GI Update

So this is one long overdue update! Life has been a little bit crazy (not medically thankfully!). I got accepted to University of Cincinnati's Speech-Language Pathology program back in August, which means we are moving from Chicagoland to Cincinnati!!! I will start the masters program in January and it will take me two and a half years to complete, which means I will be done in August of 2018. That sounds like a very long time away, but I am sure that it will fly by! Given this exciting new life event my husband and I have been trying to buy a house in Ohio, sell our house in Illinois, get jobs transferred, get my schooling set up, and essentially transfer our whole lives two states over! Thankfully through this ordeal I have been relatively stable medically!

The one aspect that I have been struggling with is my GI status. I got in contact with my GI doctor (who I am not overly fond of) back in June when I was strugggling with side effects from the medication that makes my stomach empty faster and he said that I need to cut down on this medication (domperidone) in order to decrease my prolactin levels. This medication is the medication that allows me to eat adequately, not have severe nausea constantly, decreases bloating, and helps ease abdominal pain.  I was on 10 mg 4x a day and he wanted me to cut it down to 10 mg 2x a day. This is not feasible for me as I cannot go that long between taking it, so I am taking it 5 mg 3x a day and 10 mg 1x a day. This is not ideal, but we had hoped it would help to lower my prolactin levels and allow me to have fewer GI symptoms (though they are worse than when I was at the higher dose of domperidone).

Since I was not overly thrilled with this GI doctor I got the name of a new GI doctor from some other gastroparesis patients. I was able to see him in July and he ordered a whole slew of tests (the k-mart blue light special the nurse called it). He wanted to confirm that I did indeed have gastroparesis since we had never done the test to confirm it, we had only assumed based on my medical history and symptomology.  I had a CT scan, a gastric emptying scan, scopes, and manometry (measures how strongly your GI tract contracts) done. All of them came back mostly normal, except for the gastric emptying scan.

This scan involves eating radioactive eggs and having your stomach scanned every hour for four hours to see how fast the eggs move out of your stomach. I had to be off of my domperidone for this test. It was a long few days without the medication, but the test gave us some valuable information. Below are the results of the percentage of the meal I digested versus the amount that is considered "normal".

Time      Normal        Me
1 hr         10%+           13%
2 hr         40%+           28%
3 hr         70%+           28%
4 hr         90%+           50%

As you can see I was fine at 1 hour and not too bad at 2 hours, but after 3 hours my digestion had slowed down remarkably compared to what is considered normal. Side note, this is why you should always request the 4 hour test and NOT the 2 hour test because many cases of gastroparesis are missed if you do not scan for the full 4 hours. You should have the vast majority (if not all) of your food digested 4 hours after eating, but my sluggish stomach only digests 50% of my meal.

We learned from all of these tests that the rest of my GI tract does its job and is not snail paced and there are no other identifiable issues going on in my GI tract. With this being said the question of the day is what to do about my super slow stomach. I saw my new GI doctor again this week and he gave us a few different options. He agrees that I need to get off of domperidone because of the side effects. The bad news is that there are very few other medications that help to speed up your stomach. He gave me a prescription for two other medications, but neither of them are ideal. The one I am going to try first is called erythromycin. It is an antibiotic so that means I will probably build up a resistance to it. Most people do well on it for a couple of months and then the efficacy goes drastically down. It is a good short term solution, but probably not the best long term solution. The other medication that I can try is called Reglan. I am not so keen to try this medication because it can cause permanent neurological side effects. Some patients develop a parkinson like muscle twitch (tardive dyskinesia) that does not go away even after discontinuing the medication. I am not so keen on the thought of more permanent neurological damage above and beyond what I already have, so I am going to hold out on this medication until there are no other options.

Another option we have is to look into is a gastric stimulator. It is a device that is surgically implanted and stimulates to help the stomach contract and pass food through more efficiently. We are not sure if I will be a candidate for this device or not because one of the number one things that this device is shown to help is vomiting and I do not have a problem with vomiting excessively. It does also help nausea, pain, and the early feeling of being full. I am going to contact Cleveland Clinic, which is the location closest to me that implants the device (it is a newer device and not many places perform the surgery) and set up a consultation with a surgeon to see if he/she thinks I would benefit from the device and if I am a candidate for the surgery.

I also had to get an EKG (heart study) done because both the domperidone and the new medications can effect the rhythm of the heart so we need to make sure that I am not having any issues with that along with the more obvious side effects. I do not think I am having problems with my heart and my previous EKG's (last one was in February) have always been fine, so I am not too concerned. I will also have blood work done next week to check some things before we start the erythromycin.

Well I think I will leave that terribly long GI update there for now until we get some more information and I can meet with a surgeon at the Cleveland Clinic. I will write another update on the rest of my medical on goings when I get some time, but there is not too terribly much to update on that front!