It all started my sophomore year of high school; February 14, 2008 I was 15. All of a sudden I got a cyst on my right ovary. It started at 3cm and kept growing the doctor I had told me that it hit 10cm they would have to remove it. Of course by the time it hit 7cm I was ready for it to be taken out but the Doctor said no. So I kept waiting. It wasn’t until it hit 9 ¾ cm that I fought for surgery…once again a no. So I got a second opinion as soon as I could. The new doctor, who is amazing, took more ultrasounds and said it was about to burst anyways. So he gave me pain meds and said wait about 4 or 5 days and it should rupture and I would start feeling better. So he was right. He even told me exactly what it would feel like and he was right on that too. Well that cyst soon turned into endometriosis. He diagnosed me with that September 2008 through a diagnostic laparoscopy. So I was put on birth control, I tried seasonique but the placebo pills made it all come back, I tried skipping the placebo and got sick. Then I tried the nuva ring…well kinda…just couldn’t stand it. Finally I am on Depo Provera but I have been on it for about 3 1/2 years now and probably need to switch to something else.
I then started to feel a little bit better for a few weeks. Then my nausea and vomiting came back hard core. Following the nausea was more excruciating pain. My primary care doctor then sent me to a gastroenterologist after proceeding to say it was probably another cyst. Well it was but also I had a colonoscopy and they gave me a band aid diagnosis of Irritable Bowel Syndrome.
Since I was constantly nauseated, vomiting, and in a ton of pain, I began doing lots of research and tried many diets and I just didn’t think that was the case. So I went to a pediatric gastroenterologist. He did test after test after test. He couldn’t figure it out for the longest time. I went through so many different medications. Erythromyacin, nexium, and amitriptyline, just to name a few. I don’t remember all the medications I tried. Spring 2009 I had my first gastric emptying study. That was when I was diagnosed with Gastroparesis. At that point in time It took over 7 hours for my stomach to empty. I was living off of 7-up, the occasional cracker and every once in awhile baby food. The doctor told me domperidone and reglan would be too much of a risk. I was finally referred to a surgeon for the gastric pacemaker after many other medications. About a month before surgery I had another gastric emptying study.. It then showed that my stomach had slowed even more, OVER 12 HOURS!!!. The surgeon said yes definitely we have to try the pacemaker and get it implanted as soon as possible. April 29th the start of my new life.
Everything was exceptional. I was feeling better, with the occasional pain. I was able to go to school and have somewhat of a normal life…. Up until my primary care doctor was doing a normal exam and messed with my pacemaker. After that life was miserable again. I barely made it through a day. I slept so much just to keep my mind off of the pain and nausea. Heaven forbid I ate anything, just because I didn’t want to puke. We changed the settings on the pacer hoping to help. It did for about a week, so we once again changed the settings. It worked a little bit longer but didn’t cut it. It was when we hit the last adjustment she felt comfortable with that it finally worked, July 1010.
Well by September it was getting bad. This time I started getting super bloated, even by drinking water, I also wasn’t able to keep my food down again. I was trying to go to college, but my new gastroenterologist, since I was 18 at this point, told me it would be wise if I would take the semester off. So 2 weeks living in the dorms and 1 week of classes I had to get deferred enrollment. I have been home fighting ever since.
On November 16, 2010 I was helping my step sister move. I leaned over the front seat as we went looking for a water bottle when the driver hit 2 huge speed bumps. I came down really hard on my pacemaker and landed on the hard plastic part of the middle seat. After that I started having extreme shocking and nausea. After a week I went to the hospital, November 27th and was admitted by my surgeon’s on call doctor. The Medtronic’s representative, Liz, and my surgeon decided to redo my pacemaker surgery and replace the whole device.
Once again it worked for about a month.. Then the shocking came back. I went back to living off of baby food and this time I could tolerate Gatorade and occasionally mashed potatoes. I also lost a lot of weight. In January 2011 I had a nasal Jejunal feeding tube placed. 5 weeks later I had a permanent Gastric/jejuna l tube placed. It worked wonders. I gained my weight back in 2 weeks. However the angle of the tube caused problems… I had to have it replaced the end of February.
In March 2011, I moved to Washington because Idaho State Medicaid kicks you off at 19 unless you are receiving disability benefits. So I moved 2 months before my birthday. I immediately got state medical in Washington and also started applying for disability.
After waiting 5 months and many E.R. visits, I finally got into a Gastroenterologist at the University of Washington Digestive Disease center. After seeing the doctor he decided I needed a new feeding tube since I was having more problems with the one I had. I switched to a Mic-Key Button (Low profile tube) and Love it! I also had a small bowel series done and it showed that so far the motility of my small bowel has not been affected too severely.
August 2011, my grandparents kicked me out. I had nowhere to go but my cousin’s house in California. Things were good for about a week. Then my health started getting bad again. I became severely malnourished and ended up in the hospital. They kept me for 3 days. They ran TPN and tube feeds to help get me back to where I was supposed to be. The stupid nurse tried to check the residuals on my J tube and made it flip back up into my stomach… They sent me home. That night I ended up at a different hospital. My feeding tube wasn’t working properly… go figure! Since it was a Friday night they admitted me. The next Tuesday they replaced my feeding tube and then sent me to another hospital to get my malfunctioning pacemaker removed. A week after surgery I ended up with pneumonia and was readmitted to the hospital.
The stress at home was horrendous. I lost so much weight and was not tolerating my tube feeds at all. I couldn’t even run them at 5mls/hr. My parents decided I needed to come home back to Idaho so they could take care of me. A week later I was on the plane. I am now tolerating my tube feeds… really slow but tolerating them at least. I am so glad to be back in Idaho!
