Gastroparesis, What?!?
Gastroparesis, what in the world is that? I could bore you with the clinical definition but in short this is a disease where the stomach slowly becomes paralyzed. Why am I writing about it? Well I recently joined the nearly 5 million Americans that have this disease and let me tell you the experience is much different from the definition.
Definitions are nearly almost cut and dry no room for question, but living gastroparesis is anything but cut and dry. I’ve known something was wrong for a while because I would get very frequent nausea and vomiting. In fact it was becoming so frequent my PCP actually brought the fact to me when I went in her office for another bought of vomiting. “Pattycakedoll, you seem to be having this issue a great deal. I am setting up an appointment with a gastroenterologist.” Then whiz, bang, boom, I’m diagnosed with gastroparesis and here we are talking about it.
I just thought the kids kept bringing me home school presents of 24 and 48 hour stomach bugs that would sometimes leave me feeling sickish for weeks or months after. I thought the stomach pains were normal for after my C-section. Nerve damage can sometimes happen and my OB/GYN said it was normal. I couldn’t stand to have my stomach pushed on which when you have a toddler is a constant thing. There were days when all I would eat was a snack bag of chips or a bowl of cereal and then there were days when I felt as if I would be hungry forever. The day i went to my PCP and she said this to me I had lost five pounds from my visit three days prior. By the time I saw the gastroenterologist the next week I had lost an additional two pounds. That’s seven pounds in three weeks, but that isn’t too bad right?
Fast forward to nearly four months later and here I am typing this up forty pounds lighter. On average I have lost 10.5 pounds a month. Not too bad when you take in consideration that I am obese. The mouth sores however were terrible. The stomach acid was burning my mouth because I was vomiting so much. I was regurgitating after every meal and I use the word meal loosely. My PCP eventually had to prescribe a numbing mouth rinse just so I could get some relief. The stomach pain was so bad I ended up taking a strong pain pill, but I could not take that long term since it slowed the digestion even more. With the nausea, vomiting and stomach pain you can forget about working.
I tried to go back to work this month but to no avail. I gave it 100% though. One day I had to leave my training room and sit crying in the hall because the pain was more than I could take. I ended up getting a liquid medication that day to help make my stomach move but it did not work so great because later that week, same thing. I finally decided that maybe my gastroenterologist wasn’t having my best interests at heart so I called another for a second opinion on treatment.
That brings every one up to date. I’m going tomorrow for an edoscopy which should have been done before a gastric emptying test, I’ll go into that at another time, but it wasn’t. I just want to bring awareness to this disease because before I was diagnosed with it I had no idea what it was. I had never heard of it and I knew no one that had it. I have done tons of research on it in the four months I have known I’ve had it and I am hoping to share what I have learned with all of you. My blog has changed, no more artsy stories, no more bleak poetry, just gastroparesis. Why? Because I know there is someone out there right now where I was four months ago, scared, with no clue of what gastroparesis is, how they got it and what’s going to happen to them next. We are each of us different, there is no gastroparesis norm. You can have high motility but terrible nausea and vomiting or you can have no motility and never feel sick. Know that you are not alone and no it is all not in your head. We need a community and people to help us bring the word out.
Help me please by taking time to sign this petition http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/?m= Many of us with gastroparesis cannot work due to the pain and other associated symptoms. Please help raise awareness.
pattycakedoll 