As a part of DHA Virtual Advocacy Day it is time for us to be heard! If you are to share any post today on social media please let it be this one to help others be aware how serious this is and what a huge impact this has on the lives of those trying to live with these conditions.
As most of you know from my past Etsy shop closings, surgery announcements and GoFundMe posts that I have gone through the ringer both physically and mentally from my digestive motility disorders.
That is why I want to make everyone aware of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015 (HR 2311) and why we need to spread the word to get it passed! More needs to be done but this is a great start that could open many doors!
Here are a few of the key points about the act as noted on the DHA website:
- HR 2311 is budget-neutral, it does not require additional costs to implement.
- Functional gastrointestinal and motility disorders affect 1 in 4 people in the US – men, women, and children.
- The conditions are a serious issue for many military veterans – part of
- Chronic Multisymptom Illness (or Gulf War Syndrome).
- The conditions involve improper functioning of the nerves, muscles, and related mechanisms of the digestive tract.
- They are chronic and some can be life-threatening.
- These conditions are often misdiagnosed or mistreated.
- Currently, treatment options are extremely limited, not always effective, and focus on symptom management – no cures are known.
“Public awareness is critical to advance research and improve care for people affected by FGIMDs. The more we spread the word and talk openly about these conditions, the greater our ability to make connections with people who can benefit from our support and raise the funds needed to provide it. A higher profile can translate into larger federal investments in research activities and a stronger commitment from industry to develop new treatment options. By speaking out with us, you can have an impact on improving the quality of life for those suffering with digestive diseases”.
Educate our doctors! Digestive motility disorders are not being taken seriously enough and doctors are leaving patients misdiagnosed because they are not as educated as they seem. For example, I was told by numerous doctors ” it’s just IBS and heartburn”. I wish I could take all the thousands and thousands of dollars that I paid to those doctors who wasted my time and donate it the medical debt of the courageous people in the online health forums who shared their stories with me and actually gave me some sort of direction. It took YEARS to get any sort of actual action to help better my situation. I had to do my own research and went through doctor after doctor and every procedure/test possible (and mind you some are on my list of the most uncomfortable experiences of my life, not to mention racking up more medical expenses instead of answers).
Who begs for a colonoscopy because the dr doesn’t think of it and you are desperate for answers… this girl (and I am sure I am not alone).Who goes to a surgeon in tears begging them to cut them open after being told there is no surgery for what you have… this girl.That is the mind set you have when you suffer from these disorders. You have to fight for answers and become desperate for a cure. And even a cure including surgery is not the end all. You may live a better life if you do find an answer but you are never normal again and you have to adjust every aspect of your life around it.
Some people are given pain medications which make some of these conditions worse! If need be add these conditions to the medical marijuana list… but get people the treatment they need to function. Get these doctors educated! Get this research moving forward!
I finally sent my case to Mayo Clinic in Minnesota who at first denied me and told me the doctors out here were equipped to help me! What a joke. However thanks to an online friend who I communicated with on the AGMD Inspire.com boards I was able to get the information I needed to reach out directly to Dr. Michael Camilleri who not only was a motility specialist but the head of research! That man read my story and got me in to see him. He is the reason I am where I am today. There needs to be more doctors like him out in the field! I had to travel out of state numerous times to see him (thank god I had help from others through my gofundme site so I could afford to go) but I finally got some sort of answer. Thanks to him they discovered through more tests and procedures that my large intestine had not been working for years and had to be removed. My surgery did not go as smoothly as planned. I had many complications and was in the hospital for almost a month vs a week. I even had to have a 2nd surgery once I was home for a few weeks. Then the following year I had to have my gallbladder removed because that stopped working too. I would say that’s a lot more serious then IBS and heartburn. The sad thing is no one… to this day can still tell me WHY! I have no idea why the organs in my body shut down and had to be removed. I know that they were double in size because it took doctors YEARS to figure things out what was going on with me which in turn made my condition that much more worse. I donated my 10ft long large intestine (a normal one is 5ft) to his research team to help others like myself so that maybe they can figure out why this is happening.
Thanks to Dr. Camilleri, I was assured that for once in the many years of my suffering that I was not crazy. Because believe it or not some doctors actually made me feel that I was. He wanted to assure me that after all the frightening complications I experienced during my surgery that I made the right decision. I received an email and photo from him….
“I have seen the pathology on the special studies that were done on the nerves in the colon resected specimen. There was a marked reduction in the nerve cells in the wall of the colon, and I am attaching a figure that you might want to have framed! The white and grey cells on the black background represents the nerves.”
Fix our food supply! Something also needs to be done to stop making our conditions worse (or possibly causing them) by adding hormones, preservatives, additives and soy in our foods! Take away false leading labels and add more info so people have a choice on what they consume! Make healthy food affordable to Americans so we aren’t tempted to eat terrible food because in this economy a 99 cents cheeseburger is better on our budgets then a $8 garden salad! That would be a great start as well.
Try working with a digestive disorder: I have almost lost jobs and been written up on accounts of missing work because I was in so much pain or having other issues that would not allow me to function from my conditions. This includes the years of suffering as the doctors were trying to figure out what was wrong with me. Using up all my vacation days for tests and procedures. I was literally on the operating table for a 2nd emergency surgery and my past employer said I would be fired because I was not at work and my FMLA ran out from the 1st surgery. Sorry that I had an operation and my body didn’t adapt the way you wanted and I had to have another one. I will be right back in tomorrow to make sure I am sitting in my cubicle! Insane! Needless to say I quit that job and even after all the surgeries I still have to live with the new way of life and eating that comes with missing parts of my digestive track. And even if there are more good days then then bad (in comparison to before surgery) I still have to make adjustments and live differently then other people. I still occasionally have to miss work because something doesn’t agree with my system and I physically can’t. We need a better understanding of this in the work place so people do not lose their jobs! More conditions need to be approved for disability and more work from home positions need to be made available! Try making a living to pay your medical bills when you can’t work!
Try not to effect the lives of you loved ones: These conditions also effect the lives of loved ones and family members. There are times they have to take care of you, work harder, worry and stress about the condition while still being a support system while you are sick. Shoot even my husband lost a job because he is my care taker and needed to be there for me. all the medical back up in the world didn’t matter.
Try explaining to people about your embarrassing “issues”: People are afraid to speak up and talk about their situation because its a sensitive situation. How do you explain to people when you socially can not interact anymore. That your afraid you might get sick when you are away from home. That you might be running to the bathroom or sitting on the toilet in pain all night instead of going out and having a good time. All people think is “she’s sick again”. Not to mention others who think you are jumping some sort of diet band wagon when in reality if you eat something we can be hospitalized!
Some are afraid to see doctors and others are depressed because they think they are alone! This needs to stop and more options need to be made aware for people.This is becoming more common then people realize and it’s alarming. Something needs to be done! We need to be heard and we deserve to live fulfilling lives!
If you are reading this, I thank you for taking the time to do so and hope you will share it so you can help us be heard. Pass it on to state officials, congress and anyone you feel might be able to make a difference. If all else fails just sharing it with your social media friends will help it go viral and also give others an understanding of what it is like for people who suffer with these conditions.
For those of you who are suffering you are not alone. Feel free to read my journey and reach out to me as well as the many other wonderful people on the inspire.com boards!
Trust Your Gut!