Interesting Interstim

In 2004 when I had the first interstim test I was excited about this brand new uncharted territory. I felt like there were limitless possibilities. Little did I know at the time that what was supposed to treat my IC would become just another chronic problem.

Over the years the interstim has given me my best IC moments and my worst IC moments. It has helped more than any other treatment but has also caused endless frustration and extra pain. I actually have bilateral (two) interstims and after I got my second interstim my symptoms were practically gone. My family even threw me a “Deni is Better” party! On the other hand that only lasted 3 months and I have had 12 surgeries JUST for the interstims. So when other IC patients ask my opinion on the interstim or bilateral (two) interstims I feel so conflicted.

Let me just remind you that I am not a doctor or any thing relatively close, I just know from experience and some research before I began the process. From what I can understand the interstim is a little device that sends stimulation through tiny wires called leads to the nerves connected to the bladder. The hope is that the stimulation will help control the bladders functions by some fancy magical technical trickery. It has been known to eliminate or at least minimize incontinence, urgency, frequency and some times even pain. 

There are several leads that are all positioned slightly differently as to give the patient options. After the surgery the doctor programs the new doodad to customize the system for the individual patient. They can change the speed of the stimulation, the pattern and which leads are working with what lead.

Here’s where my problem arises… the leads are placed so delicately that if they get moved even just a tiny bit it changes the stimulation drastically. Ideally I would feel it in the perineum area but if the leads move I can feel it any where from my back to my toe and any where in between. So when that happens they have to make a voyage back into my body through the same incisions and fix every thing just so I can potentially have relief until it inevitably moves again.

If you are going to live in a bubble the interstim is perfect for you! However… I got the interstim when I was just 17 while trying to live a normal teenaged life. Now I am 25 trying to live a normal wife and mom life. I have never been super active thanks to my IC beginning at the tender age of 13 but even with my relatively sedentary life its still extremely inconvenient to have a foreign object in my lower back. Here are some pictures of my interstims, you could imagine why it would be hard to keep them save when there in such a vulnerable, unprotected spot. (I can't believe I'm posted these... Proves that I am committed to this blog!)

My masterpiece... don't mind the pudginess. 

My bulging left interstim 

My right interstim doesn't poke as much

Another one of my left... not cute. 

I’m sure you’re wondering what types of incidents would cause this movement… for me it has been endless stupid things… My most shameful time was when I went on an innertube ride behind a boat, after my husbands warning, then hit a huge wave that sent my interstims into spasms. I’ll admit that was my fault but many times it hasn’t been. The interstim battery unit kind of sticks out as you can see in the picture of my interstims below. Once I caught it on a door handle which pulled the interstim and therefore the wires too. One time I fell down the stairs. Another time I got into a small car accident that moved every thing for some reason. Then after my pregnancy the wires moved, after I lost a bunch of weight the wires moved. Recently I was crouched down and stood up quickly the caught my interstim on this thing in the picture. 

Instantly I felt shocks on the inside and swelling at the actual site of the interstim pack. I turned my interstim off with my remote and iced the site immediately. Then this weekend, not two weeks later, I was wearing a dress at a comedy show and bent down ladylike to pick up my stuff off the floor and quickly stood up and caught my right one on the wooden arm rest causing the same reaction. However this time I was in Seattle, an hour away from my remote. I suffered the whole drive home feeling like a naughty yapping dog with one of those collars. I was being shocked all over my perineum area and my back ached where the impact happened.

So now I am still sore from being electrocuted, my back still hurts if I turn the wrong way and my IC is angrier than usual with both interstims off.

Last time I went to doctor my doctor x-rayed and checked my left interstim (see blog “It’s shocking”) and determined it was completely out of place, this was even before the TV tray incident. I had them both so low I couldn’t even feel the therapeutic taps but now they are both completely off and not to be pessimistic but I’m preparing myself mentally for my 13^th interstim surgery.  

