This is very long and may contain information/pictures that may make some people uncomfortable
My name is Shanna. I am thirtysomething and I live in Staten Island, NY. Imagine you were told you had an incurable and almost untreatable disease that nobody has ever heard of and can be fatal. It’s not where I thought I would be at this age. I have always had health issues from day one. Nothing MAJOR but issues nonetheless. There is an underlying issue but no doctor seems to know what or seems too interested in finding out what it is. We know some pieces to the puzzle but not everything and it will probably take an autopsy to figure out what the heck is wrong with this broken body as not too many doctors are willing to take on complex patients.
Growing up nothing seemed connected and eventually I was told it was “just anxiety” or in my head and written off. I went to so many doctors asking for help. I was in a cardiologists office at 14 for tachycardia, a GIs office by 16 for stomach pain, nausea and bloating, I was constantly getting upper respiratory infections and pneumonia, my joints (specifically my hands and knees) always hurt and made weird noises, I was always spraining something or in some type of discomfort. The doctors all looked at me and shrugged and told me it was in my head. I trusted the doctors and just figured my “anxiety” was getting the best of me and I pushed on. I didn’t have much of a choice. I began having self-esteem issues at a young age. I always felt not good enough. I wasn’t smart enough, tall enough, pretty enough, etc. Those thoughts grew and evolved. I felt so out of control. Combine those feelings with being told I’m already “crazy” for years and cue anorexia to the mix. It started off as thoughts and little behaviors. I was able to hide it for a long time. I was never heavy. If anything I was always thin and borderline underweight and had trouble gaining weight. It didn’t become physically noticeable until my early 20’s and others began to show concern and ask questions. I admitted I had a problem and in 2007 I went to treatment. There I gained the tools I needed to recover. Recovery is not an overnight process nor is it linear. It took me almost 7 years to fully recover. There were moments of progress and moments of relapse, all which are part of the recovery process. 2014 was the year I took my life back from unhealthy thinking and could be classified as “recovered” but unfortunately not soon after my health got worse and worse. My mind was finally healing and my body was doing the opposite. I was on a bunch of new medications for migraines, I had begun to (try) and eat a balanced healthy diet, and I quit smoking cigarettes. I’m not sure exactly what triggered my already broken body to go into kill mode but I have a feeling it was a combination of the medication I was taking and years of not taking care of myself. Kind of like my body saying “now you want to be healthy and want me to work? Go f@!% yourself!”
I’ve struggled with migraines for years but in 2015 I started getting them more often and more intensely with some pretty scary symptoms. I was diagnosed with chronic migraine disease and multiple types of migraines. I was put on a combination of medications that included a steroid and hello weight gain! It was welcomed and it was amazing! I looked fantastic and I felt confident. The meds didn’t work and I was taken off of them. I started to lose the weight I put on and my stomach issues (pain, nausea, vomiting, fullness, etc) got worse. I blamed the migraines until it became apparent it was more than the migraines.
I was hoping the GI hell was temporary but in December of 2015 I began to just get worse. I was in and out of the hospital for dehydration and electrolyte abnormalities and after ringing in the New Year in critical care I made an appointment with a GI. My electrolytes were so thrown off from dehydration (constant vomiting of anything including water) and malnutrition that my body was shutting down. My potassium level was so low it started to affect my heart. Having AED pads slapped on my chest was a bit of a wakeup. I waited what seemed like forever for an appt with a GI. Over the course of almost a year it was him sending me for a bunch of tests and then basically shrugging me off and saying he wasn’t sure what was wrong with me. I asked him if it could be gastroparesis and would he be able to order a gastric emptying test since I’ve had every other test done. He told me I’m not diabetic so there is absolutely no way I could have gastroparesis and wrote me a script for a test of my gallbladder. In those few months my weight kept dropping and I was in and out of the ER more and more but nobody was doing anything! I remember asking one doctor for advice and help since I was getting desperate and I was told that they would see what they could do and then decided to throw in their opinion stating that I had done this to myself. I did not hear from that doctor again. By May of 2016 my health was deteriorating fast and I was looking for a new GI. If I didn’t find a second opinion I wouldn’t be here. I heard things no patient should ever have to hear. Little did I know this was only the beginning of a long repetitive and set of phrases that I am STILL hearing from medical professionals to this very day; “It can’t be as bad as you say”, “This test is normal, maybe seek therapy”, “I don’t know what to tell you, maybe try a larger hospital.”, “You’re too complex, we can’t help you”, “You have exhausted all treatment options.”, “We can just make you comfortable and treat the symptoms.”
I also began seeing a rheumatologist where I was diagnosed with undifferentiated connective tissue disease and started medication. She said there is something autoimmune going on in my body but no tests showed anything concrete. At my first appointment with my new GI he listened to my symptoms and said he believed it was gastroparesis and sent me for a gastric emptying scan. I had trouble with the first attempt of the GES so it wasn’t until July that I was able to successfully get an appointment and complete the test and was diagnosed with moderate/severe gastroparesis. That GI and my primary care doctor both recommended a nutritionist and a motility specialist. My BMI had hit 15 at this point. It hurt to walk, it hurt to breathe, it hurt to exist but I pushed on. I started working with the nutritionist while I waited for an appointment with a motility specialist.
