The patient Patient

You've heard the old joke from a spry old chap in the waiting room at the doctor’s office, "now I know why they call us Patients" followed by an air rib jab, an "eh?", and chuckles that confirm the multiple number of times he's said that same thing in that very room. 

But lord have mercy that little stooped feller probably named Jasper had it right! If we are mere minutes late for our appointment they read us the late/cancellation policy that's posted in hard to miss locations and that we've signed dozens of times. But! We all know their schedules are as loosey goosey as... Well... A loose goose! Yikes! 

I have been forced to be a “patient patient” a lot lately. I have been in IC treatment purgatory for the last month and I am about to start spitting! (Apparently people spit where they're mad? I've never personally seen it except by Daffy Duck but you never know who I might turn into when my kettle gets cookin'... Or maybe a llama but I think they always spit no matter their mood.) 

My beloved doctor has mentioned this new treatment she's been thinking about trying with me for the last few months but since it’s what she referred to as "an end stage treatment" she wanted to be sure she had exhausted all of our other options. The treatment is a medication called Cyclosporine and it’s an immunosuppressant. 

The last time I was at her office feeling a bit defeated and a bit fat from the stupid amitriptyline she realized it was probably time to move to the next step. She handed me a green file (which reminded me of a peachy, who's with me?) that had a checklist of things to do before we could start the medication. 

Let me remind you of my severe lack of medical knowledge and my Internet exclusive education on most IC related topics. Please bear with me as we trudge through the muddy next few paragraphs.  Here we go!

There are some theories that IC is an autoimmune disease. Which I think means our bodies are attacking themselves! Therefore suppressing some of the immune system could hypothetically, potentially, maybe, possibly, help our IC symptoms! 

However we need our immune systems to fight off any bad things that might enter our bodies like infections and germs. So inside that peachy like folder they have a whole protocol with 6 steps that you have to go through before you can start this hardcore drug.

Step 1, receive clearance from your primary care doctor ensuring that you don't have any kidney or liver impairment, uncontrolled high blood pressure or infections, immunodeficiency or any malignancy within 5 years. (Which I don’t have any of those things thankfully!)

Step 2, you must receive the Zoster vaccine. (I don’t need this because I had shingles last year… yes I acknowledge shingles are for old people… tell my body that!)

Step 3, document baseline blood pressure and blood work. (I always have perfect blood pressure, not to brag or any thing.)

Step 4, fill out a bunch of questionnaires about IC symptoms. (I secretly love filling out forms, especially if it’s the kind with the bubbles that you have to fill in with a #2 pencil!)

Step 5, read a bunch of info about the drug and IC. (I apparently haven’t read enough about IC over the last 12 years.)

Step 6, sign the consent form. (After 4 ½ years of marriage I still can’t get my new signature down, it’s just so long my hand cramps half way through.)

SO I have completed step 1-3 and am waiting to hear what to do next from my urologist. I guess I should just fill out the forms and read the papers… hmm one would think I would have figured that out before now… Either way, I am waiting to hear if they got the results from the blood work and if we’re going to move forward in the process.

Meanwhile my new primary care doctor referred me to a pain management specialist. They have sent in the referral two times and I've called two times as well but the pain doctor’s office keeps saying they haven't received any thing. So my doctor’s office is sending it again... Then when they do finally get it they will probably be booked several months out and I’ll wind up patiently waiting for my appointment day to arrive.

So I wait. Do you know how patient I am? Not at all. Ask my sister. (Pretty much any time you are weary and wondering if I'm really as whackadoodle as this blog portrays me to be my sister is a great witness! Oh and also she has lovely ears for flopping if that helps you in a flare, maybe not as floppish as my Moms but definitely 2nd best. Surely I'm not the only one that flops their loved ones ears when they're hurting! Oh, I am? Weird.)

Anyway again! (Oh boy this is a random blog post! What was in that licorice I just consumed! Oh and speaking of that I'm still on the amitriptyline and still gorging away. Only 5 days left! I don't even want to know what weight I am at!)

A-n-y-w-a-y... I'll be here being the perfectly patient patient if anyone needs me... Just doing some whittling or whatever patient people do... Let’s be honest I’ll probably be eating and watching reality TV… (Am I the only one that cannot stand Tierra on the Bachelor?) 

Treating IC without any treats.

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.