Saturday, February 16, 2013

Feeding Tube Awareness Week and TPN Week 1

Last year at this time I posted about my experience and success with the first feeding tube and how it changed my life.  What a year a difference makes!  Though the week is wrapping up, I want to again bring light to another Feeding Tube Awareness Week, 2013.  I've shared my own experiences with the j-tube over the last 1 1/2 years and though I'm not currently using the one I have, there are many other resources available to learn more.  These tubes have saved countless lives and provide essential nutrition and calories to those who cannot take enough in otherwise.

When I first had one placed I started following a blog, Adventures of a Tube Girl, who really shares a lot of good advice from her own experience and tips for caring for the tube itself.  I learned about Medihoney used in place of antibiotics for infection and how well Calmoseptine barrier cream works for irritating drainage.  In fact, just recently, she became pregnant and had a healthy baby boy!  This reminded me that anything is possible!

Two organizations that provide information, education and support:

Now for the current update...
Warning, this gets a little personal and is a bit difficult to share.  I do so in hopes of helping anyone out there going through similar challenges.
It has been 12 days since the PICC line was placed in my upper right arm.  The procedure was surprisingly painless, apparently we don't have nerve endings in our veins to recognize pain, according to the nurse.  The entire placement was done in less than 2 hours.   Most of the time was just preparing a sterile environment and using ultrasound to find the best vein.
The following 3 days a sweet and knowledgable nurse, Leslie, that ThriveRx sent, spent the afternoons educating us on sterile techniques to care for the line, change dressing (done 1x/week) and set up and disconnect feeding.  The first 5 days we started slow with only 400 calorie bags over a 12 hour period consisting of dextrose and protein, no fats yet.  Because the fluids are going directly into the blood system, it is important to allow the body to adjust to this new form of nutrition.
This was an incredibly difficult time mainly because of the intestinal problems I've had since the J-tube surgery a month ago.  Chronic constipation has plagued me and eating just seemed to cause more pain. My doctors and dietitians recommended to stop feeding tube and solid foods until things cleared up.  That weekend I sipped on homemade broth and took lots of time to rest.  I'm hesitant to share this but will honestly tell you that my weight at that point was 93 lbs.  Fear was doing it's best to cloud my mind and body, at moments making it's way through, creating overwhelming anxiety and small panic attacks.  Luckily, I have T here to hold me when I'm down and lots of friends/family to call on to bring me back up, back to a place of encouragement and faith.  I have slowed down and make sure to take time to focus on deep breathing and turning any negative, fearful thoughts into ones that reflect a future of health and happiness (basically a warm, sunny beach with my toes curled up in the hot sand and a fresh, ocean breeze!)
On Monday, a local home health nurse came by to draw my weekly labs, take vitals and watch Trevor do a dressing change to make sure we have it down.  He is an absolute rockstar with his patience, willingness to learn and understand, and ability to turn into nurse T overnight!  The labs looked good so on Tuesday we received shipment for the new bags, which over 7 days average out to 1069 calories/night.  This time 3 out of 7 include lipids to infuse 3 days/week.  The nurse returned Wednesday to evaluate me for the first 30 minutes on lipids to make sure there was no unusual reactions, which there weren't thankfully.
Now, the TPN is going great, knock on wood!  Bare with me now because I'm rerouting back to the original problem, pain with the J-tube.  The last month I have gone through a number of "remedies" to help move my stubborn bowels.  Though some have brought relief, not enough to feel better.  Doctors just keep suggesting Myralax and even 5 days of magnesium citrate, yikes!  2 days was enough for me and did not feel good.  So, this week I put up a post on a private GP FB page (so the whole world doesn't hear about the big C) and had an immediate response from a gal who, after going through abdominal surgery years ago, had the exact same issue.  In fact, they were disucssing more surgery to remove the blockage.  That is when a nurse at the hospital gave her a concoction that she said always does the trick.  It worked for her within minutes and saved her from additional surgery!  A few others posted that it also works wonders for them.
Yesterday, I gave it a try and waited patiently, sitting in the sunroom reading Yoga Journal to calm my mind.  I waited and waited, 2 hrs going by when a good GP friend came over for a visit.  We exchanged soups, treats, frustrations and hugs.  By the time she left, 4 hours passed and as I shut the door behind her, it hit me.  Lets just say 15 minutes later I felt like jumping for joy!  Strange to write about but I know many of you can relate.

"Magic Juice"
2 tablespoons each of the following:
-Prune juice
-Milk of magnesia (found in pharmacy section, OTC)
Mix well and drink quickly for best results.  I'm not sure if the Sprite actually helps or is there for flavor but I wanted to follow exactly what was advised this time.  Sprite does have high fructose corn syrup, which is not an ingredient I promote, however considering the situation and the small amount consumed I decided to let that go.

To wrap this long post up, as of today there is still pain, which I'm beginning to think might be related to the tube itself, possibly adhesions.  Next week I will visit with the doctor and get some opinions.  Maybe in time things will heal so for now I must be patient.  Small bites of food and TPN, along with plenty of fluids, are keeping me going until things do work out.  We will bump up the TPN calories this week if necessary but hopefully for a short term.  As you know, I love to eat and share delicious GP recipes and look forward to adding more back in to the diet in time.

For continued education on GP, dysmotility, and tube feeds/TPN, visit  They have been a great company for my supplies and employ knowledgable and compassionate dietitians and nurses.

1 comment:

  1. You continually inspire me with your Courage and Strength! Thank you for sharing your honesty during the challenges you face along this GP journey!