incontinent of feces.  The fact remains that to this day I have good days and bad (mostly good), as well as a medical device that contains a battery that will have to be changed throughout my lifetime.  The fact remains that I continue to have diet modifications, as well as, pelvic floor exercise suggestions that I am supposed to follow on a daily basis.  The fact remains, I am living with a chronic disease, that, although manageable, can alter both physical and mental outlook.

So, what do you do when you realize that you are living with a chronic disease?  According to our speaker, the number one realization that you need to make is that your mind and body are connected.  So, even though your mind isn’t “causing” your physical body ailment, your mind can alleviate some of you physical symptoms, or in turn, make them a lot worse.  Emotional distress can be the very thing that contributes to chronic disease symptomology getting physically worse.  By recognizing this fact, often in treatment, one can pay attention to emotional stressors, thereby problem solving and potentially increasing tolerance for the emotional distress so as not to have it manifest itself physically.

Too often, our anxiety about a chronic disease creates a negative feedback loop that, in turn, creates real physical problems, exacerbation on the underlying chronic illness.  It is only in recognizing this phenomenon that we can continue to heal our minds, in an effort to live with minimal disruption of chronic disease.

Thanks for reading,

Lauren

My “Adult” Movie

Recently, I had the distinct pleasure of engaging in a video shoot for Medtronic Interstim device for fecal incontinence.  This video will serve to bolster Medtronic’s website for fecal incontinence by providing a real face, and story, to the issue.  In coming to my hometown, Medtronic was able to interview me, my doctor, and my family, and capture the impacts on all of our lives from this phenomenal device.

After giving authorization, my family was included in the taping of this promotional video.  In basing this video in reality, I thought it important to give the go ahead for my family to be portrayed.  When trying to explain to my 6 year old daughter what the purpose of this video was, I found myself stumbling over concepts she may be too young to understand.  When asked the question by my daughter, “Will this video be on TV for us to see?”  I was able to give the easy answer of “No, it will be on the computer, on a website.”  When asked the question by my daughter, “Will my friends be able to watch me?”  I was able to answer, “Well it’s like an adult movie.”  In summation, my daughter concluded, “Oh, OK, so we are making an adult movie for the computer website…cool, can’t wait to tell my teacher.”

UH Oh.  Adult movie, computer website.  I am seeing here that she requires more clarification.  I show her my scar and proceed to tell her that the video is about “mommy’s surgery” and we will help tell others that need the surgery that they can get it and be happy and healthy families.  Phew, bullet dodged.  Although, frankly, sometimes talking about incontinence does have the same stigma as talking about “adult” movies.

Thanks for reading,

Lauren

It’s just not funny

Recently, I came across an article about a woman who lost her job due to incontinence.  The headline reads: Opera Singer Can’t Stop Farting After Surgery, Loses Job.  The woman, who suffered a botched episiotomy at childbirth, now endures incontinence issues such as uncontrollable loss of gas and feces.  She is suing the hospital due to loss of control, and subsequently, the inability to perform as an opera singer, her occupation.  As someone who also, ultimately, had to leave her chosen profession due to incontinence and birth trauma issues, I relate to this woman on a very personal level.  I applaud her ability to pursue legal action, and I admire her for going public with this very real, and very embarrassing issue.  I was initially introduced to this story via my Facebook feed, but then dug around for other news outlets carrying the story.  Largely listed under, “weird news,” and on the news feed “gawker,”  I now find this story to be listed in the media as a joke. Well, guess what, it’s just not funny.  Nor, is it “weird news.”  The fact that the media needs to portray an article like this under “weird” eliminates it’s ability to become a mainstream health issue.  Furthermore, the comments listed as a response to these articles are largely littered with middle school level jokes and puns about poop, farting, and loss of control.  So, congratulations media, for making a mockery of a very real problem for a lot of women, and also, creating an outlet for those wishing to relive their middle school years with crude wisecracks.  I’m not laughing.

Thanks for reading,

Lauren

Speaking UP!

Living with a bowel disorder is not easy.  In fact, it can be downright awful at times.  Besides the obvious physical discomfort, emotional stress is rampant.  As an ambassador for those suffering with fecal incontinence and a support group facilitator for those with bowel disorders, the theme of negativity around incontinence is a prevalent one.  In fact, I urge you, if you are NOT suffering with incontinence, to imagine a day when you may be.  Can you imagine how incontinence would impact your daily life?  I wrote about my experiences in-depth in this post here.  Can you imagine how leakage, urgency, physical pain in the rectal region, would change your outlook on your day to day, hour to hour, minute to minute happenings?

Remaining positive when dealing with your own bowel disorder is difficult.  Oftentimes, bowel disorders lead to increased isolation, as the individual suffering refuses to share such personal information, and/ or feels uncomfortable leaving familiar areas.  Often, people go years, even decades, before opening up about their incontinence to anyone, including health professionals.  This suffering in silence wears down a person, physically and mentally.

