My Journey

My Journey

It all started in 2006 while I was in nursing school. It was in May and I got the stomach bug, or so I thought. I was sick for a couple of days with nausea and vomiting and then I got better. Well, that only lasted a couple of days and I would just start having these episodes of nausea of vomiting. I also was having some abdominal pain at the time. I was to the doctors and they ran some tests and then sent me to an OB/GYN doctor thinking I had endometriosis which would cause the pain I was having. So they did an exploratory laparoscopy which revealed I did not have endometriosis and all my female organs looked fine and thought everything else basically did also, but she couldn't technically say since it wasn't her specialty.

During that summer, the beginning of August, I traveled to Montana to visit close friends of mine who had moved there. During the flight I really started to not feel good. I was nauseous and just didn't feel right. I felt like that for a couple days and then I started vomiting and got really bad abdominal pain. It got so bad that I had to be taken to the ER by my friends. I was admitted to the hospital and was there for a little over 2 weeks. I had never been in the hospital before and this was my first time to be away from family and on my own, so it was a new and scary experience.

I don't remember a whole lot of what all happened in the hospital, but from what I remember and from the stories I have heard I am able to put some of the bits and pieces together. The main reason I don't remember too much is because they were giving me lots of pain medication which made me sleepy and out of it a little. I know a whole bunch of tests were ran including a colonoscopy, gastric emptying study and more but I can't think of them all right now.

There were some unpleasant experiences associated with that hospitalization. I was so nauseous I basically couldn't move without having the dry heaves. I had to lay still and I was still nauseous but not dry heaving, but as soon as I moved even a little bit I would start dry heaving. For the colonoscopy, since I wasn't able to tolerated the bowel prep they had to put in an NG tube. That was not a pleasant experience. It was uncomfortable, but once they got it down and in the right place and flushed it, I immediately vomited what they had just put in. It was almost like a reflex. The minute it hit my stomach it immediately came right back out. I never had imagined anything like that happening. End result being that the NG had to come out and they had to finish giving me the prep by enema. Cay I say, not fun!!!!

From what I remember the colonoscopy didn't show much and so then they did a gastric emptying study sometime while I was in the hospital. During this test you eat a radioactive egg and they take pictures and watch how long it takes for you to empty it from your stomach. Well after 2-3 hours they egg I had eaten was still sitting in the stomach. They made the diagnosis then of gastroparesis.

I had to get a PICC during this admission for IV access and so they could start TPN. I did not have very good veins at all. I quit counting IV sites around 12-15 before they put the PICC in. An IV site would only last me one day at the maximum. I also had to get a G-J tube so I could do tube feeding since I couldn't eat at the time. The G part of the tube was to drain the stomach and the J part was for tube feedings. Not so fun, but you do what you have to do.

My mom, sister and nephew flew out to see me. My sister and nephew stayed a few days and then mom ended up staying the rest of the time with me and then flying home with me. Eventually, I was finally well enough to fly back home the end of August and follow-up with doctors in my area to treat me from then on. I had to take off that fall semester of college.

By December I seemed to be doing better and had been for a couple of months so the doctors decided that I didn't need my feeding tube anymore and so it was pulled out. Again another not so pleasant experience!! I was able to start back to college that spring semester and graduated in December of 2007 with my nursing degree.

From December of 2006 until around October 2009 I had good and bad days but overall I was able to maintain on my own without needing hospitalization. I had periods for a week or two at a time where I could hardly eat, I would get weak but I was able to work through those times. It wasn't easy and sometimes it got to the point we thought something might need to be done, but I managed.

During these years I saw lots of doctors and had lots of tests which at time appeared confusing and seemed to contradict at times. I was to Johns Hopkins which ran another gastric emptying test which they said showed my stomach working normally, so then they would say I didn't have gastroparesis

In October of 2009 I started getting sick again. This time I had trouble managing on my own and lost some weight. I would be really sick for a week or two where I couldn't tolerate hardly anything, sometimes even a mint would make me vomit. Then I would have a couple days where I could tolerate a little, still wouldn't feel good but was able to manage. This went off and on for a couple of months.

I was able to manage on my own until December when I had to be admitted into the hospital for the first time since my very first encounter with this. I was given IV medications for nausea and fluids for hydration and not allowed to eat or drink anything. They would run some tests, which seemed to never show anything, and then I would start feeling better. So they would let me start drinking and slowly increase my diet to where I was able to eat fairly well and then I would be discharged home. Still with very little answers to what was going on and why. One doctor would say I had gastroparesis and the next would say cyclic vomiting and then another would say abdominal migraines. I had no clue what to think.

