Living with Gastroparesis

My name is Megan and I’m 19 years old. This is my journey and I want to share it to help anyone that is out there living life with a chronic illness. I have Gastroparesis, Visceral Hyperalgesia, Raynauds Phenomenon Syndrome, a Vitamin B12 deficiency, and some undiagnosed joint pain issues. I also have a Gastric Neurostimulator (pacer) to help my stomach work right. Gastroparesis is a chronic illness that I will have the rest of my life. I was healthy most of my life until 2007. Right after I had turned 16, I got a bad stomach virus which lasted for almost 3 weeks. This is when all my health problems started. I ended up in the Emergency Room with dehydration. After that I was still getting sick with vomiting and nausea and ending up being hospitalized 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.

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

I went to Nationwide Children’s Hospital, January 2010, in Columbus, Ohio for further testing.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(Enterra Therapy).

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.

Now I have had the Gastric Neurostimulator for about a year and a half now. I’m able to eat more variety in foods and actually keep them down. I went from vomiting 10-12 times a day to maybe 1-2 times a week. I have to make sure that my settings are adjusted every so often when my symptoms come back but that is just a matter of using a medtronic device to program my pacer.

I now am trying to bring awareness to this disease as much as I can. If I can help one person, then dealing with this illness is worth it. I’m trying to focus on the positive things in life and turn every situation and experience around for good.

On December 10,2010, I went to see my Rheumatologist and was diagnosed with Raynaud’s Phenomenon. My hands will hurt in the cold weather and turn blue because of the lack of oxygen that is flowing through. In January 2011, I had high liver enzymes and was in the hospital for 2 1/2 weeks. I also had become deconditioned from being in the hospital so long, that I had to use a wheelchair and a walker for a month until I gained some strength back into my legs.

I had my gall bladder removed laparocscopically on March 30, 2011, because of the severe right side pain I was having. I had a HIDA scan done which showed my gall bladder functioned at only 23 %. This helped so much and made the right side pain disappear.

Recently, I have been struggling with joint pain all over my entire body. I had been diagnosed with a vitamin B12 deficiency which I have been taking, but my problems seemed more than just that. I have seen a few Rheumatologists who could not figure out the problem. My GI doctor recommended that I see a pain management doctor to help with my pain. As of September 2011, I have been seeing a pain management doctor who is treating me like a person with arthritic pain. I have had nerve block injections on my Sacroiliac Joints and Lumbar Facets. Right now I am in the process of going through 6 radio-frequency procedures where they will cauterize my nerve endings to help with my pain.

I know that there is a reason for everything that is happening to me and I’m still very blessed and happy with my life even while living through these illnesses.

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