I saw the motility “specialist” in September and it did not go well at all. He was not the doctor for me and he was quite far away. For a motility “specialist” he was an arrogant and demeaning person. He shrugged off my test results and wanted me to start from square one. I didn’t have time to start over. I was dying and he was telling me I just needed willpower to drink blenderized food. By October things were getting worse and started to get serious and scary. Scary as in my husband would check on me in the middle of the night scary. I had a small intervention type conversation at work because they thought I was going to literally just fall over. A PICC line was placed and TPN (total parenteral nutrition) was started while I waited for an opening with a surgeon for a feeding tube placement. TPN is IV nutrition that infuses through a central line. It bypasses the entire digestive tract. After a j tube was placed (it bypasses the stomach and pumps nutrients into the small intestine) I was slowly weaned off of TPN but the PICC was left in for fluids and medication.
Things were going well for over a year and the tube needed to be changed. It was never the same after and caused a lot of pain and leakage. There was a four to five-month period between tube changes that almost killed me twice. I aspirated during one of the tube changes. I was sent home and only hours later I was rushed to the hospital with the beginning stages of sepsis and pneumonia in both lungs. My weight also got very low again since the tube was unusable. When they went to replace that tube, I aspirated again during the procedure and woke up to my husband telling me I was admitted and to just stay calm. Thankfully that tube worked well enough where I was out of the danger zone.
I started seeing a motility specialist in Manhattan in January of 2018 and had more testing done such as the smart pill which confirmed severe gastroparesis and a severe delay in my large intestine. In May of 2018 my other condition began to “flare” and the rheumatologist put me back on prednisone and repeated lab work. By July I was starting Sulfasalazine and diagnosed with Rheumatoid Arthritis. Between the immunosuppressants and the fact that my tube had been in 2 years and was not the proper tube for my body or lifestyle, the pain and leakage got worse and I wasn’t able to use the tube or take in adequate oral nutrition. I eventually developed cellulitis and in the beginning of December 2018 the tube was removed, I stopped the Sulfasalazine, began Methotrexate, and restarted TPN.
The GI surgeon who had placed my feeding tube and was the only person on Staten Island qualified to place a J Tube told me he would not be placing another tube. He told me the GPOEM procedure will “cure me” and the only thing he would offer is to trial the Botox while he was taking the broken tube out. While I was already out for the procedure the doctor injected Botox into my pyloric sphincter to relax it. It is supposed to be a type of trial to permanent procedure called the GPOEM procedure where the pyloric sphincter is cut open permanently to help food pass from the stomach to intestine easier. After a month I still felt no relief from the Botox and my motility specialist suggested we try it again and this time dilate the pyloric sphincter with a balloon and Botox to really stretch it. Again, no help, if anything some symptoms were worse. At my follow up he said the GPOEM may not be an option and he wanted another J Tube placed in hopes that I can come off the TPN and keep my small intestines from slowing down anymore. While my new surgeon was placing my new J tube, he noted an ulcer in the pre pyloric region. This means that when the balloon dilated to open it caused acid and bile to reflux back up into my stomach causing ulcers which could lead to GI bleeds. This means the GPOEM procedure would probably do the same or worse.
The combination of TPN and methotrexate was starting to affect my liver and my doctor, and I decided to stop the Methotrexate. I cannot move forward with any treatment for rheumatoid arthritis while I have the PICC line as the risk of sepsis is too high. I’m gambling with my life every day that this PICC line is in but removing it would be just as much a risk. As of today, I am still on TPN 3 days a week and totally reliant on the feeding tube. I can eat approximately one or two small meals every few days and even that comes with consequences. My husband and I lives consist of endless and often hopeless doctor appointments, surgeries, procedures, and hospital stays. We try to take everything one day at a time and we try to stay as positive as possible. We have laughed through some situations that would leave some traumatized. He is really sticking to those vows and I couldn’t be more thankful for him. He is my everything and my best friend. We try to live as “normally” as possible despite the abnormal situation.
Unfortunately, throughout all of this mess I had to reduce my hours at work and am currently just working part time. I was told my options for treatment beyond what we are already doing is few and far between. I am trying to come off the TPN as it is usually used as a last resort measure. I am fighting multiple battles every day; I battle my body and multiple chronic and incurable illnesses , I battle doctors and insurance companies, I battle a society that has not heard of the disease that is killing me and affecting millions of others, I battle politicians and big pharmaceutical companies who have the power to help us but aren’t, and I battle people who are ignorant and abandon when shit hits the fan. I have begged my husband on multiple occasions to just leave now, go find someone healthy that can do the things in life people our age should be doing like starting families. There have been times where I felt like giving up because the lack of help. I even went as far to draw up legal documents. When I first started to get sick I lost a lot of people I thought I was close to. I figured if these people reacted this way, what are internet friends and long-distance family going to think? I deleted Facebook and kept most of this to myself until now.
It’s time for me to speak up. It’s time I joined the fight to spread awareness and advocacy for this disease and other chronic illnesses. Although I have lost a lot of people I have gained some truly amazing friends and family who support me and fight beside me. It’s unfortunate that it is a disease that bonds us but I’m not the one to judge the reasoning behind life. My story is long, but it is not over yet. I need to be heard for myself, for the people fighting, and for the people who have lost their battles. I will be heard. We will be heard. We need a cure <3