In summary… the interstim, like any treatment is a gamble. However in this gamble you are putting a lot down. You are adding machinery to your body, the wires may break, the wires may move, you might hurt the site,  it might not even help at all. On the other hand you also might not pee your pants every day, you might be able to make it to the toilet, you might only have to pee 10 times a day, and best of all… it might even ease some pain. I decided it was worth the risk and continue to make the same gamble every time I head for the OR to get it updated and corrected.

I feel like I am still leaving a ton out but if you are considering an interstim and have any questions please don’t hesitate to ask!

https://www.facebook.com/how.ic.it.by.deni

Request.

My husband likes to reassure me by telling me that IC is my job. If I don’t get any laundry done or don’t cook for a week he just tells me, “Babe its okay, you’ve been really busy at work”. I know that sounds crazy to a lot of you, especially those of you that have full time jobs where you get up at a certain time, have a dress code, drive to work, only have two little breaks and one lunch break, work all day, then have to drive home, and attempt to live life in your off hours.

You would be shocked to know how similar it is… except you get to drive home and be done for the day at a certain time. Even better than that you get two glorious days to do whatever you want. Oh, and you get paid. (Refer back to “The Grass is Greener blog, I’m trying not to compare… just using this as a metaphor).  

This is where today’s blog topic comes in… I have a really busy couple months ahead, like probably some of the busiest months I’ve ever had in my life. So I would just like to request a few days off. Actually if I’m going to try I should really go for the next 2 months off! Surely I’m due 2 measly months off.

The next several weeks would make a healthy, childless, jobless woman stress so you could imagine the panic rising every day. I have a minimum of 10 different days coming up that I have to be out of the shower and active. No choice, no backing out. If any of you know me well you know that’s super scary for me. I like a plan b, I like an out in case I am hurting too bad to function. Nope not this time. People are relying on me. I'm celebrating my little brother's 16th birthday, my Dad's birthday, going to Portland to see my in-laws, Titus' big 1st birthday party, Titus' actual birthday, Titus' one year pictures and then we are moving. Oh man I'm just stressed typing it out... 

There are also days in there that I have things I really need to do, they potentially could be rescheduled but at some point I need to get ready for these crazy 10 days!   

So… the only thing I have left to do is pray my guts out to the big boss man and put in a request for a few days off of pain, incontinence and urgency. I really need this, not just for me, for my family who is counting on me to be a normal sister, daughter, wife and most of all… Mom. 

The craziness begins in 7 hours... 

Bladder Instill (I have no catchy title, my creative juices were drained out of the catheter)

 “Just try to relax… it will hurt much less if you can just relax your muscles.” That’s what the nurse tries to tell me as she pries my legs apart.

I respond: “I’m trying. There, am I relaxed?”

“Kind of…” is all she says.

She proceeds to prep the catheter and medicine then says, “okay ready? Take a deep breath” but my body freezes solid as she inserts the catheter that she promised was the smallest one she had but felt like she was mistaken, it felt huge and covered in blades. She repeats that I needed to breathe and relax but instead I scream, “I can’t do it!”

The nurse forges on and the waves of nausea almost knock me over as the pain thunders on. I hear the urine dripping out of the catheter and she said, “I just need to empty your bladder first.” Tears puddle in my eyes as I silently pray for it to be over.

Every time the catheter moved a tiny bit pain rippled through my body like after effects of an earth quake. Finally my bladder was empty and she injected the lidocaine which burned a little bit but I gritted my teeth and desperately asked “is it going to hurt to take it out?”

I couldn’t look at her but I feel like she probably smiled and answered, “It shouldn’t, at least not as bad as going in. Now shift your hips back and forth to mix it all up.”

As I did the hula while lying on the table with a tube hanging out of my chee chee the pain soared. I felt each twitch of the catheter. Finally the nurse told me to take a deep breath then to blow it out.

As I was doing this she pulled the catheter out and my body literally quivered. It hurt just as bad going out for the record, it was just faster. I laid there with my legs still up in the air and the little paper sheet not covering any thing.

Physically exhausted and shivering from the pain I contemplated allowing myself to black out but fought the pull.

