A Little About Me

Since I am just starting out with this blog, I think its very important to be able to share my journey with you all to understand a little more about me and my illnesses.

I was completely healthy growing up and hardly ever got sick. I was very active and involved in gymnastics, cheerleading, soccer, and dance. Well you know the saying "Sweet Sixteen".... well lets just say that mine wasn't so sweet. I started getting sick around my sixteenth birthday. I had a bad stomach virus that lasted for about 3 weeks. I couldn't keep anything down during that time. I actually ended up going to the Emergency Room for dehydration. After I thought that the stomach virus was gone, I was still getting sick alot throwing up. I had to keep going to the emergency room for fluids. Throughout the next couple of months I would still get sick. It started to seem like it was happening more and more often. 

When we realized that this was still happening and I was nauseous, vomiting, having reflux, and losing weight we saw my pediatrician and she recommended that I go see a Gastroenterologist.

I was misdiagnosed with something called cyclic vomiting syndrome. I was still getting sick, ending up in the hospital alot and the medicines were making me sicker.  

I was going to the hospital every four to six weeks for fluids. I have done many tests such as endoscopy, laparoscopy, gastric emptying study, MRI, Cat Scan, Barium x-ray, and many others.  The gastric emptying study was what diagnosed me with Gastroparesis in summer 2009.

After having a correct diagnosis I was glad to finally have a name for what was going on with me, but realizing that there was no cure for this disease was difficult to handle and wrap my mind around that I will have it for the rest of my life. 

I was constantly in and out of the hospital.. I frequented doctor offices more than I did going to the movies, the mall, or football games like everyone else my age was getting to partake in. I was missing school and when I was able to attend classes missed half of them because I spent most of the time in the bathroom vomiting. It was a real struggle to go through... trying to deal with what was happening to my body and still trying to be "normal." It was also challenging because people didn't believe that I was actually sick, they thought I was making it up, doing it for attention, you name it. It was already really hard on me physically with what was going on with my body and not being able to control it, but I had lost most of my friends because they didn't understand what I was going through. 

I went to Nationwide Children's Hospital, January 2010, in Columbus, Ohio for further testing and to see about further treatment. I had a 9 hour test there called an Antroduodenal Manometry. This was how they diagnosed the Visceral Hyperalgesia. For treatment options, I tried two more medicines but they did not work and gave me bad side effects. The other option was the Gastric Neurostimulator also known as the Gastric Pacer. 

 (Here are photos from when I had the antroduodenal manometry test done in Ohio)

I had my Gastric Neurostimulator implanted on March 18,2010 at The Cleveland Clinic in Weston, FL. Dr. Rosenthal, my surgeon performed the surgery which lasted about 45 minutes and then I was in the hospital for 24 hours after that. After getting out of the hospital I started keeping solids down again, it was amazing.

                  (This was before my Gastric Stimulator surgery in pre-op)

 

I started to eat more of a variety of foods and actually keep them down for the first time in a long time. I went from vomitin 10-12 times a day to 1-2 times a week. I have to make sure that my settings are adjusted every so often when my symptoms come back in full force but that is just a matter of using a Medtronic device to program my stimulator.

After getting the Gastric Stimulator it worked great for awhile. My GP symptoms were still present but had reduced in how often. When I would start vomiting more often and wasn't able to hold my food down and would get dehydrated they would adjust my settings with the device pictured above and it would help me start feeling better. 

In March 2012, I started to get really bad flare ups with my Gastroparesis again and even with adjusting the settings it didn't help. We found out that my leads of my Gastric Stimulator had protruded through my stomach wall. I had to have surgery to get the leads replaced so that it would start working again. However even with the leads being changed I wasn't getting the same relief as before. I was not tolerating anything by mouth. I started getting dehydrated more and more, losing weight, and vomiting all of the time. The hospital was basically a second home at that time because I was inpatient for so long. I was getting malnourished and the doctors put me on TPN and placed a hickman so that I would be getting nutrition through my veins. I was TPN dependent until December of 2012, when they placed a G/J feeding tube in my abdomen so that I would get formula through a tube to get my nutrition because the TPN was affecting my body. 

(My G/J tube after surgery. The G part is the part of the tube that I use for venting my stomach out to help with nausea. The J part is the part I use for my feedings, it bypasses my stomach and goes into my intestines)

I went over a year without eating or drinking anything by mouth. In March of 2013, I went to a motility specialist at the University of Miami and also saw a Medtronic representative who checked my Gastric Stimulator and saw that the battery had died. This meant I could finally get a new stimulator and I was praying that it would help me as good as it did the first time. In April, I ended up getting sepsis, a bad blood infection and they had to pull out my hickman that I had kept for IV access. That was probably one of my most scariest experiences so far because if not taken care of it could be fatal. 

In May of 2013, I got really sick with a bad Gastroparesis flare up and was in the hospital from May 2-June 5. I wasn't tolerating my tube feedings very well, dehydrated, had tons of pain and was trying to get a new battery still for my Gastric Stimulator. The problem was I had to be healthy enough to undergo surgery, so I spent most of May at St. Josephs Hospital North where my GI doctor goes trying to get healthy enough to where I could have the surgery. I was transferred to Tampa General Hospital where the surgeon is out of so that I could have the surgery to get a new battery. After having the surgery and getting a new Gastric Stimulator which was placed on May 30, 2013, I stayed in the hospital trying to handle the pain and be able to tolerate liquids again. This time it didn't work right away like it had the first time. I was discharged and had been home for about a month before I was able to tolerate liquids again. The first time drinking something was so amazing. After a couple weeks of tolerating liquids I was able to start tolerating solid food again! I'm still not able to get enough calories by mouth so I still do my tube feedings as well. 

 I also deal with several other chronic illnesses in addition to Gastroparesis such as: Visceral Hyperalgesia, Raynauds, Myofascial Pain Syndrome, Fibromyalgia, Spina Bifida Occulta, Eosinophilic Gasroenteritis, on and off Pancreatitis, low platelets, and some other things as well. 

I want to focus on my Gastroparesis issues mainly with this blog and documenting and sharing how my pregnancy goes with having Gastroparesis, the gastric stimulator, and a feeding tube. 

Being sick really makes you realize not to take anything for granted and to appreciate everything in life, the good, the bad, the ups, and the downs. I know that even though sometimes it is hard to see that everything will work out the way it is supposed to. I don't like being in pain and suffering but it definitely has made me stronger as a person. I'm very excited for this next chapter in my life with being pregnant, having a wonderful boyfriend and seeing what happens next. In my next entry I'll talk more about being pregnant and what that is like so far, but I wanted to include my story to give you an idea of what I have been through and where I am coming from.

Stay tuned... :) 

Thanks for reading and I hope everyone is having a wonderful day!

~Megan

"Don't lose hope you never know what tomorrow may bring"