This one is for my fellow IC sufferer's who are reading my blog, which by the way, when I started writing this my dream was to have other IC'ers read but I can't believe its happening and reaching so many of you! Thanks for reading!
The unique and troubling thing
about interstitial cystitis is that each case is completely different. That
makes it really hard to accurately diagnose and properly treat. When I was
finally diagnosed the first thing we asked was, now what?
There is no cure for IC. It’s a
hard pill to swallow… pun totally intended…. But it’s true. There are several
treatments and coping methods but it is some thing that is as much a part of an
IC sufferer as their big nose or loud honking laugh (okay maybe that’s just
me).
One of the first things they
recommend for urinary pain is called pyridium. It’s a little pill you can get
over the counter and turns your urine a shocking, Easter egg dye orange. It’s
supposed to ease pain, burning, and can reduce urgency/ frequency… It doesn’t
really help me and make me feel like I had teletubby. However, it’s harmless so
definitely give it a try!
The first oral medication the
doctor prescribed me was called amitriptyline and is actually an antidepressant
but some times reduces pain and relaxes the bladder. I, personally, saw no
difference from this but I continued taking it for years with no bad side
effects.
Then the big oral mamajama is
Elmiron. It is actually the only FDA approved medication for IC and has been
known to restore and protect the bladder wall from that poisonous urine. I, as
luck would have it, am severely allergic to this particular drug and wasn’t on
it long enough to find out if it would help.
Another some times effective treatment
is a cystoscopy and bladder distention, which is a procedure that they send a
scope into the bladder to check things out, get rid of any ulcers and stretch
the bladder with gas or air. I did have this procedure but since frequency
isn’t one of my issues it wasn’t worth all the trouble!
Speaking of voyaging into my
bladder… another typical treatment of IC is sending a catheter up the urethra
and releasing medication in there. I imagined it like a bug bomb... I had to
visualize some thing annihilating and evil to get through the torturous
procedure. The medicine they place in
the bladder is known as DMSO. They use a smaller catheter first and inject
lidocaine along the way to hopefully numb things up but that does practically
nothing to alleviate the pain of the boa constrictor sneaking its way to my
bladder. (They actually used the pediatric size because I was only 16 but I’m
going to tell it like it was 6 inches in diameter and don’t you dare say a
word!)
The funny thing about this particular treatment is that the
medication is actually only in your body for 15 minutes and then you pee it out
but the smell stays with you. I wish my Mom could tell you her side of the
story… I tasted a mild garlicky flavor but didn’t really smell any thing. TURNS
OUT… years later she told me, this is a direct quote, “you smelled like some
thing dead from the sea.” WHAT! For those of you that know my Mom you know it
was bad. She has never said a bad word about any one, much less me.
I knew that others thought I smelled fragrant but I had no
idea it was THAT bad. I just texted my sister and asked if she remember what it
smelled like her text back was, “well um let’s start with seaweed, add on
sardines then other rotten things and then steam them up and add garbage.” No
worries about my fragile feelings though, please don’t hold back Jeny… Love you
too.
Now that I am typing this I am being flooded with
realization and offense. I just remembered riding home from the treatment on a
cold rainy day and my Mom having the window open. I kept asking her to roll the
window up but she convinced me she was boiling hot… probably while shivering. Also
I remember being in sheer agony from the process and wanting my Mom to lay next
to me and watch a movie and I’m pretty sure she had a towel over her face the
whole time. Rude.
So! After 6 weeks of once a week treatments and 24/7 stench
the pain was worse from all the catheterizations and I was definitely never
doing that again. BUT, by all means… you
give it a go, I highly recommend you get a nice hotel room with a jetted tub
and tell you’re loved ones you’ll see them in 6 weeks! Unless you’re less
fragile that I was at 16 and don’t mind clothespin nose plugs and sea-like
scent descriptions for years to come.
Another “minimally invasive” (HA!)
treatment is physical therapy. Due to all the muscle tension and general
jacked-upness, (medical term) the goal of PT for IC would be to train the
muscles to contract and relax when they are supposed to. They start out doing
deep tissue massage in the inner thigh and abdomen, don’t start thinking this
is a jolly relaxing massage… it hurts, like being rubbed with a nice relaxing
pair of scissor.
Some therapist even migrate to more… sensitive regions… but
that can hurt more than help so only if they are IC specialists and the patient
has severe pelvic floor dysfunction. They also teach lots of stretches and
exercises to work out the muscles that are too friendly with the pelvic floor
muscles.
My favorite part of physical therapy was the biofeedback.
They would place electrodes around the pelvic flood and watch on a computer
screen the tension at rest and when contracting. It was amazing to see at rest
my pelvic floor muscles were like an Olympians biceps. If only my arms could
get that kind of work out!
The goal of physical therapy is to teach techniques that you
can implement yourself and train those misbehaving muscles… it’s like boot camp
for pelvic floor muscles! It can help overtime but it’s definitely a long road.