Finally the nausea and dizziness subsided, though the burning lingered, and I tried to sit up but having any pressure on my violated region was too much. I gingerly got down and slowly got dressed. It was over. Now all I had to do was wait for the soothing liquid to calm the fire in my bladder.

This was my first bladder instill in years, my urethral pain had always kept me from repeating the misery but finally my bladder pain was so much that I thought I should attempt it once more. Now here I am 4 hour and a vicodin later and I’ve decided to wait another 10 years to try again. The pain from the procedure is not as intense as earlier but barely tolerable. My bladder feels numb like it’s full of ice water instead of poisonous urine and I’m sore head to toe from being so tense.

Anyway, it was worth a try! If any one needs me, I’ll be in the shower trying to wash away the pain and horror of the day! 

Coulda, shoulda, woulda....

This is totally random but I was just thinking, I can’t imagine having my arm amputated… there would be certain things I definitely could not do. No matter how much I wanted to, it wouldn’t be a choice it would be fact. For instance I definitely could not knit, play the trombone, jump rope, or play quack diddly oh so.

My disabilities aren’t quite as restrictive for sure, which I am very thankful for! There is nothing that I “cannot” do… well at least not due to my IC, my husband doesn’t call me 5 lb muscles for nothing.

Sure… I “could” do all those things… I take for granted the fact that I “could” knit or play the trombone… if I wanted to learn and ya know, be patient.

There are, however, still things I should not do… Things that would cause an instant flare and make me pay for days. Even though I have had IC for 12 years I am still learning what are things that I shouldn’t do, in the past I have learned I can’t ride a jet ski, an innertube behind a boat, ride a horse and this weekend I learned a new thing I definitely should not do.  

What I want to know… if your friends jumped off a bridge, would you? What if there was a bungee cord? What if that bungee cord may or may not be just a couple inches long? All your friends say, “come on! Whats the worst that will happen? You’ll just get a tiny bonk on the head, perhaps a mild concussion! Let’s do it!”  Okay…

So there we go. We launch off the bridge only to watch the ground hurtling towards you, waiting for the reassuring tension to catch, but… it was just a tiny bit too late. You limply swing from the bridge. You made the wrong decision.

All this is to say… I should not, ever, ever ride a motorcycle. My husband got a Harley Sportster about 6 months ago and I have now attempted to ride with him 3 times.       

Each time it not only causes severe pain minutes after we leave but the pain of having my entire body weight resting on my sensitive regions lasts for hours, if not days.

Sunday I decided to give it another try... I mounted the bike and thought if I could shift all my weight to my tailbone it wouldn’t be so bad. So off we went, the first 2 minutes were exhilarating! The warm summer wind blowing in my face, the scary/ exciting sensation of potential death while wrapping my arms around my strong, leather clad husband. (Don’t get me started on the leather… but I guess it goes with the bike.)

When suddenly the pain seared through me like a blazing dagger. I was too scared to shift my weight while on a tiny seat on the top of two wheels going 50 mph. So I sat in misery for another 2 minutes until we got to a stop light and I told my dear husband we needed to head back.

He nodded and flipped an alarmingly tight u-turn and we headed home. Then the pain escalated from my urethra to my bladder… turns out straddling a huge vibrating machine shakes up a decrepit bladder in a very unpleasant way.  As we drove past my friends the Alapacas I thought for sure I was going to pee all over my husband and his precious bike. I focused and thankfully we made it home just in time.

As soon as I swung my leg over the bike I stopped focusing and instantly the pee dribbled down my pants into my shoes. It was a particularly hot day here in Seattle so I stripped down, put on my swim suit and jumped into the pool. The cool water soothed my aching body and reduced the painful swelling. The pain eventually subsided, hours later, but I definitely learned a lesson this weekend.

Just because I “can” do stuff… doesn’t mean I should. It’s not worth it to do these things to convince myself I’m normal because HELLO… I’m not! What normal person swims on a hot day primarily to reduce lady bit swelling??

This doesn’t mean I’m going to stop trying new things it just means I’m going to measure my bungee cord before I throw myself off the bridge. (Some how that’s a really deep metaphor if you dig deep.)