I’m coming out of retirement for a minute. I have to set
something straight and instead of continuing to write posts trying to sum up
everything I thought I would just write one more blog…
I have a problem. Somehow after all this mayhem and
ridiculousness I have gone through I have been placed behind thick Plexiglas
and put on display as if a scientific marvel at a museum. People who have been
battling hard with IC suddenly see me as the “lucky one”, the “survivor”, the “one
who conquered IC”. They think I’m living this grand life now that I “don’t have
IC”. Now that I’m “healed” I get to live this life that we’ve all wanted to
since they day we were diagnosed.
I’ve tried to be open about my hardships post-op but they
don’t want to hear it or believe that it could be any worse than what they’re
going through right now. They’re sure that what I’m going through is “for a
purpose” and is “just temporary” and will be “all worth it soon”.
So I’ve stopped talking to people with IC frankly. I love
these women so much. I was one of them for so long but I was being
unintentionally put down and shunned by them. Some of them still cared because
we had built a relationship outside of our diseased bladders but the majority
either didn’t care anymore, just wanted to know how things were going for their
own purposes, or… this is the best… were jealous of me.
Anyone who has been close to me throughout this horrific
recovery, which admittedly isn’t many people, know that there is absolutely
nothing to be jealous about. My lovely naturally wavy hair that usually does
itself- sure. My hardworking, good looking hubby- you bet. My ability to make
fried chicken to rival any Grandma- now we’re talking. But why in the world
would anyone be jealous of my current life, I have no idea? The only thing. I
mean the ONLY thing that the women on the other side of this disease have to be
jealous of me about is that I can eat whatever I please. BUT. I’ve been so
incredibly sick the last 4 months that I haven’t been able to enjoy eating at
all. More on that later.
When I was miserable and waiting completely impatiently for
surgery I talked very highly about the life after surgery, I basically plated
it in gold and hung it on my wall to give me strength to get through what I
needed to. So maybe these women think I’m living the life I wrote lavishly
about, the life I still dream about having some day. Maybe they truly just don’t
understand…
The thing is… This surgery that I had almost 4 months ago
has a huge recovery that lasts anywhere from 6 months to a year. I’m not even
close to the finish line right now. Each day I have improvements, stalls,
setbacks, re-do’s, triumphs, failures, new goals, new hopes, and new focus. It’s
not all bad but that doesn’t mean it’s all good.
Even a year after surgery, even two years after surgery, I
will not be normal. I will not be this lady who once had IC and was miraculously
cured. I will be a lady who doesn’t have a bladder, who got out of the war of IC
alive but who lost her bladder. I will wear a bag every single day for the rest
of my life. I will worry about my stoma and my skin around it every day. I will
stress every pound gained or lost for fear of it affecting my stoma. I will be
aware of each ounce I drink, hoping it’s enough. I will have my bag fail,
because after all it’s just plastic, and my stinky, mucus filled urine will spill.
I could keep going but I have more to say about other things…
I was diagnosed with IC when I was 14 years old and for 12
years I was in pain and dealing with the crazy symptoms every single day but no
matter how horrible it was it didn’t fully consume my life until this year. It
was December 30, 2013 that I had my interstims removed and botox injected into
my bladder. I woke up from that surgery and was never able to pee on my own
again. My bladder stopped working. At first I tried catheterizing myself but it
kept getting stuck and I would have to rip it out shredding things on the way
out. Then I had multiple foley catheters, the basic kind you have at the
hospital, that caused several, severe bladder and kidneys infections. Then I
had a suprapubic catheter placed. It went straight into my bladder through my
bikini line area. It wasn’t anchored or sewed down in any way so each time I dropped
the pee bag I toted around it literally tore the hole it was coming out of, if
I moved the bag wrong the urine made a hasty return to my bladder, and the
inside of my bladder was aggressively damaged by the part of the tube that was
inside.
