Monday, February 6, 2012

Feeding Tube Awareness and Update

This week, from Feb 5-11, is Feeding Tube Awareness Week.  The goal is to raise awareness of enteral/tube feeding as a positive and often life-saving medical intervention for those who are unable to eat and drink enough to sustain life and thrive.  I never imagined my life would turn out this way, having a feeding tube that is.  In the beginning I was scared and sad, not understanding how it came to this. Today I am thankful because it saved my life.  Though it is not a cure for GP, it has provided me with a temporary solution and enough strength and energy to stay healthy, an option I did not have prior to the tube.  

Recently, I've been approached by a number of people with GP who are really struggling to take in food, fearfully questioning whether or not the tube might be necessary.  I would like to address this as someone who has lived with a tube without giving actual medical advice.  

Though, overall I have had a positive experience, I would never suggest it unless absolutely necessary, when all other options have been exhausted.  Before getting the tube last August I tried a number of medications (including Domperidone and Erythromycin), supplemented liquid diets and a botox treatment.  Prior to this I had already lost 20 pounds living a very stressful life and not taking the time to properly care for myself.  After getting opinions from three doctors, including my primary internal care doc and two GI's, with my life on the line, the decision was made.
The procedure itself was not pleasant and took some time to get used to, including my husband and family/friends.  Fortunately, I have gained 15 pounds since August and have been able to increase food over time.  Currently I manage a well planned diet throughout the day and working on slowly decreasing the formula while carefully making sure my weight maintains.  As I experiment with adding in foods I will be sharing new recipes and tips along the way.

I truly and 100 percent believe the success of the last five months is due to taking care of myself not only physically but emotionally as well.  Most importantly, letting go of the fear and anxiety allows the body/mind to accept changes, allowing them to do their job.  When unwanted emotions do rise so does the pain and nausea.  Not to say I don't still have bad days but when I do I've learned to manage them in a way that doesn't take over my life and offset my health.  More to come on the role fear plays on our stomachs soon!

For anyone seriously considering getting a feeding tube I do have a few suggestions.

1. Meet with at least two doctors/specialists and explore all options (medications, diet changes, botox, gastric pacemaker, etc).

2. If there is not other choice talk to your doctor about hospitals that have the option to do the procedure through Interventional Radiology.  I went to Seattle for this (one hour away) to avoid open surgery, which does have a chance of increased complications and pain.

3. Surround yourself with all of the love and support you can get.  If possible have a loved one stay with you to help the first couple of weeks.  My mother did, helping my husband to feel less pressure and make things easier for the both of us.

4. Practice letting go of fear and allowing this device to do what it is made help you take in nutrients, gain weight, and over time the energy and health your body needs to live a better life.

Remember, the feeding tube is not a cure for gastroparesis.  I still experience symptoms and follow a restricted diet, get plenty of rest and make self-care a priority.  However, it did save my life and allowed me to gain the energy back I needed to better take care of myself...this time the right way.

For more reads on my feeding tube journey click here.  Feel free to contact me if you have questions.

"I understand that suffering, 
 when it cannot be avoided, 
 is here to help me on my way to glory.
 I understand that everything is connected, 
 that all roads meet, 
 and that all rivers flow into the same sea."

From Aleph by Paulo Coelho


1 comment:

  1. Dori O'Brien IIN StudentFebruary 24, 2012 at 10:05 AM

    Stephanie, you are a wonderful person, and I am so proud of you for braving this journey with grace and style! Thank you from the bottom of my heart for creating this blog, and dedicating yourself to the improvement of life for yourself and others who have this difficult disease. Please know you have all my support and well wishes for a successful and happy life!