About Chronic Pain & Couch Potato Distraction

 

I thought I'd take a minute to write a little about pain, well chronic pain that is. I don't want to share too much information as my dh always warns me about the internet & dangers of sharing! But, I want to share why I embrace the 'sofatato' handle & am not ashamed of the couch potato label.

  

See, I had a terrible time after a surgery a few years back. (Several Years ago actually) The IV that the docs used after surgery to deliver pain medicine was not 'hooked up' right and all the pain meds went into my skin/arm. They didn't know that until I suffered for several HOURS and my arm swelled up! I cried and begged for relief, but the shook their heads and thought me drug-seeking or crazy. Who knows or cares. Once they realized the one arm was not hooked up, they put an IV in the other arm. Guess what? SAME THING happened again! It wasn't until the late evening (had surgery that MORNING) that the nurses finally found a vein that 'took' the IV and then the meds got in. My hubby is a saint & angel because he sat there with me, reminding me to 'push' the button every few minutes so I'd continue to get relief. (The 'button' only works every 10 or 15 minutes - whatever they set it for).

 

I was so miserable that I vowed to never have surgery again if I could prevent it...

 

Unfortunately, %$# happens and I HAD to have another surgery. (TAH) This time, they were able to provide a little better relief after the surgery. However, they 'accidently' removed a section of my ureter in the process and DID NOT EVEN KNOW IT! They sent me home, still in a lot of pain. I used the pain pills every 4 hours like the label said allowed, but got yelled at by the nurse at the dr's office when I called asking for more because I was in such pain after a few days. She yelled that 'You're not supposed to take that many so soon!" I told her "It says to take up to 2 pills up every 4-6 hours! That is what I did." She snarled that if I was in "that much pain" I should go to the ER.

 

Good thing I guess because that's where they found my Kidney blocked & swollen with urine that could not pass at all on my left side!!! I had to have a tube put in (No pain relief during that procedure either I might add!) and numerous other procedures that week. I got infected & had to stay in the hospital for several days. They were hesitant to say what had happened but they 'thought' the Dr had possibly 'nicked' or 'severed' my ureter, which is common in Hysterectomies.

 

I was sent home with a tube in my back & no spare parts or even instructions on how to care for my new attached appendage - nephrostomy tube. They said a medical supply place would call me & set something up. ? I ended up getting infected severely, more pain, and no answers on how to 'fix' my situation. They said I'd have to get swelling down & they'd try different things to Fix Me.

 

Long story, but I had to keep that darn tube for months! I eventually got new tube supplies and a home nurse that visited to clean it & check me out periodically. I got so sick with an infection that I was hospitalized a couple of times. I was treated by really nice urologists who tried stents & a few other things, but discovered that my ureter was actually missing a whole section! And, it was likely cauterized at one end because no urine was leaking through, um, my tenderparts... The Urologist had a strong idea of who my original surgeon was as he had heard this man had other complaints from patients 'an arm long'! 

 

To fix my problem, I met some nice Dr's at Mayo Clinic. They had answers but my insurance was not compatible. I ended up with a lady surgeon who was pretty mean. She thought I was a whiny, drug seeking person and I wish I could have chosen someone nicer. But I was so depressed after months of dealing with sickness & pain that I just wanted to get it over with. Because the missing ureter section was big & up high, they could not just stretch the two pieces together, like sometimes works with a stent. (Usually works if there's only a sever, but not a whole section missing!)

 

Here were my medical choices to "FIX ME":

1. Have my left kidney removed, put on ice, and then reinserted closer to my bladder & the other end of ureter. My kidney was ok at this point, some scarring but working well.
2. Have my kidney removed completely, so no more infections. Original Dr at ER Hospital actually suggested this! My primary Dr had a fit and sent me to a different urologist after that - to the Nice ones in Glendale!
3. Have a section of my intestine cut & then used to connect the two pieces of ureter. Thus messing with TWO internal systems... argh!
4. Cutting the side of my bladder into a "U" shape to make a tube that would connect to the ureters, while sewing up the opening left behind the 'U'. This is called a Boari Flap procedure.

 

I ended up having the Boari Flap procedure, although my Surgeon made me do the 3 day bowel prep just in case I needed the Intestine work. That was yucky, painful & embarrassing! Thank God I didn't need that surgery instead of the Boari Flap.

 

Well, this saga has more to it, but I am limited by characters here. So: I had the surgery, got out of the hospital and experienced a lot of pain. They think nerves were damaged or affected during the original malpractice and that may be why I continue to have pain in that area to this day. (from pounding on my back, stabbing & throbbing along the whole route of my left ureter to painful voiding. The most pain is concentrated where the ureter is connected to the boari flap & where those surgical clips are. They could be catching on adhesions connected there & to my abdominal wall, causing more pain, or perhaps nerves getting poked. Who knows for sure. NO WAY am I having more surgery to find out!).

 

I get UTI's all the time and have other issues that are too embarrassing to share here. The Doctor, who I'll call "Deadbeat Doctor" did not take responsibility, and he did not even have INSURANCE!!! I will write a whole page on that next... You'll be almost as mad as me when you hear what he did & how the hospital here LET HIM!

 

So I live with pain every day and I try many different ways to cope with it. I am grateful that the mean surgeon did 'fix' the plumbing so I don't leak inside, but there are issues still. (Like surgical clips left inside & likely more adhesions etc) But at least no more tubes! I am back to ME and my snarky sense of humor too! 

 

I handle the infections as best I can and I work hard despite the pain I'm often in. I heard a nice lab tech say to me while drawing my blood "Well, at least you're on the right side of the grass". I use that phrase often, when people ask me how I stand my situation. I have faith to get me through, my dh & loving family along with some great supportive friends & colleagues. Those things and my addiction to tv & stories to distract my pain are what keep me on this side of the grass! So, when others may frown on the 'Couch Potato', I know that sometimes being a Sofatato helps me get away from my pain and painful reminders of my saga. I'd rather be a more 'fit' Sofatato, but that's another blog entirely...!

 

 

Watch for my 'Deadbeat Doc' posting... And maybe Sofatato Fitness in the near future? ;)

 

By the way, I have searched and searched and cannot find anyone else who has had the Boari Flap procedure or that has had a ureter section removed. If you know of anyone, please let me know. I'm curious if they suffer pain still and what their long-term outcome has been...

 

Thanks for reading!