feeding tube 18 years post op
I had open RNY in 2003 and have had 11 open abdominal surgeries since due to problems with adhesions. I have been off work since January and on liquid diet since March 5th due to pain when eating. I saw surgeon today and he is putting NJ tube in Monday and if I tolerate feeding he's putting in pej Wednesday. Has anyone here had any experience with this? I've been struggling emotionally not being able to eat, but tube feed is making it all so real. I know I need to get in calories to get better but never thought it would get to this point.
I am so sorry to hear this Katherine. I have not had any experience with what you are going through. But I know this all must be so very hard for you and hope and wish for you that you have support you may need not only here but also at home. Wishing you better days ahead and sending healing thoughts and prayers.
The RNY wasnt the cause of most of my issues it was scar from original surgery. I also have gastroparesis which just adds to the problems. I have changed my diet over the years, I have been a vegetarian since 2014. I have been able to control symptoms with my diet. I have finally found a doctor willing to take me on instead of referring me to another doctor. He wants me to build up my strength before we consider surgery so probably be on tube feed at least a few months. Dr Pilkington did RNY in 2003 at Central Michigan Hospital. I have been working with Dr Daouadi at Henry Ford and he has been great and has wonderful support staff, would encourage anyone in Michigan to consider him as a surgeon
Your body needs nutrition but I know this is a hard thing to process. The NJ won't be pleasant but it will be bearable. If your surgeon plans on placing a jtube (peg), have they discussed the surgery and recovery with you? Please make sure that you understand that. Recovery can be a bit rough but it gets better. Make sure you have a pain management and aftercare/home health supply plan in place before surgery. I have a GJ tube, (my second one since bariatric surgery; my first tube failed and had to be resited). I have had unexpected infection and pneumonia after each one. I am not sure why but probably because my immune system is shot. They also try to clean out scar tissue while in there. My body has produced way too much scar tissue, which is what led to a lot of my issues after surgery. It just happens that way for some of us. There are some good groups on Facebook for people who use feeding tubes. They are a great way to get an idea of the scope of experiences with feeding tubes. Hang in there. You will feel better with nutritional rehabilitation from a brain standpoint but there is a learning curve to tubes so I would advise trying to stay ahead of it in a few support groups. That is where you will find a lot of real life meets the road answers.
I did the NG tube for 8 days and lost 7lbs, so doctor pulled it and back on liquid diet. He found a blind loop near pouch, its supposed to be 1cm and mine is 6cm so he is doing a resectioning if I can put on the weight I lost from tube feed. I have appointment Thursday to talk about surgery so hopefully get it scheduled and be eating again soon. I really appreciate the support, I don't know anyone who has as many complications as I have. It's definately been a journey
