Upper GI X-ray update – Good and Bad news

It’s days like yesterday that remind me why I have not returned to work yet and why I am still recovering.

Yesterday, I had my upper GI X-ray.  Since it was an upper GI x-ray, I was not allowed to eat or drink anything past midnight on Monday.  Fasting is difficult with a stomach and even more difficult without one!  Luckily my x-ray was at 9am (but I was told to be there by 8:30am).

Aside: Because I had to travel back to the big city, it involved starting my day at 5:30am in order board the train on time.  Mom and I calculated that from door to door, it takes about two hours to get to the big city.  The trip involves driving to the train station, boarding the train, switching to subway, and walking to the hospital.  To be honest, by car it isn’t much faster due to the ongoing construction on the major highways.

The trip to the hospital just about wiped me out because I didn’t have anything in my system and I was running on fumes.  There are a lot of stairs in and out of the train station as well as the subway tunnel and I was in need of a rest by the time we arrived at the radiology department.

Around 9:00am, I was called in and told to get changed into the hospital gown.  It is funny because the radiologist assistant looked at my mom first and then figured out it was for me.  Once in the x-ray room, I saw the assistant preparing the infamous gas pills and the barium.  I inquired, “Are those the gas pills?”.  He replied, “Yes”.  I started to dread what was about to happen next (remember the gas pill story from when I had my CT scan?).  Then the radiologist came in and introduced himself. I wish I remembered his name because he was a wonderful doctor.  After taking a brief medical history, I warned him that the barium may not go down because I have issues swallowing large amounts.  Also I learned that no stomach means nothing to expand with the gas, which means, no more gas pills!  I heard him tell the assistant to water down the barium 50/50.

The X-ray machine must have cost well over my net worth!  It had all the bells and whistles.  It had a moving platform that I stood on and a large drum in front of me which was the X-ray.  After some confusion between me and the x-ray assistant, I was able to safely get onto the platform and position myself into a toasting position with my full cup of barium.  The platform moved around and I was in position.  The radiologist  began his instructions, “take a small sip”.  I knew that a small sip wasn’t a problem, so down it went.  Next, “take a bigger sip”.  Again, I knew that this should be okay because I have done this with my water + orange juice.  Finally, “take a BIG sip”.  The look of concern must have shown on my face because he asked if I was feeling nauseous.  I started to imagine a game show host announcing, “will it go down?”.  This procedure was repeated again from a different angle.

Amazingly enough, I was able to complete the whole test without having any spit up issues.  Although, by the end of it I could feel things building up.

After the test was complete, the radiologist reviewed my results with me.  He showed me the imaging screen (and I wish I took a picture of it!).  Now the good/bad news.

Good news:

I’m not imagining anything! There is something wrong. There is an issue with my esophagus/jejuneum anastomosis (join between the two).   Why is this good news? Because now we know what is wrong and it can be fixed.  The alternative would have been that nothing is wrong and you are on your own.

Bad news:

I have a 5mm diameter space where food/liquid can pass through.  The radiologist had me dry swallow a few times with just saliva and I am sure that was to see if I could even swallow my saliva to determine the severity of the situation.  He told me that he was going to email my surgeon that day to let her know of the results.  He also hand wrote a note with the results on it to be hand delivered to her office this afternoon (she was only 5 floors above the department).  I started to realize that this is a semi-serious situation.

Here is an image of my x-ray that I requested for my blog from my surgeon’s assistant.  It’s not a great image but you can get an idea.  The red arrow points to the stricture.  Normally, the width should be the same as the esophagus, which is the darker tube above the arrow (around my spine).  I believe the dark cloud is the water or barium entering my small intestine.  Pretty cool, huh? This is why I failed to take a picture in the x-ray room, I was too amazed by the result.

image

Once I hand delivered the note to my surgeon’s assistant, she immediately contacted the on-call physicians who work with my surgeon.  One of the physicians came down to talk to me and she said that referrals have been sent out to two doctors who can look at me.  Since I am only 6.75 weeks post op, they do not know if they can use the balloon to stretch the stricture (this is what is normally done in this case as it is common after a total gastrectomy).  What they will do is an endoscopy to look at the stricture from the inside and determine the next course of action.  This may be a ‘little stretch’, no stretch, or revision.

Once I heard the word revision, my mom and I were surprised.  I really don’t want to go back into surgery.  I will do a liquid diet if I need to until they can stretch it.  I’m willing to puree anything in order to get it down at this point.  I can’t afford any more weight loss. I don’t want to go back in the hospital.  I think the doctor had to tell us this option because they need to discuss all possible outcomes.  Mom and I believe that I will just do a more liquid diet until they are able to do the stretch.  I can still eat some things and I’m able to somewhat maintain my weight. Nobody get too worried.

So now I am waiting to hear from the doctors that will complete my upper endoscopy.  I am hoping to get in within the next week.  As much as I try to eat, I am losing around 1lb a week.  My total weight loss is now 21lbs post surgery.  This morning I was at 108lbs.  Thankfully, people still comment that I look great and that I don’t look sick.

Stay tuned for week 7 update.

P.S. At the end of my day there was a huge rainbow over my house. Yet another sign that everything is going to work out for the best.
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3 thoughts on “Upper GI X-ray update – Good and Bad news

  1. It was the most vibrant rainbow I have ever seen, much like yourself!! Funny how well you know your body, and nice to know you were right. Try to focus on what you do want and give no energy or thought to what you don’t want 🙂 stay tough lady! Xo

  2. Pingback: Whooaaa We’re halfway there – 6 Month post op | Cytosine Deleted – Life with the CDH1 genetic mutation

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