I know lots
of people also have regular, relaxing full body massage’s weekly to relieve
tension in the rest of your body that stems from all that amplified tension
starting at the pelvic floor.
Acupuncture
is also recommended a lot but I personally had a bad first experience and am
kind of scarred. The acupuncturist went about her work of making me into a
voodoo doll (most likely of her cheating ex, I’m sure) then left me to, what?
Rest? For like a half hour and in that time dozens of needles were popping out
of my skin at impressive speeds. No thanks.
Also there are the usual… reduce
stress, wear loose clothes, low impact exercise, use baby laundry soap for you
panties, and of course changing your diet. I am planning on writing another
blog about this but one of the best ways to manage IC is by staying on a strict
low acidity diet. There are giant, contradicting lists but the worst are the 4
C’s: carbonated drinks, caffeine, citrus, and vitamin C. Also tomato products,
alcohol, and really most spices are bad triggers
There is a nifty albeit disgusting trick of drinking baking
soda mixed with water to neutralize the acidity if you are feeling risky and
try a new food or just want to splurge. After having IC for 12 years I now know
what I can eat, what I can tolerate, and what I definitely need to stay away
from. It takes adding and subtracting from your diet to really personalize and
fine tune it.
There are
also tons of medical trials and research going on every day for IC and if I
weren’t in such a bad place with my IC I would be first in line to try out
every new thing. I actually don’t qualify for most of them because of my endometriosis
and the interstims plus right now I can’t because I’m still nursing! Last I
heard there was a trial where they insert a pretzel shaped object into the
bladder for 6 weeks that releases a steady stream of lidocaine, sounds lovely
right? Of course with trials you never know if you have the real deal or the
placebo but I would say it’s worth the risk.
Okay… I saved the best for last.
The old faithful interstim… The interstim is a sacral nerve stimulator that is
implanted into the back. It works with the sacral nerves near the spine with
mild electrical pulses. The interstim strikes up communication with the nerves
and the brain to, ideally, achieve control over the bladder and related
muscles. While working properly it feels like gentle tapping.
It requires at least a couple surgeries but most likely many
over years. The surgeries require the patient to be awake and tell the surgeon
and interstim rep where they feel the stimulation. Once they get it in the
right place it can be very successful but I have found it to be very illusive
and sensitive. I am NOT the most active person in the world… I may actually be
the least active person in the world… but I have managed to break or dislodge
many of the tiny wires that are placed in the precise, proper location.
HOWEVER, the only time I have urinated easily was after I
got my second interstim making me “bilateral”. They were both functioning and
positioned perfectly but that only lasted a month or so until things went awry
as they do. I have had more surgeries, pain and heart ache due to the same
machine that has eased my pain, stopped my incontinence all together, and made
me feel normal. (normal as you can feel with two battery packs bulging out of
your back that people like to refer to as garage openers and regularly ask if
the can charge their phone or send a fax through me.)
I don’t know if I would recommend the interstim to a friend
with IC… My latest experiences would lead me to say no. 8 weeks ago I had
surgery after losing weight and doing too much after my last surgery which cause
one wire to get broken and crimped and the other to dislodged from the nerve
completely. They turned them both on in the recovery room. (I only vaguely
remember this because of the anesthetic but I’m pretty sure I answered
correctly in between begging them to let me sleep) From that day on it never
felt great… I turned it down so low I couldn’t even feel the stimulation and I
had more incontinence than ever before. Now they are both off because they kept
shocking me like a naughty barking dog with a shock collar. So I’m basically at
the same place I was 8 weeks ago except now with back pain from the surgery.
But like I said… the best and worst times of IC have been because of my good
friends the interstim. So it’s a risk I am willing to continue making.
An important thing to know about the interstim is that it
has never been for pain… it is designed to help with urgency, frequency,
retention, and incontinence… which if those things are better can in fact
reduce pain.
I wish I
could make this more exciting and uplifting but truly this area of IC is
frustrating and dreary for me. I know there are lots of people out there living
completely normal lives free from pain and symptoms because of a mix of these
treatments. If you are recently diagnosed I recommend trying every thing the
Doctor recommends and seriously giving it a good try, all of these things take
time and tuning to make them right for each patient. Best of luck!
**Disclaimer**
I am literally the least scientific person in the city of Ravensdale
if not the state of Washington .
Try to take my medical ramblings with a grain of salt (I have never understood
that saying… why salt? Oh! I just looked it up… apparently it was known to be
an ingredient to a poison antidote…. Ooooh!) I am just here to tell my
experiences and finagle out some advice from them. I hope you learn some thing and are mildly
entertained while you’re at it.
I had to do the injections with that horrible 6in diamater snake! (even though it was not that big, but for our sake it is!) At least they gave you litocane (sp?) my dr did not give me anything except the treatment. Also I had to have 8 treatments. 3x the first week and once a week after that. AND they did not work for me either.
ReplyDelete