POTS, IBD & Gastroparesis…Oh My! {Part 2}

You know that time of day, when you first wake up in the morning?  When you’re not exactly sure what day it is, what time it is, or what you have to do that day.  That is my favourite time of the day because for about 10 seconds I don’t remember all the other stuff, the pain, the nausea, the dizziness, etc.  10 seconds, and then it all comes rushing back.  In my last blog post, I talked about my admission to the hospital in May 2016.  I discussed POTS and how I received the diagnosis of inflammatory bowel disease back then also.  Well during that same hospital admission the doctor discovered fluid in my stomach while performing my upper endoscopy.  So what does this mean? Well there shouldn’t have been fluid in there.  Prior to going to the OR you are not allowed anything to eat or drink from midnight the night before (except for the special prep drink that is oh so pleasant…not).  Basically, by the time you hit that OR table you should have entirely empty digestive system but when they were trying to check my stomach, there was a significant amount of green fluid visible.

After I was discharged from the hospital, I went to my PCP’s office for my follow up of all the tests that I had while admitted.  When she read over the notes from the GI specialist she noticed the comment about the fluid and told me that I would have to go for a test called a gastric emptying study (GES).  For this test, you are taken to the nuclear medicine clinic in the hospital, you eat some sort of food (they generally use scrambled eggs or an egg salad sandwich) that has radioactive dye in it, then you lay on a table and at certain intervals they slide you under a camera to view your stomach and gauge how well the radioactive eggs are moving along.  So the first challenge was that I have celiac disease so I clarified with the hospital if I could please bring my own sandwich, thankfully they had no problem with this request.  The second challenge was the actual process of eating the sandwich, I could only tolerate liquids with very minimal soft foods (mostly overcooked rice) and now I have to eat this egg salad sandwich in 10-15 minutes and keep it down.  I had a wonderful technician who encouraged me the whole way.  She let me get up and pace the room between images, I was allowed to sit in her comfortable desk chair if I wanted to be up and she made sure to move quickly when I was strapped down and laying under the camera for my images.  The test with all the images took around 2 hours and you have to keep the radioactive eggs down or else the test is stopped and considered a fail.  It was actually a very interesting test, while I was lying on the table having the images taken, I could see the computer monitor the tech was using.  It was a black screen and there were all these tiny white dots floating in one area on the left side of the screen.  This is the radioactive material in the eggs inside the stomach and it allows them to see how quickly or slowly the food moves.  Thankfully I made it through the whole test and then as soon as I was discharged to go home, the egg sandwich made its exit too.

Once we received the results from the test, I was told that I have a significant delay in gastric motility, also known as, gastroparesis.  “Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract.  The movement of muscles in the GI tract, along with the release of hormones and enzymes, allows for the digestion of food. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally, food then moves slowly from the stomach to the small intestine or stops moving altogether”1.  Basically, when I eat food, it sits in my stomach for hours and hours until it is finally moved through the rest of my GI tract.  It doesn’t sound too bad, except when you actually live with the problem it is bad, absolutely horrible.  Symptoms that I deal with are: nausea, vomiting, abdominal pain, feeling extremely full after only a few bites of food and sometimes acid reflux.

Ok, so now we have another diagnosis, what’s the treatment? Surprise, there isn’t a specific way to treat gastroparesis.  There are medications to help improve stomach motility (for one example, domperidone, which is what I take).  Then there is symptom control treatments, medications to reduce nausea and vomiting, liquid diets to help reduce the amount digestion your stomach has to do, etc.  So as of now (February 2017) I have been on a mostly liquid diet since May 2016.  I drink Boost meal replacement shakes, I eat apple sauce, drink water, Powerade, tea and then I try every now and then to have a serving of mashed potatoes, overcooked rice or overcooked gluten free noodles.  Lately, the whole soft food thing really hasn’t been working.  I mostly have a Boost, a small bowl of applesauce and my cup of tea in the morning and then at night I have another Boost.  For awhile I was blending the Boost with Greek yoghurt for some more protein but over the last couple of weeks I’ve been unable to tolerate that.

Gastroparesis is extremely difficult to live with, at the moment domperidone works a little bit for me but it’s by no means a cure or a miracle, I literally cannot eat.  I have to plan my meals to try and get as much protein into me as I can and I have to eat in an order that allows me to get the most nutrient filled items into me first, then if I can’t finish the rest at least I got some protein and nutrients.  I don’t necessarily feel hunger anymore, sometimes I do but it’s becoming rarer.  I sometimes have to remind myself that I haven’t had anything for hours and I at least drink a Boost.  I’m hopeful that once they start figuring out my other conditions and treating them properly that my gastroparesis will improve but I will just have to wait and see.

Thank you for reading this week! I will be back again next week with a new post.  I may not move on to the next diagnosis yet but we’ll see, I’ll have to do some brainstorming over the weekend.  Hope you all had a great week, happy Friday!

Wishing You All Health & Happiness,

Lyndsay

References

National Institute of Diabetes and Digestive and Kidney Diseases.  (June 2012). Digestive diseases: gastroparesis. Retrieved from https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis

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