Each of those methods had their benefits and downsides. They
all caused indescribable, white hot, stars twinkling around my head,
breath-taking pain. My bladder had finally failed me. It was not functioning in
any way. After 4 months of trying these alternative urine draining methods my
doctor and I knew that my body couldn’t handle much more. I was taking more
narcotics that anyone could believe, I was in bed 98% of the time, I couldn’t
take care of my son, I couldn’t leave the house… my bladder had not just died but
it was taking my life with it. I was alive and most likely it wasn’t going to
kill me, unless there was an uncontrollable infection from all the catheters,
but each day I was losing my life a little bit more.
So my wonderful doctor admitted she had done all she could
for me and sent me to the University of Washington to the premier Urologist in
the state for bladder removals. He primarily treated patients with bladder
cancer and was kind of taken aback by me at first. He didn’t know what to do
with someone who needed their bladder removed when it wasn’t really trying to
kill them. So he listed several risks and reasons NOT to do the surgery and
then sent me on my way to meet with some other specialists to verify that this
was truly my only option and for me to get more information.
I did as he requested and then came back a few weeks later
even more desperate and terrified. I went into his office not sure what he was
going to say but after consulting other specialists and thinking about it more
he knew that although this disease wasn’t truly going to kill me, I wasn’t
living. I was so young, just 26, and I had so much life to live and I could not
spend the rest of my life how I was. He and his medical team realized it wasn’t
a question of if I was going to have this surgery, it was a question of when.
Removing my bladder was my only option. I had a dead organ in my alive body and
we had to remove it.
There was no convincing needed from either side because it
wasn’t a question of opinion. This needed to happen. It wasn’t to better my
life or relieve my pain, it was to continue my life.
Fast Forward to today, almost 4 months after surgery. I
haven’t had any of the life threatening side effects that are always a possibility
with this huge surgery. Yet it’s been the hardest thing I’ve ever gone through
in my entire life… Just imagine what it would be like if any of the major risks
would have happened….
Adjusting to my stoma and all the urostomy things has been a
challenge. There is so much I still don’t understand and each time something
weird happens I freak out until I find out whether it’s normal or not. The
stitches just dissolved around it recently but before that, every time I
cleaned the area it would pull them. I am still trying to find a wafer that
works with my sensitive skin so it constantly feels like I have duct tape over brand
new sunburn. I’m always having issues with my bag and my night bag connection
and I spill urine almost every time I hook and unhook to it. I have to clean my
bed bag every day, change my bag every 3 days (assuming everything is going
well) and drain it several times a day. I am still learning the best way to do
it all. My urine reeks to high heaven and is full of mucus because the piece of
intestines that they recruited for the conduit still thinks it is intestines so
it creates a disgusting thick egg-y junk that clogs my bag. Plus I still hate the way my stoma looks, I
stare at the pulsing piece of intestine sticking out of my stomach with the
chunky, mushy urine coming out and I am repulsed by my own body.
One of the biggest risks of this surgery is having bowel
problems and that is one thing I have dealt with in full force. My digestive
tract is still so annoyed with being messed with that it throws a great temper
tantrum regularly causing severe abdominal cramping, constipation, diarrhea,
and blinding nausea. This started the day after surgery and is still blazing
with full force. I will be minding my own business when BAM it comes on out of
nowhere having my running to the bathroom or bent over in agony.
When they removed my bladder they also removed my urethra
but were able to save my vagina. However... in doing so… they had to use the
roof of the vaginal canal to stitch shut the area that was once my urethra. The
pain in my pelvic floor is still, 4 months after surgery, way worse than it
ever was before surgery. It’s different but worse. I can’t sit in a normal
chair or wear underwear without severe pain. Recently I started having green
discharge that I thought was stitches coming out but it hurt so incredibly bad
that I got it checked out only to find out I had a bad infection down there and
it was some kind of weird calcified bacteria. My whole vulva and vaginal area
is covered in irritation and open cuts leaving the whole area just raw.
Since I’ve basically been bed ridden for a year my muscles
have weakened to an extreme level. So when I started doing physical therapy I
had to relearn to walk. I also have been in pain for so long that my muscles
are so tense we have to retrain them to relax. My body is so used to pain that I
flinch at the very lightest touch from anyone. Each week we make some progress
and then something happens… like this vaginal infection… that sets us back a
few weeks. The most I’ve been able to do is do some stretches on an exercise
ball, work on my balance, start strengthening my core, and just get me used to
moving and touch again. I’ve been doing physical therapy with an amazing
therapist who knows what she’s doing for 4 months and we are still really just
at the beginning of my treatment.
