Wednesday, May 9, 2012

Surgery punch card... Next one’s free!



When I was 13 I felt a new and scary pain that my young, unsophisticated, and N*Sync obsessed brain couldn’t process. I just kept saying to my Mom and the doctors that my “stomach” hurt. Of course they did lots of tests and sent me to a gastroenterologist who decided to do a colonoscopy and endoscopy… which is where they send a camera on a voyage to my tummy through, um, both passage ways. They did the procedure at Mary Bridge Children’s Hospital so they let me have my Mom in the procedure room until I was asleep. Then in some morbid way of making me feel in control they let me inject the anesthetic into my IV. I looked at my mom and said “oh, it feels…” then I literally passed out. My Mom starting crying in her minimalist hysterical way and the staff assured her every thing was fine and she went on her merry way. Who knew that was just the beginning of being put to sleep like a friendly yet aged golden retriever.

The next stop was a gynecologist who decided that I must have severe endometriosis. So they decided to do a laparoscopy where they make 3 little incisions- 2 on the bikini line and one in my belly button, then they go in and check out my girly innards. Turns out the kindly, intelligent doctor was correct, I had severe endometriosis. Once again I will use my non-medical and always quirky Deni’s Medical dictionary to define. Endometriosis is a disease in which pesky, uninvited cells attach themselves to the ovaries walls and flourish, wrecking havoc in their wake. (This is strange because I tend to kill any plant I come in contact with but call me Farmer Deni when it comes to growing painful rebellious cells!)

Around this time I started noticing pain with urination and they schlepped me off to an urologist who also needed to put me under for diagnosing purposes. So he performed a cystoscopy to check out my bladder up close and personal. This one they went up my urethra with a camera… fortunately I was asleep for that one as well…

Turns out… that Dr. was a chump so we moved on to greener pastures and after shuffling around we finally found my beloved Dr. Karny Jacoby based in North Seattle. She never doubted a word I said and agreed with the chumpiness of the last urologist so she decided to do another cystoscopy… this time she knew what she was looking for and diagnosed me on the spot with interstitial cystitis.

So from this point on we had our mission… Treat Deni’s IC… we just didn’t know how. After trying every non-invasive and relatively easy treatment Dr. Jacoby decided to bring out the big guns and implant an interstim device, which is a little pacemaker looking thing that is implanted in my lower back with wires that stimulate my sacral nerves to help with incontinence, frequency and urgency.

That step was a huge one that involved lots of little steps… first they installed a temporary trial one that had a wire coming out of my side and attached to a little external machine for a couple weeks. Then when I decided I could live with it they went in and placed it in permanently along with a matchbox sized battery pack. Each surgery they put me to sleep for the slicing and dicing then wake me up so I can tell them where I feel the stimulation. Usually they give me great drugs that make me forget it all but unfortunately a couple times it hasn’t worked and I have been scarred emotionally by what goes on in that OR when they think you’re asleep…

At first I thought the interstim may very well be the ticket! It seemed to help a ton but those tiny wires (or leads as they’re called) are placed so perfectly that my clumsy self tends to yank them out of place frequently. So after that I had 4 revisions surgeries to put the little leads back in their exact, perfect spot.

Then in 2008 I started having all sorts of extra pain and went to my gynecologist again. (I was starting to get very familiar with the common species of fish in waiting room aquariums by this point.)  He decided to perform another laparoscopy to check out my ovaries and laser off any more flourished growth that might have crept its way back. This was the surgery that he diagnoses me with level 4 (out of 5) endometriosis. I’m just saying… if this was the Olympic, I wouldn’t be complaining about that score! USA, USA, USA!

The year after that I decided to go for a nice innertube ride behind the boat and knew instantly after hitting a wave I was in for another surgery. This time when we went to break the bad news to Dr. Jacoby she brought up the idea of going “bilateral” or in other words… getting a second interstims. So we did another revision on my first one and she added the temporary tail while she was in there. Then just like clock work, two weeks later I was back in to get the permanent one installed.

I managed to keep them in check for 6 months until I was sent back to my friends at the OR for a revision on my new interstim. Then just a few months after that… I was back in for a double revision… which was NOT an enjoyable experience having both sides operated on. I was forced to lay flat on my face for a week until I could manage to lie on my side for a few minutes.

Just a few months after that surgery I found I was pregnant! So my next surgery was a scheduled c-section because of all the perfectly tuned wiring running through my body they didn’t think I should attempt labor. Then 2 months after I had my angel baby I was back in my home away from home to reposition the interstims after my fat pregnant body and kicking fetus destroyed their placements.

Just when you think you couldn’t take another surgery (tell me about it) there is one more… Do to losing a bunch of weight after having Titus and possibly doing too much too soon after the last surgery my faithful Dr. was slicing me open and fixing me up once again!

Sheesh… so that’s it! My list of surgeries… More are inevitable and my Dr told me that they even have new technology coming out that would only require one battery so less incisions and therefore shorter recovery, that’d be nice!

Also coming up is the dreaded hysterectomy that has been leering since the day of my endometriosis diagnosis 12 years ago…   I hope to pop out another baby before that day but either way I know that my body will have more scars from incisions and stubborn IV’s. I will probably have more foreign objects tossed in my body like that junk drawer that you find your missing marbles in.

Surgery is always hard on me… the anticipation, the surgeries when I’m forced awake to guide, every recovery, the narcotics after surgery and the process of getting off those narcotics… and then as of the last 2 surgeries… the not being able to pick up my sweet baby boy or take care of him or nurse him.

Every surgery I go in thinking “this is the one!” thanks to all the support and motivation from my loved ones… and I go out thinking “this better be the one, I’m never doing this again. If this isn’t it, heads are going to roll!” I know if I stopped being positive I would break down… so I know these surgeries are worth it and its all part of the IC game!  

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