Thursday, May 17, 2012

This is a topic I've been wanting to touch on in awhile, but I didn't want to do it when I was in a bad mood ;) So I'm doing it today!

Pain is apart of life when you have chronic illness; albeit it is apart of all life in this imperfect world.  The twisted part is that we often have to inflict it upon ourselves.  Within an hour of waking up, I've already poked myself multiple times-fun way to start the day!  I give myself shots and test my blood sugar.  I force myself to hit that "+" button on my feeding pump and then the "start" key.  (This increases how many milliliters per hour the pump puts into my small intestine.)  I have a feeding tube surgically placed directly into my small intestine.  However it barely moves on its own, so I take medicines that cause it to cramp and contract (MMCs/peristalsis) to try to get things to work properly: thus the shots, plus severe drug interactions.  I can change/fix my own feeding tube, which is another painful procedure, as the stoma you slide it in and out of is quite sensitive.  Another thing that must be done every week is a needle change in my mediport.  This port is my lifeline, delivering all of my nutrition and hydration each day, as I'm currently not tolerating feeds in my J-tube.  I am always trying though, I just upped my rate to 25 for the second time in about 6 weeks.  I've been running just mostly slow feeds at 8-12 ml/hr.  These are called "trophic feeds", and even that was a battle at first but it is good for your liver to do so when on IV nutrition called Total Parental Nutrition (TPN)

At times, it doesn't seem right to be the cause of your own pain, to be creating it!  Especially when things go wrong: hit a nerve doing a subQ injection, too dehydrated for an easy blood sugar test, miss when accessing your port and have to try again...being told to keep upping your feed rate or not go below a certain rate, even when it feels impossible.

My wonderful GI, whom I trust more than I can say, literally refers to it as "being a little bit mean".  She has a great balance though. I'm not expecting to feel fabulous as I have these problems and that isn't going to change; she's not going to do what isn't good for me.  For example:  I am not allowed narcotics, for any reason, except after surgery.  And that is limited, if I've had a central line placed, I can have it in the PACU just after waking up, and maybe a few doses after.  For my feeding tube placement I was definitely given enough, 7-10 days after we began to wean and I was still really hurting but it was reasonable.  My gut completely shut down in the days after surgery and I gave the surgeons a big scare, but she came right away!  Narcotics really slow down your GI tract.  So it's not good for me, or any dysmotility patient, to have narcotics for motility related pain as it's contraindicative.  That is being a little bit mean, it feels mean when you are at a "9" or even "10" for pain, but it's entirely necessary.  I'd just be in more pain in the end!  Running feeds sometimes feels the same way, but I know what I can and cannot handle.  I started asking myself, "what is reasonable?"  What symptoms are annoying vs. completely taking away my quality of life?

It's important to recognize that this changes.  Whenever it's time for TPN, a new drug (which lately includes fighting insurance), J tube, different or more IV fluids, the gastric pacer, etc, the decision is made before I am losing too much if any ground.  Backsliding can cause long-term problems and can take months for me to get back to baseline.  I know I've discussed this before:  It is so important to have doctors that will listen to you, AND hear what you say-because there is a difference.  They also need to recognize that you may have more than just the disorder they specialize in going on: while they don't necessarily need to be treating you for it like mine does, they do need to recognize the importance of any other issues you may have in your care.

By the way, thanks to TPN I am headed off for my Kindred Spirit's house this coming week--and plan on challenging myself!  I'm very excited and my body is just going to have to deal with all that we have planned. ;-)

Have a wonderful weekend, everyone!

1 Chronicles 16:11  Seek the LORD and his strength;  seek his presence continually!

1 comment:

  1. Hope you and your KS have a fun-filled, wonderful weekend Milly!