Gastroparesis Awareness...We have to do something

     I made this video awhile ago to give the world a little bit of a look into what it is like to live with gastroparesis and other motility disorders. I know people who have watched it and they still don't get the severity of the disease, or the fact that it claims many lives every year without discriminating...young, old, black, white...this disease doesn't care.

     Let me paint a picture for you, I want you to think back to the last time you had a nasty stomach virus, and I mean just the most wretched virus you have had in ages. Imagine yourself on the floor hugging the toilet bowel begging for mercy as another round of retching takes over, but wait this time as you are emptying out what you believe has to be the last of anything left in your body your stomach makes a gurgling sound. You know the sound that I am talking about, the alarms are going off as you fight to your feet, pull your pants down, only to find yourself spewing liquid from both ends. You beg and plead with God to make it stop, making promises that you won't keep once you are better (everyone does that don't feel guilty). When you finally get a break you find yourself practically crawling to the nearest bed or couch beckoning your spouse, parents, or whoever to bring you water and put a fresh wash cloth on your head. This goes on for a few days, but eventually you are able to look at food again, take in nourishment, drink some water, and soon enough you find yourself back on your feet ready to face life out in the real world. Now, for just one minutes imagine that the relief you feel in that moment never comes. You know understand the world of digestive tract paralysis...gastroparesis, pseudo-obstruction disorder, short gut, and other motility disorders.

     We live everyday facing the symptoms of these diseases, and there is no cure. There are medicines that can help the symptoms, but for some those medications cause horrible side effects leaving us with no options, but to deal with the symptoms as they come. Our lives become countless trips to the emergency room, admissions to the hospital, needles, tubes, unable to work, and countless other things. All the while we are facing these horrible symptoms with our disease, the debilitating pain we run in to people that tell us that it is in our head and we just need to "buck up" and get it together. They want to make us feel bad for being on disability because they feel that you should be able to work for just a "tummy ache".

      Let me tell you my story...I was diagnosed with gastroparesis in 2008, in 2009 they did what they call a sleeve gastrectomy or partial gastrectomy that is often done on overweight people, but in my case it was to increase emptying. They took me into surgery at 23 years old and removed all but 3 percent of my stomach and put yet another j tube in my intestine to feed me. The months passed and things just kept getting worse, and before long it became apparent they had to do something else. They put in a central line and started TPN, which is nutrition given directly into your heart. I was told I would never be a mom or live to be thirty...I have a five year old little boy and I turned 30 in December. It has been a hard road, and I have been labeled terminal. I have had countless central lines that have gotten infected, twice I went into septic shock and could have died. I have had countless surgeries for tube placements, fistula take downs, and wo years ago I went through a very, very long surgery where they made a ten inch incision in my gut and they removed part of my intestine, took down two fistulas, and replaced my feeding (that we only use to vent to help with vomiting). I am dependent on the hickman central line in my chest to get the fluids and vitamins I need, and will go back on TPN when we have exhausted options, they avoid it since I am so prone to infection and the kidney damage alone with the heart damage makes me a high risk. I will need a transplant to see my son grow up. I'm 30 years old and I need a walker or wheelchair to go anykind of long distance. I am diagnosed with gastroparesis and short gut meaning that I don't absorb things in my intestine, I have a seven minute transit time, which is unbelievable fast. That is just my story there are many more like it and worse off than me.

     The only way things are going to change is if we change them, if we spread the word that something needs to be done about this, more research, more funding, more coverage for those of us trying to get treatment that some person behind an insurance desk decides we can't have. I am going to fight until I have no breath left to beat this disease, to see my son grow, and to hopefully see so many of my friends beat it too. I look forward to a day when we live in the world rather than in a hospital bed. We need your support. If you have any questions or have interest in donating to the casue please check out G-Pact.org for all the information you could possibly want. God Bless and keep fighting!