Living with Gastroparesis

Last week was not my week. I was without my pain medications due to a huge mis-communication between my pcp and her nurses. By the time I noticed this error in communication, it was too late; she was gone, left for vacation. Long story short, It took me all week to get my pain medications and while waiting, I had to check in to the ER two times that week for help. The pain I am experiencing is something different. It is unlike my normal GP pain. It is sharp and crampy along the right side of my body between my gastric neurostimulator and pelvic bone. I was also suffering bloody bowel movements. Even with these alarming symptoms, the ER gave me medication and sent me home. My husband and I came to the conclusion that the ER is no place for a person like me. They have no clue when it comes to anything that requires any extra thought process. Unfortunately my gastroenterologist was out of the office so I had to wait a few more days for him to return before I could make an emergency appointment to see him.

When I got in to see him, he agreed that a colonoscopy would be most appropriate, given the symptoms. He took an x-ray and based off that he also wanted to do an endoscopy. He also wanted to try a new treatment of botox injections into the pylorus valve of the stomach. It paralyzes the valve allowing food to exit the stomach more freely, thereby allowing the stomach to empty at a more appropriate time. I am not sure how I feel about the botox treatment. I hear that it can cause dumping syndrome which is by far worse than gastroparesis. It could also just not work. I think more research is needed to make a decision, but I don’t really have much time. My appointment for the procedures is in 2 days (8.23.11). It will be preformed under general anesthesia. At least I won’t be waking up in the middle of this scope, like scopes of the past. A small reassurance, but I’ll take it.

This is a big week for G-Pact and Oley. It is the week where all of the members take time to spread awareness through media, meetings or even casual conversations. We are always trying to spread awareness of DTP (Digestive Tract Paralysis – a term that covers all digestive disorders that slow down motility) but this is the week where we really pick it up. Facebook is the best place to find information regarding DTP. Awareness videos are reposted, people are directed to sites where they can learn more about DTP and how they may be able to help make a difference in the life of someone with DTP.

I’ve made profile pictures for people to use to help spread awareness. All you’d need to do is tag yourself in these photos, or download them, and place them as your profile picture for the duration of DTP Awareness Week (August 19th – 27th). If anyone has questions about anything GP or DTP, send them my way =) Here are some of what I made!

ER Admission for Chronic GP Pain

I have been going through some rough times recently. The weather is partially to blame in that the heat has made it difficult for my tpn to keep up with my hydration needs, often landing me in the ER with extreme stomach cramps, migraine headaches and unrelenting nausea. My heart rate soars to the mid and upper 140s as my vitals are taken. I get rushed back into an ER exam room where I can be hooked up to heart, respiratory and oxygenation monitors. Blood was taken, four whole vials for a standard panel of stats. Fluids were administered via IV through my chest portacath and anti-nausea medicine, Zofran, was also administered through the central line. And there I laid for what seemed like hours. The doctor finally comes in and asks the most condescending question a patient could hear in an ER room, “how are you feeling today?”

I usually go home the same day I get to the ER, 4-5 hours later, pumped up on fluids and on occasion, pain medication. However, the pain I have been experiencing lately has been very localized to a very specific spot. The pain runs along the leads of my gastric neurostimulator. It feels like a burning, tight, and crampy pain. I expressed this to my gastroenterologist and he suggested I do another GES to first check on the stimulator and see if it had any effect on my stomach. He was hoping the stimulation would sort of “kick-start” my stomach into working. The GES would show increased emptying times when compared to my previous GES done in 2009.

GES Experience

I arrived for my second GES study bright and early at 8:00am. I was not allowed anything by mouth for 12 hours prior to my appointment. This wasn’t a problem because I don’t eat anything by mouth, I am mostly NPO and receive my nutrition via TPN. I check in and get called back into the room where the large machine that is used to scan my stomach for food, is located. I’m instructed to eat eggs (egg white egg beaters that were microwaved) laced with radioactive tracer, bread with jam and drink a cup of water in 10 minutes. I look at him like he’s crazy. Who ever makes up these meals clearly makes them without their victims in mind, because there is no way a person with any motility disorder is going to be able to choke down that meal. I was able to get the eggs down, since I knew that was the most important part, and a piece of bread. My first solid meal in I don’t even know how long and it was painful, there were tears, but I hopped right up on that table and got him to start the four hour test before any of that food came back up.

The first scan is used to compare the rest of the scans. A scan is done at hour 1, 2 and 4. Between the scans you are free to do whatever you want. If you are scheduled to have this test done, bring something to entertain yourself because you are going to be there for awhile. I brought my iPad loaded with movies, and the hospital had Internet. Between scans I watched movies and chatted it up with people. Even with entertainment, I pretty much wanted to claw my eyes out from boredom. The results of the test were done using complicated equations combined with visual confirmation. The scanner detects the traces of radiation and maps them out in your stomach. The results are reported back in percentages of food left in the stomach at set intervals.

Normal results are:
T1: 90%
T2: 60%
T4: 10%-0%

My Results from 2009:
T1: 98%
T2: 86%
T4: 4%

Results from July 2011:
T1: 98%
T2: 96%
T4: 34%

My gastroenterologist was upset to see how fast my stomach had slowed down and how the gastric stimulator had zero affect on the stomach. The test in July was with the stimulator ON. It is not approved nor expected to pace the stomach, but it was the hope that it might start the stomach into working. This clearly is not the case. He has suggested vigorous stimulation and more powerful medications to help the stomach to empty. For now, TPN is still how I will be getting my nutrition. It is working, I’m gaining and maintaining weight, so I can’t exactly complain. The only downside to higher settings on the stimulator is that it wears out the battery at a much higher rate, requiring more surgeries. Guess we will address that when it comes time.

I hope everyone is enjoying their evening! Happy belly days!