Think back to the last time you had to stomach flu or food poisoning, remember how the smell or even through of food would send you running to the bathroom retching? Think about how for twenty four hours you lay in your bed thinking the world was ending, declaring you were dying, and that you just couldn't take it anymore. Imagine feeling like that every single day of your life...I do along with millions of other people. We suffer from a disease known as gastroparesis and some also struggle with pseudo obstruction disorder, in short we call it digestive tract paralysis. It is a debilitating condition to which there is no cure and very little awareness. Even people in the medical profession don't understand it so they tell us it is our head because it is also known as an invisible illness, there is no reason as to why our bodies won't allow us to take in nourishment, but we can't.
I was diagnosed in 2008 via an endoscopy and gastric emptying study. I was constantly bloated and couldn't stop throwing up no matter what we tried. We found out the hard way that I was allergic to the medications generally used to help treat the disease and I just kept feeling worse and worse. In early 2009 I went in to see the surgeon to have a j tube put in (had one previously for other reasons) and he told me that he could fix me. He said they discovered that a sleeve or partial gastrectomy could make it to where I could eat again. He said the procedure was originally designed for weight loss and given that I was barely at a normal weight at that point I would have to have a j tube put in as well. He was a doctor and I trusted him...I was wrong. The surgery was the most painful experience I've ever gone through and left me unable to even sip water. He made the procedure irreversible so now I only have five percent of my stomach left.
Eventually, I started having trouble tolerating my tube feedings and having massive amounts of pain. They informed me that my intestines were now beginning to fail and I was suffering from malabsorpton which is not uncommon. I would be admitted to the hospital for them to manage my pain and then sent home for the cycle to start again. Finally, they pulled my tube and put in a central access and began IV nutrition. I had to have a fistula take down to get the stoma site to close. Besides a bout with bad sepsis the TPN did wonders for my energy until I miraculously got pregnant with Damien. At 11 wks along I had my third jejuneostomy. Feeds were still hellishly painful and I had to be on pain medication to keep them high enough for him to grow. by God's grace my son was born perfectly healthy leaving me with dangerously bad labs. Things seemed okay for awhile and then my stoma site started to pour bile, tube feed, or anything I managed to drink orally out filling up an ostomy bag up to three times a night. Eventually, it meant more surgery for another site to be placed which ended up with massive complications.
All in all I've had four jejuneostomies, six different port placements due to infections or malfunction, countless surgeries and painful procedures, many night spent sleeping in the ER, and long hospital admissions. I'm hydrated through the port in my chest and I will be seeing the surgeon on Tuesday to have another fistula take down and we are going to try a G tube rather than J this time since when dumping feeding directly into my intestine is causing rapid emptying with no absorption. There is talk that I will go on TPN for a week or two to get my strength back up and give me some gut rest before we start the new feeds. I am twenty seven years old and can't walk long distances without a walker. I've been told by the docs that if things don't get better or we find a different plan my body isn't going to last another five years. I'm still battling acute kidney failure which I'm hoping gets better before they change the word acute to chronic. Starting on Tuesday I will wear a heart monitor for thirty days to evaluate my rapid heart rates and palpitations. This is just my story, there are many more out there like it, many who are worse off than me.
When we are lucky enough to find a doctor that doesn't tell us it is in our heads there is still not much that can be done. they simply manage symptoms...hydrate us when we are dry, nourish us when we need it, manage pain, and nausea. Going out with friends becomes a huge deal, can we sit close enough to the bathroom just in case I need to run, is there anything I can tolerate on the menu, and the whole time you are sitting there wishing you could eat the food that everyone around you is. We carry backpacks with tube feed and TPN in them while trying to live as normal life as possible. There are days when we are too sick and weak to get out of bed and have to cancel plans, we lose friends because they can't handle dealing with the disease.
DTP does not discriminate it can attack anyone no matter how young or old they are, what they look like (people expect us all to look emaciated because we can't eat, but there are quite a few people with DTP that are very ill at normal wt if not overweight), and it can be fatal. We lose people everyday to these diseases and still we go unnoticed. We deal with ignorant ER docs and even hospitalists who refuse to accept something they can't see on paper. We live in fear that our hearts will give out from malnutrition, that the next line infection will be the one we can't fight off, or we go in for another surgery and don't wake up. We have families, we have kids of our own. It is a very scary existence to live, constantly living in the unknown.
The reason I'm posting about this is because the only way to spread awareness is to talk about it, scream it from the mountain tops, and not be afraid to share your own story and experiences. It can be a very isolating disease because most of our loved ones can't understand. When I first met Josh he thought with enough will power I could control it, i could take my three bites of solid food and when it tried to come back up I could just resist, what he didn't understand is that resisting it also meant massive amounts of pain. I fought so hard to try and do better for him that I ended up in the hospital obstructed. We need a cure, we need better treatment options, our last stitch hope at survival generally means a very dangerous five organ transplant that makes for a whole new mess of complications. I hear of friends dying from this everyday, babies are losing their mothers, husbands losings their wives and vice versa. DTP is not widely discussed like cancer or AIDS, it is an invisible illness that can kill very swiftly and because of how little knowledge is out there we are often sent to therapists and told it is in our head until something drastic happens.
It is easy to label us attention seekers or fakers because you don't understand...me and so many others are here to try to help you understand. When I was diagnosed I felt so alone, like no one could possibly understand what I was going through and I was lucky to find the G-PACT website which offers support and information for patients and families who are struggling with DTP. We have good days and bad days and that makes it harder for people to understand, one day I could be able to go for a short walk to the park with my walker and other days I lay curled up in a ball holding a bucket while Josh cleans up my puke or holds me when I'm dry heaving blood. I feel like for me this disease has taken my pride away, I've always wanted to be in control of my life and my body and now I have to depend on others, there are days that I can't walk to the bathroom without help. I am blessed to have a beautiful little boy and a great support system that makes sure no matter how sick I am he is always having fun, it is part of the reason we moved close to family.
I'm not expecting this one blog post to make a difference or help people completely understand, but I'm trying to open up a forum here. Ask me questions, I'm not ashamed of my disease or my past. The doctors and their statistics say I won't live to grow old so I'm going to scream out awareness as long as I have breath in me. I don't plan on being another statistic, I believe in miracles and I still hold faith that we will be heard and a cure will be found. Please keep an open mind and spread awareness because the next person this disease strikes could very well be you or someone you love.
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