This went on over a couple month until March '10 and they realized something more had to be done. I was having frequent hospitalizations and seemed to keep getting sicker and sicker. So they decided to put in another G-J tube for decompression and tube feeds since I wasn't able to tolerate much by mouth at this point. At this point the diagnosis of gastroparesis started flying around again.

That went well for a few weeks until when vomiting I would vomit the J portion of the tube into my stomach and esophagus where it did not belong. I would have to go to the hospital and have them do a procedure to put it back where it belonged. By May when this had happened the third time they decided to surgically place a J-tube. This happened on a weekend so they had to admit me to the hospital so they could give me fluids until the work week when they could do the surgery. So I now had a G-tube for drainage and a separate J-tube for feedings.

During this hospitalization they realized that my veins were getting really bad and so they decided to put in a mediport. During the procedure I ended up having some complications and woke up in the ICU with no mediport but a temporary central line. I guess during the procedure I went unresponsive and had what they thought was a seizure. They actually don't know what all happened there was talk of a stroke, an air embolus, etc. I woke up in the ICU laying in trendelenburg, nasal airway, and a non rebreather, and my monitor was alarming like crazy. The two main theories are that I had a major allergic reaction to vancomycin or when numbing me with lidocaine for the procedure it was accidentally injected into my veins. I was alright and after a couple days was able to be discharged.

From June until now I things had been tolerable. I wasn't great, but I was able to manage on my own and with the help of tube feeding. I still had nausea and still would get sick and still felt horrible but I tried my best to manage on my own. I had a time of getting very disgusted with doctors and didn't really want to be seen at all because it was so frustrating. After not getting answers and not feeling like anybody hears what you say, there comes a point where I had to just take a break.

On Friday, January 28th I woke up and had a little something to eat and immediately got severe abdominal pain. This had never happened to me before. I would have pain off and on in the past, but not this bad. So I just waited around hoping it would pass, but it didn't. The pain was really bad and then I started vomiting. I ended up having to go to the ER, which I absolutely dread, and I was admitted again. They weren't sure what was causing the pain, but I wasn't able to tolerate anything by mouth or through my feeding tubes. I was given IV fluids and nothing by mouth for quite a few days. A mediport was placed this time because they couldn't find anymore veins to use. They did a small bowel follow through which showed that my stomach and small bowels weren't working very well. I wasn't able to tolerate much tube feeds but I was slowly able to start tolerating a little by mouth and was soon discharged.

Upon discharge I was able to tolerate a little for 2 days and then every time I ate I would get that horrible pain again. Since I hadn't built up much strength from being in the hospital I went downhill really quick. By the time my follow-up appointment with my family doctor came I had to be sent right back to the hospital. Just from walking down the hall in the office my heart rate was in the 140's.  I was so dehydrated and malnourished that they said  I needed to go back to the hospital if I wanted to survive. By this time I had known things were really but and things were starting to really hit me at this point that I was really sick. It was out of my hands by this point, I knew I needed help.

On admission they saw that the contrast they had given me over a week earlier from the small bowel follow through was still in my belly. Which proved to them the my insides really aren't working very well. They had to do a bowel prep to get this all cleared out. Not a pleasant experience especially when anything taken by mouth or through the J-tube causes severe pain. They loaded me up with pain medications and did the prep. So still not able to able to tolerate anything by mouth and through the feeding tubes, they had to put in a PICC and start TPN. When starting the TPN I got refeeding syndrome which causes the electrolytes in the blood to move into the cells causing some serious problems. I had to be moved to a monitored unit so they could watch my heart and replace my electrolytes. I did have some heart rhthym issues but after replacing the electrolytes things seemed better for the most part. The nurses would come running into the room every time my heart did something it wasn't supposed to. Which ended up being a lot because every time I would go to the restroom my heart rate would jump up into the 140-150's.

After a couple days they decided it would be better for me to go home since they weren't able to do anything more for me and what they were doing I would be able to do at home with the help of nurses.

Currently I am now home with TPN and waiting for my appointment at Temple Hospital for further evaluation and to see if there is anything they can do. As of now, the official diagnosis is gastroparesis based on what they can tell.

I am hoping Temple will be able to provide some definitive answers as to what is going on and why. Hopefully they will be able to treat it.