Posted by on Feb 25, 2015 in Blog | 111 comments

Below is a guest post by Melissa Adams VanHouten who suffers from gastroparesis. But first…

What is Gastroparesis?

Gastroparesis [GP] is a serious disorder in which the stomach does not empty its contents into the small intestines. Normally, the vagus nerve stimulates the stomach muscles to churn and break up food we eat. That food then moves on to the small intestines where nutrients are absorbed.  If there has been damage to the vagus nerve, the muscles of the stomach can stop working properly. Vomiting, pain, weight-loss, dehydration are just a few of the symptoms. Often the cause of GP is unknown, infection or damage because of surgery could cause it.  The only known cause of GP is diabetes and GP makes diabetes difficult to control. There are medications, surgeries and lifestyle changes that may help.   Like other “invisible” or “but you don’t look sick” disorders, more research is needed.

Post by Melissa Adams VanHouten

gastroparesis

In early February 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis. [GP]  Most people have probably never heard of GP; I know I hadn’t, prior to being diagnosed.

Overnight, my life changed in unimaginable ways.  One day, I was able to eat at buffets, the next, unable to tolerate all foods and liquids. Hospitalized with severe pain and vomiting, doctors put me through a battery of tests, made a diagnosis, gave only a brief explanation of my illness and its treatment, and sent me home. For the next few weeks, I was on a liquids-only diet, and told to gradually work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has occurred. I am able to eat some soft foods, in tiny amounts, but it is becoming clear that I will never again be able to eat “normal” foods in “normal” amounts.

At first, I told myself that this stupid disease wouldn’t define or control me – it simply WOULD NOT be the center of my life. But as time passes, I see how foolish that was. Every single day, every second of every day, I think about food. I see it; smell it; cook it and feed it to the other members of my household; but I cannot have it myself. I look in the mirror, and see a skeleton.

Trying to eat even small amounts of food leaves me in agony. I am fatigued to levels I didn’t think possible. Some mornings, I don’t have enough energy to get out of bed. I can barely concentrate enough to do everyday tasks. And almost every single night, my husband has to help me up the stairs to bed because he is afraid of my falling down those stairs. My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. It has frightened her so much that she has asked my husband to get me “Life-Alert” for the times when she cannot be home with me.

I grieve because I can’t travel or get out of the house. Missing family events, being unable to attend my daughter’s activities saddens me.  I grieve over being unable to go out to eat, or on a picnic, or to another concert.  Most importantly, I worry that I won’t see my daughter graduate, get married, or have children.

It’s frustrating because people don’t understand how my life is affected by GP. If you saw me on the street, you would probably not realize I am this sick.  I don’t look that sick. And because most people are unaware of the effects of GP, they ask me all of the time if I am okay now. Convincing them that I am never going to be okay again – not in the way they mean it- is impossible.  People tell me “you just need to eat,” or they say,  “if only you would try ‘Activia,’ you’d be okay.” My own primary care physician accused me of being an anorexic and told my husband to “watch me.” And though I know people mean well and are trying their best to help, it is still frustrating.

I am angry because I do not like being a slave to this disease. I do not like having to rely on others.  I am angry because I do everything that I am supposed to do – eat the right things, exercise, and ingest the known medications – and I am still sick.  There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die.  He doesn’t – and I am so thankful that He ignores those moments.

It is hard to believe, but there are others with GP who are much worse off.  There are thousands of posts in my Facebook feed  every day from people who have had to go to the ER or back in the hospital for dehydration, pain, or other such conditions. So many people have feeding tubes or ports for nutrition. Many have developed other serious conditions because of GP and sometimes, looking at them, their experiences seem to surely be my future, too, and it scares me.

Yet I am thankful for the support I receive from the GP community.  You can’t imagine the blessing online groups have been. I have learned much, for sure, but have received so much more than information. Understanding, kindness and friends that I feel I have known for a lifetime, abound. Although I hate this disease, I dearly love all the people I have met because of it.

But despite these blessings, what it really comes down to is that I am tired.

Tired of doctors who do not understand or do not care,

Tired of excuses as to why they cannot help,

Tired that my friends’ (with GP) pleas for assistance are being ignored and they are being treated like drug addicts because they want relief from their pain.

Tired of being mocked and dismissed as if those with GP have “just a stomachache.”

I want treatments that work or better still, a cure. I am weary of trying to pretend like all of this doesn’t matter — or that it has its place elsewhere and not out in public.

We need awareness and then some. We need help and advocacy. We need treatments. We need cures. We need a year in which no more of us suffer and die.

 

Post Script

****To better understand living with hidden, “but you don’t look sick” disorders go to  What’s Up With All the Spoons? Spoonies .

In the comments below, Melissa has added important links for those living with GP and their families. I have moved this to the post to make it easier to find. Pay special attention to the survey link and the link to communicate with the FDA. Providing the FDA with the personal experience is crucial to increase funding and expedite treatments.

Melissa’s Comment

The IFFGD (International Foundation for Functional Gastrointestinal Disorders — http://www.iffgd.org/) has posted a survey that seeks to collect data regarding the impact of GP and its symptoms on your daily life. If you are interested in participating, the survey can be found at this link: https://www.surveymonkey.com/r/iffgd-GPsurvey
In addition, the FDA will be holding a “Functional GI Disorders Patient-Focused Drug Development Public Meeting” from 1:00 to 5:00 PM on May 11, 2015. I would encourage any of you struggling with GP to consider joining the FDA webcast and submitting comments and replies to the questions posted on the FDA docket. You can find information about this panel and register for the webcast at http://www.eventbrite.com/e/functional-gi-disorders-patient-focused-drug-development-public-meeting-registration-15203090854. If you would like additional information or assistance with registering or submitting responses, please do not hesitate to contact me. If you click on the words “Facebook feed” in the above article, you will be directed to the Gatsroparesis: Fighting for Change community page (https://www.facebook.com/Gastroparesis.FightingForChange.Page). You will be able to post or send a private message from that site.