Just this morning I laid in my bed curled up in a ball
hurting literally from my toes to my neck. On Sunday we had my family over for
my son and my Dad’s birthdays so I pushed my body hard and I’m paying a high
price for it. My muscles ache, my back keeps slipping out of alignment, my toe
curl up and my shoulders are at my ears from tension, my stoma throbs, my
vagina burns and aches… It’s so overwhelming. It all hurts so badly and I have
such a long way to go.
I could go on and on and on and on and on but I think you
probably get the picture. This recovery really sucks.
I hate this.
I hate every single day.
I think about if this was the right decision and even though
I truly had no choice I still wonder what would life would be like if I didn’t
do it.
I’m not cured of IC… IC just beat me. I lost to it. It
battled 13 years for my bladder. Finally I gave up, IC won and took my bladder
as it’s prize.
So don’t you dare say I’m lucky, that you would give
anything to find a doctor that you could convince to take out your bladder. Don’t
even say that I made a brave decision. I didn’t. The word “decision” implies
that I chose this and I didn’t. If I had any other option I would have taken it
in a minute.
I don’t care that I can drink wine and eat salsa because I
don’t even want to go down the stairs to the kitchen, much less eat!
Don’t get confused by my pictures on facebook of me looking
healthy and normal. I’m still in bed 75% of the day and have to force myself to
push for my family and my sanity. Every moment of every day is hard.
I left the world of IC because I was sick of being put on a pedestal
and becoming a mascot for bladder removal. I wouldn’t encourage anyone in the
world to do this until it was absolutely necessary. I’m talking… until you can’t:
get dressed, drive, be home alone, go a few hours without heavy narcotics, pee
on your own. Hold onto that bladder and to hope until you literally cannot any
more. Find a doctor you trust with your life and if they say you aren’t there
yet then celebrate! Live when you can. Wear whatever you want because you don’t
have a bag full of stagnant, rancid, chunky, mucus filled urine hanging off of
you.
I’m not saying that IC is better than this life I’m just
saying it’s the same. So don’t make this MAJOR decision lightly. Don’t treat it
like a bad tooth that needs to be pulled. This is an organ you need and use all
day long and I guarantee as much as you hate it, you will miss it when it’s
gone.
To save myself from being driven further insane I have
decided to leave all the IC groups and separate myself from that disease that
conquered me but don’t you dare think that it’s because I’m living a charmed
life. Don’t end up where I am until you have to be. Make this decision very
carefully and thoughtfully and do not think that once your bladder is gone you
will live a normal life. Make sure your support system is ready for the new
strain, new pain, new heart ache, new disgust…
.
..
…
(I hate writing blogs like this one… full of negativity and
horrors but someone had to talk about the realities of this major, life
changing side of effects of this surgery. I love all my readers and want all
the best for every person with IC. I continue to pray that there will be a cure
or even an effective treatment for interstitial cystitis.)
After posting this I recieved quite a few angry or confused message from IC patients so I clearly need to clarify further.... This is NOT directed at any one and I’m not mad at anyone for saying
anything. I just get concerned when people say certain things because it makes me think they don’t
understand what a HUGE, life changing thing this is. I don’t want people to
think that you can simply get your bladder removed and then POOF! You’re
magically healed! That’s so not the case. I appreciate all the love, support,
care, and concern from every single person in the IC community and even if I
get miffed at times about little things I still look at my time with all of my
fellow IC sufferer’s as a very positive and healing experience. Like I said in
the beginning of this blog… Some of the friends I’ve made through the support
groups are friends that will stand the test of time and life changes. I
treasure those relationships because they are about so much more than our
similarly diseased bladders. Again, I really meant this blog to be helpful and
informative, not condemning or shaming and I hope that it will be received as
such! Love to you all!!!!
