T'was The Night Before Surgery...

Good evening!

Not sure really where to start.  I should have started this years ago!  This will be my journal as I learn to deal with the pain of Interstitial Cystitis in a new way.  But first, a brief history:

Back in 2008, I had a bladder sling surgically placed due to increased urinary incontinence.  I had always had it since giving birth to my second son.  I tore - a fourth degree tear - and that began both my urinary and fecal incontinence problems.  Both were rare and just a minor annoyance at first.  As years passed, both problems became more severe.

The bladder sling worked beautifully for about two years, then I began leaking, again. I was told that that might happen.  What I wasn't told was that this mesh device could actually erode  - poke through - my vaginal walls.  And in August of 2012, it did.  That was the beginning of a hell I never knew I would have to endure.  The mesh eroded three times in the course of a year.  That resulted in many vaginal tears.  Tears that had to be repaired. I had four vaginal repair surgeries.  Not to mention the countless urinary tract infections.  Every time I went to see my uro-gynecologist, I tested positive for an infection.  It seemed like I was always infected. I felt like I was about to get my period... all of the time.  For you fellas out there, for me, this felt like a bad heaviness in my pelvis.  But something else, too.  The only way I can describe it is to say that my entire pelvic region felt like it had hot oil inside it.  And this hot pain would radiate down both thighs and circle to my lower back.  Then the hot stabbing sensations would invade my vagina and urethra.  I felt this horrible pain 21/7.  So I did have a few hours of being in less pain.  I had - and still have - pain, 24/7.

I was diagnosed with Interstitial Cystitis a few months ago. Three cystoscopies with hydrodistention proved it.  Since then, I have altered my diet to an alkaline diet.  It's not that easy.  I can't have soy lecithin and that's in almost everything that is baked.  I've started baking my own bread.  Nothing acidic.  This includes

• Coffee - even decaf
• Teas - unless herbal (Not including citrus)
• ALL citrus fruits
• ALL chocolate - except white chocolate
• ALL tomato products
• Pecans and pistachios
• Most alcoholic drinks,  though I consider myself a non-drinker, that yearly glass of wine is now a major NO-NO.

The list is much larger, but those are the major items.

While all of this was happening, my bowel incontinence also became much worse.  That is a horrible condition to have.  It alters every aspect of your life.  If I eat, within ten minutes I must use the bathroom.  If I am out, like say, at the mall, and I have lunch, I know to be near the bathroom.  If I'm not, well, yeah... it gets ugly.  For me, - and I'm going to be very honest in this blog - the more I try to hold it, the faster it comes out.  Back in 2006, I had a pudendal nerve terminal latency test done and that confirmed that my anal nerves were severely damaged again, due to the fourth degree tear when I had my second son.

Part one

My doctor, my husband (and hero), and I discussed getting a device called InterStim.  Think of it as a pacemaker for the bladder, and anal muscles.  Leads will be placed near my sacral spine, exit my body and attach to a little hand-held machine.
 This is "part one" of this procedure.

Part two

If it works, I'll have part two: removal of the temporary leads and replacing those with permanent wires that will be beneath my skin and will attach to the device which is also implanted under the skin of one of my buttocks.

My doctor says that I am a great candidate for this device.  I am willing to try anything at this point.  Oh, and one more benefit:  Though it hasn't really been tested or documented, it helps the pain of IC, significantly.

BRING IT ON.

Tomorrow morning, at 11:15, I will be in surgery to get this device.  I will post when I get home.  I plan on taking photos.  Nothing gross or graphic.  I just want to not only document my experience, but to perhaps help others with IC and incontinence. I, again, plan on being very open, honest, and if need be, verbally graphic.  I want and welcome comments and questions.

Thank you for taking time out of your day to read this.  I hope it can help.  If not you, perhaps a friend or loved-one.

I'm off to get a snack before the clock chimes midnight; after that, I'm NPO (nil per os) or Nothing By Mouth.

Peace,