This one took me a few months to make. I wanted to make sure it had more information in it to show what everyone might experience when diagnosed with this horribly under-diagnosed disease that has no support from the medical field or awareness. It is easier to say that these symptoms we experience is “all in our heads,” than for them to admit that they simply don’t know or understand the disease. All we want from them is for them to say that, and for them to offer full support by devoting time to look into this disease. It is a difficult one to understand, that is for sure. But, it can be understood. Even we know sometimes it is a neurological problem (often accompanied by other diseases such as neurogenic bladder, CIP and the inability to process and breakdown nutrients), a physical problem (the nerve to the stomach that tells it to contract is damaged), or is a symptom of diabetes (type I and II). Beyond that, we don’t know nor are we acknowledged. Sometimes we are ignored altogether. This is why I made this particular video. I hope it helps patients feel comforted; that they are not alone and that maybe physicians or other medical personnel can see first-hand what we go through on a daily basis, not just what they see in an office visit or hospital stay.

Thank you to those who contributed their photos to this project. Take the video and share it with everyone you know. Awareness is key. Keep the fight!

  • 2 Responses

  • julliet primeau says...

    This made me cry…a lot. I’ve been fighting GP for 3 1/2 years and feel like I have lost nearly everything. I have gone through so many doctors in an effort for support and sort of treatment. I have not progressed to tubes but I am in pain constantly and malnourished. I have no support system and I feel like I’ve let this consume me. I’ve stopped living…..you are so very brave and strong. I admire you. Thank you for being an advocate!

  • Amber says...

    Your videos are very inspiring and you’ve been dealing with this so possibly for a very longer while. I’ve noticed in your videos hospitals I’ve considered going to. In my state education is severely limited my surgeon and first gi seperately nearly killed me. I’m on gi number three who seems in no hurry to do anything or much at all. My primary has become an issue as well fighting everything I advocate for because what’s the use I’m not curable. I wasn’t diagnose but 8 months ago but it took them some time to figure it out. I was nearly dismissed so many times and it was all in my head. Uneducated gi’s in one office passed me around not believing a word I said. I was unable to do by mouth and it only professed very rapidly. I now have neurological damage from either a fall or starvation. My j tube was placed and I immediately had negative responses that were ignored and I was sent home my files look squeaky clean. Two days later I was rushed in for emergency surgery I was internally bleeding three hematomas. I left on TPN was on it 6 months until I had to fire my surgeon and move on.. she was only make me worse. Smart pill has told me my intestines are affected as well. I pulled myself off tpn and am pushing through tube feeds. But I have dangerous symptoms that are ignored by my medical community and many tests I know I need to have but cannot get. I was curious if you still lived where your videos depicted? I’ve been considering driving to Virginia Mason for some time now and would love to know who or how your expencince was or is. I’ve research Swedish too the knowledge but bedside manner worries me. I have ptsd from medical situations. Not only from this I have a mysterious body and have been sick all of my life autoimmune as a child in remission and pages of diagnosis with nothing adding up other than I’m seriously broken on my search to find a better team I could really use any great or bad experiences so I don’t waste my time.. again and risk my life again. Formula is rough given nothing is working but I push regardless I don’t know if I’ll ever end up back on TPN but regardless my veins are failing. I only have one or two left and none for surgical access those always have to be central lines. Hospital admissions are now a concern of mine due to this an iv will not hold long if at all. My husband and I have been figuring most of it or all on our own but we’re exhausted and I’d love to know if there’s a better option. For me even if it involves a drive. I’m not very far away.

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