Facing a Fistula

Fistula.  A funny sounding word with a not so funny meaning.  By definition it’s an unwanted connection between 2 organs.  I became a most unlucky recipient of such a connection when my bladder fix went south and didn’t hold up.  My bladder was badly torn during the c-section that was done in February.  I was enjoying one of life’s most amazing moments with my husband and sweet newborn baby when my OB leaned over the curtain and informed me we’d need a urologist STAT.  The urologist saw the mess my bladder was in and I was soon in surgery, taken away from my miracle moment with my new baby.  Thankfully, my baby boy was healthy and beautiful, and from that moment on, my shining star throughout a long and unexpected darkened path.

Flash forward a week from delivery to a me who is feeling better!  I was getting up and around more, with the soreness of my surgeries fading behind me.  I thought all was well and hoped for the best.  I’d had an OB check that day, and was resting comfortably on the couch.  Upon standing an unusual amount of fluid gushed out from between my legs and onto the pad I was wearing.  I waived it off as some type of post pregnancy fluid (of which there are many!) and continued on.  Not until it continued to happen a couple of times every other day or so did I start to worry.  My concerns were disregarded. I called my urologist’s office and they simply chalked it up to bladder spasms or a faulty catheter, throwing medications at the problem and swapping out the old bag for a new one.  My anxiety grew, as did my discomfort with this new and very wet problem I was having.  

The day for my scheduled cystogram came after 3 long weeks of having a catheter.  I was hopeful this was it, the end of my problems…no more catheter was great and it also meant no more “bladder spasms.” My parents were in town for a few days to see the new baby, help me out during my appointment, and to maybe watch the kiddos while Corey and I snuck out for a quick dinner out.  I had high hopes and was looking forward to life sans catheter.  Unfortunately, those few days were some of the darkest I’ve yet to encounter.  My catheter was having trouble draining correctly and even though it had been swapped again, it was only working some of the time, leaving me to more and more random ‘gushes’.  My mom came with me to the hospital for the cystogram, staying out in the main lobby to entertain my Dawson while I was checked out.  The procedure was a nightmare.  I laid there as the clinicians and radiologist injected a dye into my bladder and then watched on the screen to see how it had healed.  The results:  it hadn’t.  My bladder was leaking into my abdominal cavity and seeping into either my vagina or uterus.  As I laid on the table, fluids ran freely out underneath me.  I was horrified and scared.  As I came out to the lobby to see my mom and baby, I sobbed uncontrollably, afraid of the future and struck hard by the fact that my bladder was a disastrous mess.

That night, my catheter was failing 100% which meant I was incontinent 100%(they’d switched it out again during the cystogram).  I felt hopeless and afraid, and I had a newborn to care for.  My husband was beyond distraught with the situation, not knowing if I’d be ok or not.  After having trouble getting a hold of my Urologist on the phone to clue us in on what was next, we sought out an unknown dr.’s opinion on the situation.  My good friend Ingrid had texted me a week prior, telling me there was a dr. she went to church with who specialized in women’s pelvic floor surgeries.  He was a urogynecologist (a specialty unkown to me up until this ordeal).  I had passed it off as a nice gesture, but now remembered she’d sent it and grasped at the info on the text with desperation.  This Dr. called us within an hour or so and talked to my husband on the phone about my history and current situation.  He couldn’t of course give us sound medical advice without seeing me, but helped us understand what could be happening and eased some of the panic. It sounded like a Fistula- a rare condition except for African Women who have long and complicated labors that can cause such a plight.  This Dr., ironically, had experience repairing them including a few a year here in the U.S and many more than that during the week he spends each year in Africa for that very purpose.   My dr. did end up calling later that night assuring us that what I was experiencing wouldn’t hurt me, not physically at least. 