It’s time, as a society, to stop being afraid of talking about fecal incontinence.  Let’s not allow “pooping your pants” to be a punchline.   It’s time to create a safe space to identify, share, and discuss incontinence.  Only then, will people truly seek the treatment they need, and deserve.  And, guess what, I don’t mind starting the conversation.

Thanks for reading,

Lauren

The first step to Wellness

Navigation of treatment is one of the many obstacles that an individual faces when dealing with trauma.  In both physical and emotional trauma, the simple confession, if you will, to oneself of one’s situation needs to be the very first step.  Admitting to yourself the need for help is one thing, but sharing your problem with another is often extremely difficult.  Unfortunately, when dealing with stigmatized trauma, such as mental illness and incontinence, the essential step of sharing one’s difficulty is often never mastered.  It may not be achieved for years.  However, once you are able to discuss your physical and emotional traumas with another human being, you have made a great leap into treatment.  Talking about your worries is crucial to treatment.  My treatment model followed the following path over the course of 3 + years:

1. Admit to myself that something was not “right” with my incontinence. Talk with my husband, Talk with my mother. See my OBGYN.-Unsatisfied with results. See a new OBGYN-Unsatisfied with results.  See another new OBGYN. Diagnosed with fecal incontinence. See a Gastroenterologist. Begin Physical Therapy.  See a Rectal Surgeon.  Have extensive testing on the sphincter.  Discover exact defect.  Enter specialized Physical Therapy.  Admit to myself that something was not “right” with my brain.  Talk with my husband.  See my OBGYN.  Get prescribed medication.  See Cognitive Behavior Psychologist.-Unsatisfied with results.  See EMDR specialist. Diagnosed with PTSD with related anxiety disorder.  See a Psychiatrist for medicine management in conjunction with EMDR psychotherapy.  Leave work due to PTSD, anxiety and incontinence. Rectal Surgeon prescribes new treatment for fecal incontinence.  Have Interstim therapy implanted. Discharged from Physical Therapy.  Discharged from Psychotherapy. Titrate off of medication.  Cleared to go back to work.

As you can see, for me, admitting WAS the first step on a journey that would take over three years to travel to wellness.  However, I continue on my wellness journey daily and to date it looks like this:

Start a blog, continue blogging, become a patient ambassador for Medtronic Interstim, become pregnant with second child, turn off Interstim implant, experience setbacks with incontinence and pelvic floor weakness, attend Physical Therapy, have second child, experience wellness with incontinence once Interstim turned back on, facilitate a local support group for bowel disorders, get a part time job.….be engaged daily with a life that seemed unimaginable in the immediate aftermath of trauma….

You can do it too.

Thanks for reading,

Lauren

 

 

A Gathering

About a month ago, I was asked to facilitate a support group specifically geared towards those suffering with bowel disorders.  This group is the first of its kind in my area and I am humbled and honored that I was chosen to lead this gathering of individuals with similar issues.  Honestly, even with the outreach to individuals telling them about this group, I was hesitant to think that we may have a large turnout to this type of meeting.  It is an unfortunate truth that many individuals afflicted with bowel disorders remain silent…not because they necessarily want to, but more because society stigmatizes the ability to talk freely about issues such as these.

With great pride, I am pleased to announce that between 15 and 20 individuals showed at the first meeting.  Brave individuals who summoned the courage to share their stories, listen with an open heart and mind to others, and work with me to shape future gatherings into meetings that are both productive and encouraging.  I am truly blessed that I have been given the opportunity to facilitate these meetings.  I am excited about the possibilities of shattering societal stigma, beginning with the small group dynamic, and spreading out into the general public by raising awareness of these very personal issues.

Thanks for Reading,

Lauren

How To: The Konsyl Corner

In an effort to remain supportive and informative to those needing and requesting some of my fiber secrets, I’m dedicating a space on my blog to Konsyl.  What is Konsyl?  It is a fiber supplement that was recommended to me by my rectal surgeon.  I take it every day and it allows my bowels to work in harmony with my Interstim implant.  I have found this supplement provides me an easy way to incorporate additional fiber into my diet without ingesting large amounts of food.  Through daily exploration, I have found some pretty tasty ways to make Konsyl a part of my daily routine.  If you, like me, need to up your fiber intake, I invite you to try Konsyl as a way to get what you need.

My favorite Konsyl recipe:

8 ounces Vanilla Almond Milk

5 Frozen Strawberries

1 Teaspoonful Konsyl (Original Formula)

Place Vanilla Almond Milk and Strawberries in Blender. Mix until smooth.  Add Konsyl.  Mix until incorporated.  Drink Immediately. (It is important to drink any Konsyl beverage immediately due to the nature of the psyllium fiber-read warnings and instructions on supplement directions)

I hope to add more Konsyl recipes here in the near future.  For now, I encourage you to start adding fiber to your diet, regardless if you “need” to or not.  For more fiber recipes, check out this Bran Buds post or this Bran Buds post.

Thanks for reading,

Lauren

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