Sunday, January 20, 2013

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,


  1. Stephanie, I'm so glad to read this! It eases my mind that you are dealing well with your situation and getting better. I'm glad you have made a friend right there in your area, how wonderful that would be.
    I do have a question, do you have colonic inertia or Chronic Intestinal Pseudo-Obstructio? I do, I have to have a "clean out" one day a week and soon will go to two days a week. As we have talked about a feeding tube soon, I will need a TPN feeding the Dr. said. I am wondering if this will be as hard as what you have been dealing with?
    Please take care and keep us posted.

    1. Hi Jeannie,
      Thanks for the kind thoughts! It is truly a blessing to have a couple of local GP gals here to share with. When I did the awareness walk back in September I met quite a few within the area, between here and Seattle.
      As far as the colonic inertia/pseudo-obstruction, yes my doctor believes that is something I have. I've battled with pretty severe constipation for years without any actual blockages. Luckily I usually am able to manage it with a couple different remedies such as Calm Magnesium, sometimes up to 1 1/2 T. An herb I've found to help, short-term, is Intestinal Movement Formula by Healthforce. Occasionally I've had to turn to Miralax, stool softners, Senna, and such but they always make me feel so bloated and terrible that I try to avoid if possible.
      So, are they talking tube and TPN together? The tube is probably the safer route but everyone is different. My first one went pretty well overall for the first year. TPN is usually used as last measure unless your intestines don't work at all. If I don't gain weight soon I know that is a possibility for me as well.
      Good luck with everything and keep me posted too.

  2. Steph, SO HAPPY to hear you're coming to terms with this latest upheaval! Having someone near you who suffers many of the same issues will, I am certain, be a wonderful help to you! I'm so very happy for you and her! Jonny says he WILL NOT do a feeding tube again, so that makes me fearful, especially since he's has such a rough month so far. Things are getting slightly better as he has been keeping at least one meal a day down. I've also gotten him to read "The Spoon Theory" and an article written by one of the other Admins over at Green's Not Easy Family, titled "When Saying You look Good becomes an Insult." Both of which moved him immensely. I'm having copies of both made and intend to carry them with me to give to all of his friends, and am sending copies to his family in Ohio. Anyway, just wanted to let you know how thrilled I am for you and that I will continue to keep you in my prayers!

    1. Thanks for the encouraging words Lora, you have been a great cheerleader for me during all of this!
      I also said I would never go back to a feeding tube but when my life depended on it, there was really no other choice. Despite the challenges, being able to get in an additional 1100 calories IS keeping me alive! Not ideal but I look at it as a temporary solution and not forever.
      I love the spoon theory too, great perspective to keep us in line.
      I will continue to send Johnny healing thoughts and strength to the both of you :)

  3. that I am finally in control and have no pai had my J tube of 3 years removed the day afte had my J tube of 3 years removed the day after Christmas and Kon s say I live a health and productive lif being afraid I neve being afraid I never would after doctors told me that this is pr probabl going to take m going to take my life so necer ever give up hope i didnt! Stay strong! We are all in this together

  4. Replies
    1. That's encouraging to hear Jana, thanks. Yes, phones never seem to get the message correct but I think I here what you are saying :)
      Do you still have GP and if so, how is that going for you now?

  5. I love reading your blog. You inspire me to keep a positive attitude! I hope that you're feeling better! Hang in there. <3

    1. Emily, you are so sweet! Glad you find this a positive place to be, which is my passion and intention :)