Finding Balance Yet Again...J-Tube #2

Bookmark my sister-in-law gave me :)

Today I was blessed with the opportunity to meet someone here in town, female, my age, bright and positive energy, who just happens to also live with a j-tube, amongst other challenges including gastroparesis.  It seems awful to say what a relief it was, but truly it felt great to sit next to someone, on my cozy couch, sun shining brightly on us through the windows, sharing experiences we never thought would be a part of our life.  Being in my early 30's, surrounded by active and healthy friends, it is so easy to feel alienated, to try and understand why this is happening to my once-upon-a-time active and healthy body.


It's hard to believe only a week ago I was lying in the hospital bed, fighting the urge to ask for pain medication, too weak to walk on my own and truthfully scared for my life.
The surgery itself went well but left me with a body that did not want to go through that particular trauma, struggling to find it's way back to "normal."  Like most GP'ers, dysmotility is an ongoing challenge, which pain medications and bed rest do not help to improve.  The doctor was hesitant to let me leave until we knew things were moving through me and at the time there was pretty much no bowel sounds to prove hopeful.  They pumped me with all their ideas of what would help...myralax, senna, ducalax, you name it, which only seemed to increase the bloating and 9-month pregnant feeling.  Finally, by Wednesday, 5 days later, there was a bit of relief.  Being there wasn't much more they could do, I decided to go home and finally get some R & R.  Oh, what a wonderful feeling!  There is absolutely no place like home after the hospital bed, being woken up every 2 hours, IV's, jello, and the stale, sterile air.  Within 24 hrs of being in the comforts of my own home, my body started functioning much better.

It makes me wonder how much faster patients would recover if a hospital was set up like a spa.  Yes, it does the job in saving and sustaining lives, however, there were a number of times when I felt the opposite, how one simple mistake (and there were a few) could also take a life, or at least bring it down quickly.  Not to mention the food choices like too-red jello, coffee, cream and artificial sugar served with all meals, and "broth" that tasted like a cup of MSG.  Can you imagine if the beds were actually comfortable enough to get sleep in, walls were painted soothing colors and soft, healing music played in the background while a massage therapist rubbed your feet!  Maybe throw in a little acupuncture for the pain and nausea and some Natural Calm magnesium tea in the evening to relax and get the gut moving too.  Well, you never know were the future will take us and I certainly hope mine or yours isn't spending time in the hospital. But just in case and for those who are there, we can still imagine such a world.

The tube feedings are going okay as I'm working on slowly incorporating small meals in again.  Some issues lie in finding a good set-up for the tube, as some of the parts to it don't seem to fit well together, causing some leaks and blocks.  I've decided to work with ThriveRx, a company that provides supplies as well as lots of education to the GP community.  There are moments when the pain feels unbearable, or the mere thought of the situation brings a tsunami of fear and exhaustion.  That said, I've overcome hard times in the past and holding on to the faith that this too shall pass.  As I sit here at my table typing, the sun is warming my face as I sip on homemade broth for some intestinal healing.  Squirrels are chasing each other along the back fence.  Sunday football is announcing plays in the background to T and Dad, as my puppy Luna is running circles around the house, jolly as ever just to be loved.  There is the clicking sound of the feeding tube as it pumps nutrition/calories into my body, allowing me to gain needed strength, despite the craziness of it all.  I take a deep breath, hold it and release, making peace with the moment.  Life is still happening and I refuse to let mine stop.

If you have been through similar experiences, please feel free to share below.  It's not easy living with GP or feeding tubes but I don't feel alone anymore and neither should you.

With hope and light,
Stephanie