Gastroparesis and the Fight
Last week I was in the hospital for dehydration. Luckily I was able to leave before my grandfather’s funeral, two hours before to be exact. I made it to the funeral with my slippers on because I didn’t have time to get my dress shoes from home. I was so glad I got to go. Today was my follow up appointment at the gastroenterologist at Vanderbilt. I will say that today my doctors failed me miserably.
I was ready to go with my list of questions and my list of things I can no longer do. I had quite an extensive list of both. I got to ask none of my questions at all and my doctor simply glanced over my inabilities before he got his instructor to come in and tell me there was no reason I could not do the things listed. To give you an idea the list is as follows;
Home
Cannot shave legs – causes pain in abdomen
Cannot tie shoes
Can’t pick up 3 year old
Cannot use dust pan
Cannot pick up floor
Blood Glucose is difficult to manage
Cannot have sex
Can’t load/empty dishwasher
Can’t load/empty dryer
Can’t clean litter boxes
Can’t feed/water pets
Can’t have 3 year old sit on my lap or cuddle
Can’t give toddler a bath
Having trouble concentrating
Can’t change toddler’s diaper unless toddler is at waist level
Work
Can’t eat at work
Nausea meds make me tired
Prolonged speech can cause nausea and vomiting
Can’t sit for long periods of time
Get car sick
Have infrequent breaks
Need a trash can near desk
Surprise vomiting (caused by a burp or cough)
No pain management
Having trouble concentrating
Anyone with GP can tell you these are perfectly logical as bending at the waist can cause pain, nausea and vomiting, while sitting for long periods makes the stomach even more sluggish. I even wrote y doctor a nice missive in case he did not let me talk;
I cannot work like this. Between the pain, nausea, and vomiting I cannot function as a human being. I don’t wear pants because bloating is an issue. I don’t wear tennis shoes because bending over can cause vomiting and abdominal pain. I feel like a useless person, as if I am a failure to my family. Shopping is an adventure because there is no telling if and when I will vomit or if and when the stabbing pains will hit me. I am filled with anxiety when I have to leave the house. At home after I eat or drink I keep a large cup nearby for when I vomit. There is nothing quite like running through Kroger or Target to get to the restroom with a mouth and hand full of vomit. Unless that is running from your desk the same way so as not to set up a vomit chain reaction.
After all of that and all the doctors could say was there was no reason I could not do those things. I got to ask one of my fourteen questions today; what to do about work. The answer? I was told I could go back to work tomorrow. I have lost faith in my health care system. I am vomiting up my guts, I have lost fifty pounds in five months and the anti nausea medication isn’t working not to mention they have taken me off all pain medication and I can go to work tomorrow. What about all my questions they didn’t have time for?
What are our options for long term treatment?
What are the side effects of taking erythromyacin long term?
How are we going to treat nausea?
What is our plan for dehydration?
Can we get home health for emergency fluids?
Will my nutrient absorption continue to drop as the disease progresses?
Is a 50 pound weight loss in such a short time cause for alarm or are we waiting until I get to a “normal” BMI to worry about that?
Is it okay to only be drinking two Boost shakes a day and can I live off of that?
Why is my hair falling out since my thyroid levels are good, is that a sign of a nutrient imbalance?
What is the short term treatment plan? What are we going to do about this right now?
What is our action plan for when I have another flare up?
Will an NG tube be a treatment option?
Will this disease eventually leave me disabled?
But instead of getting to ask these questions the good doctors at Vanderbilt instead told me, when my SO spoke up about how working would be near impossible because of the vomiting and pain, to deal with it.
I know this post is going off to rant land but I am absolutely appalled! Deal with it, there is no reason you can’t do those things, return to work tomorrow. I fight every day to be heard. I fight for every scrap of medical assistance given to me. I fight every day from sun up to sun down trying to get enough nutrition to survive. I fight my stomach to keep it all down. I fight my insecurities so they don’t take over my life. I fight my insurance to cover testing and medical leave. And now I fight my doctors. I want to be heard, I want someone to listen and I want a doctor with compassion. Every day with gastroparesis is a fight. I cannot understand medical professionals that cause us to fight them.
This month is gastroparesis awareness month, help me spread the word so we can get doctors that listen and better treatment options. We can win this fight together! #cureGP
treatment options
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 