After an appointment or two with both my Urologist and my OB, it was becoming clear to me and my husband that my now mostly diagnosed condition – a urinary Fistula – was not something either of them was used to dealing with. This was especially true of my OB who was off-ish and had little to say to me when we talked except that what I had would not hurt me but was highly associated with a poor quality of life (what everyone wants to hear!)  Corey and I were getting increasingly nervous about the situation, and just days before I was to go under general anesthesia to officially diagnose the type of fistula with my Urologist and OB, we sought a second opinion on the situation thru the Urogynecologist we’d only talked to on the phone.  After talking to him officially in his office, he gave us some good information, and one thing he said hit home…He said if I were his sister or Mom, he would be very concerned with the path we were on (treatment with inexperienced dr.s). That was that.  My friend’s text was no accident.  She had, no doubt, been inspired to send me his name, not knowing of his specific expertise in my exact condition.  I can’t see any other way around it. Less than a handful of Dr.’s had ever seen my condition outside of a textbook.  My sweet friend’s sensitivity to the spirit and our desperation to heed her advice to call him led us to a chance at a successful outcome, the best chance we could have here in Albuquerque, and leaving the office that day we had, for the first time in weeks, hope.

Over several office visits, a CT scan and another cystogram, my dr. arrived at the conclusion that I have a vesico-uterine fistula, a very rare condition that consists of an opening between my damaged bladder and my uterus.  The best chance for a successful outcome includes a 3 month waiting period during which a catheter stays in place, then a surgery to remove my uterus and fistula, and repair the bladder.  

Apparently, this used to be common just about everywhere, but is nearly non-existent in developed countries, and in the U.S since the 19th century thanks to the increased use of c-sections (ironic, in my case of course as this is the cause of my particular type) and better obstetrics practices decreasing prolonged child labor.  Sadly, this is still happening all the time in Africa and Asia where they estimate some 2 million women are walking around with this condition every day caused by too small pelvic cavities due to malnutrition and prolonged and difficult labor. Only they don't have access to an experienced physician, or supplies to keep them dry, or even a catheter to help them manage this on a daily basis.  To make matters worse, in Africa, these brave women are ostracized for it, and are often shunned by their villages, divorced by their husbands.  They are social outcasts, shamed for doing nothing more than attempting to bear a child.  These women don't have a sweet baby to take home in most cases either, as the days long labors they endure equates to a horrifying and helpless condition of urinary incontinence and the baby they hoped to bear perishing in the process.  When I consider all that these women are going thru, my experience is nothing more than a bump in the road, truly.  Corey and I both had talked of these amazing women and the kind of character they must possess to endure such hardship.  I can't even imagine.  Those women are heroes.

 For me, these past 3 months have been interesting, humbling, frustrating, eye opening…words to describe it all are hard to come up with.  Above all, my sweet baby Dawson has been an undeniable balm of joy during some difficult days.  We have been so thankful for a beautiful, healthy baby to make this all worth it.  I’m not sure how I would’ve fared without my baby’s perfect little face to greet me each day.  He is an amazingly good baby, and again, I know that's not just a little luck.  I believe strongly in the fact that God gives us only what we can handle and by giving me the sweetest baby ever I have been able to manage it all.  Dawson is such a blessing to our home and has given me so much happiness.  With his sweet coos and smiles, I've kept on going without too much difficulty.  I feel like I've been carried by my Savior through these past few months too, because I know I could never have waded through this pain and sorrow on my own and come out on top. And yet I have felt my burden lifted, literally.  It didn't seem as bad as I thought it would be,  not by a long shot.  My spectacularly awesome husband has been a champ through all of this, and he doesn't complain, ever.  I know it's been hard on him too and extremely stressful dealing with a new baby and a wife who came home from the hospital broken, and still hasn't been fixed. He deserves one of those 'Father of the Year' awards if they exist out there somewhere. Seriously, I hereby nominate him. With my loving family there to support and love me and my faith in God to carry me through, the time has passed and I've been able to live life to an almost normal level.  

And honestly, if the catheter is working, it wasn't so bad. At the beginning of all of this, I was horrified by the fact that I had to wear a catheter for 3 weeks.  Three months later, catheter still in place, I can see that, as always, its all in the perspective.  I look back now and laugh that I was so freaked out by that, when such a greater challenge lay in store for me just around the corner.  Nope, a working catheter is no big deal, even if you do have to wear long skirts and baggy pants to accommodate the leg bag.  At least you can get out and live a little!  It's when they don't work that it's a real pain. 

So, I'm now looking forward to the future with loads of hope that this surgery will be successful and crossing fingers that I can look back on this period as something that made me stronger and more compassionate for what others might be going thru.  I find myself thankful for healthcare, good friends who listen to promptings, a healthy baby boy, my amazingly stalwart and wonderful husband, and a God who knows how much I can handle.