Processing...

One thing is certain - I am seeking a new physician for at a minimum another opinion but most likely to be my new gastroenterologist.

My appointment definitely did not leave me feeling the way it should have.  In fact it was the second time in the last month that this doctor made me cry.  Oh, and he has only seen me twice in the past month.  It takes a lot for someone to make me cry - especially when it is someone that I am not personally vested in.

I had spoken to the nurse that was going to meet me after my appointment about the pain I was having in my shoulder the past few days - and could it be a sign that there is something wrong with my PICC line.  He suggested that I mention it to the doctor when he saw me, in case he wanted to send me over for an ultrasound of my arm to make sure everything was ok.  My doctor wanted nothing to do with it.  Told me there was nothing wrong with my PICC line and to let them continue to use it.

The doctor's assistant called me back.  First things first - get my weight.  I have gained 12 pounds in the past month.  12 FRIGGIN POUNDS!  How is that even possible?  I am maybe, MAYBE, eating one meal a day.  Usually something like eggs or toast or yogurt.  They have also decreased how many bags each week contain lipids (fats) from 7 down to 2.  And I continue to gain weight.

So I went into the room and waited for the doctor.  He walked in and asked me how I was doing.  I told him that I was the same, with the exception that I wasn't dehydrated or malnourished due to the TPN.  That I was still struggling with being able to eat anything - that my stomach is still not tolerating me eating.  I am in pain all of the time - the distension - everything the same.  Then it happened - he made me cry.

He proceeded to lecture me.  You have to eat.  This is ridiculous - you have to eat.  You have to force yourself to eat.  If you can't do that then you should be able to just do liquids.  Liquids will go right through and not give you any problems.  What do you think that you can be on TPN forever?  You just have to eat.

I was floored.  Here is a doctor who is supposed to understand gastroparesis.  Here is a doctor that he is supposedly an expert in dealing with gastroparesis patients.  I started to cry.  And then I started to lecture him back.

Do you think I don't want to eat?  Do you think that I don't try everyday to force myself to eat?  And no - your theory on the liquids isn't necessarily true - because I can only consume so much before my stomach is full due to the stomach acids.  Do you think I enjoy being on TPN?  No, I don't - but that's what I have to do to keep myself out of the hospital.

So he started to examine me.  Asked me if I was taking pain medication and that I really shouldn't because it slows down your GI system.  Guess what - I know that - but guess what - I also need something to alleviate the pain enough that I can function in life.  He asks me if I have been back to work.  Yes, I have been back to work - I try every day to go to work and live a normal life.

So then he makes the following statement - well you can't be on that TPN forever, so we need to do a percutaneous jejunostomy. 

In a nutshell - a j-tube - a feeding tube.  But he didn't bother explaining anything else to me.  Just told the nurse to get me to the check out and then put my file back on his desk.  He was going to call someone and then call me back.

So here I am completely left to let my mind wander and not have any answers to the fifty million questions that are now running through my head.

- Can you eat when you have a j-tube?

- Is a j-tube permanent?

- What are the complications associated with a j-tube?

- Would it be a regular j-tube or a button?

- How long would my daily feedings be?

- Are the feedings like my TPN where I would carry it around, or do I have to run it while at home?

- Are j-tube feedings considered to be home infusion?

I am just completed shocked that my appointment went the way it did.  I am discouraged that this is someone that should have a better bedside manner.

I am sorry that I am not your textbook patient.  I am sorry that my body doesn't respond to the medications you prescribe.  I am sorry that my body built up a tolerance to the Botox and that is no longer a viable option.  I am sorry that you are out of options to treat my symptoms and that you are now left to simply ensure that I am receiving my nutrition.

Wait...why am I apologizing to you?  Today was completely unacceptable - and I am not going to accept it.  I sent a message to a co-worker, someone who works with world-renowned gastroenterologists.  I gave him all my information.  He is now working on finding me a new doctor.  I need a new doctor to oversee my care.  But more importantly I need a new doctor right now to evaluate if I in fact need to have a j-tube placed.

If I do - that's ok.  Like my TPN, it would ensure that I was receiving the proper nutrition every day - allow me to remain involved in my daily life activities - keep me out of the hospital.  But if it's not time yet, then I don't want to rush it.

It's going to be hard to shut my brain off tonight - too much information from today to process.  Too much information and a lot of disappointment.