Volvulus

#EhlersDanlosSyndrome

I almost died giving birth to my son and it saved my life. The triggers of PTSD (PostTraumaticStressDisorder) are live changing. I’ve been told that my responses to triggers are ‘just anxiety‘ or ‘hypochondria.’ However, when you’ve had multiple life-threatening conditions ignored by medical professionals and friends/family alike you become conditioned to the flight or fight response that is so deeply rooted in the aftermath of traumatic life experiences. I had several odd health experiences that seemingly started in high school after my recovery from mononucleosis. I experienced overwhelming fatigue, widespread body pain, neurological symptoms like dizziness and faintness, and heart palpitations. I mostly learned to live with these symptoms after multiple trips to urgent care, my primary care physician and even the emergency room turned up with no answers. I settled on the idea that nothing could be done, despite my gut knowing that something wasn’t right. In my mid-twenties a CBC turned up low globulin levels in my blood that sent me into a whirlwind of testing- the result, idiopathic hypogammaglobulinemia– an immune deficiency of unknown origin. At the same time, I was having gastrointestinal issues, vomiting after meals, early satiety and was diagnosed with gastroparesis after a gastric emptying study. I was told that these conditions were unrelated. So, I went about my life adding two more layers of complexity to my medical mystery. Entering my early thirties, I decided that I would like to try for a child. With my diagnoses and my suspicion of other underlying health issues, I went to see all of my related specialists, PCP, Immunologist, Rheumatologist, Gastroenterologist to consult whether it would be safe for me to have a child- the overwhelming response was YES! I became pregnant and I felt better than I’d ever felt, until 33 weeks gestation- I began swelling with pitted edema and my blood pressure became erratic. I was told that home blood pressure cuffs ‘aren’t accurate’ and dismissed. After an especially high blood pressure reading I went to triage at the local hospital where I was scheduled to give birth. My blood pressure read high and I had protein in my urine, but I was sent home with little to no concern or recommended plans for follow-up. Right quadrant abdominal pain woke me up in the middle of the night the next day and I called the on-call OB GYN to report what I was feeling, she told me ‘Oh, it’s about to rain tomorrow, you pregnant women are like little walking barometers, it’s nothing to worry about- today isn’t your time.’ I trusted the advice, I made a pact to myself that I would wholly trust the medical professionals and my body through the process and so I did. Within the next 12 hours I was in the hospital, this time with debilitating right quadrant pain and now my blood pressure was highly elevated, the platelets were low and elevated liver enzymes- I had full blown HELLP syndrome, a rare and potentially life-threatening pregnancy complication. I was induced and told best practice for this situation was a vaginal delivery. My condition worsened and after 24 hours of labor and significant decline in my condition, my son was delivered by c-section at 35 weeks to the day. He was a small 4lbs 14oz but I was told that he was otherwise healthy- phew- I did my job- and I was whisked away to the ICU. When I finally regained consciousness, they brought me my son, he was perfect. I help him with the help of family and medical staff and I feel completely in love and I knew immediately I would do anything for my child. We started feeding my son and he vomited blood and almost immediately green bile. The nurse told me that the vomiting was ‘just birthing fluids.’ This time, I didn’t trust the medical staff, I didn’t buy this story so I insisted he be returned to the nursery for examination. The medical director returned a few hours later reporting that my son was not well and that his condition was declining rapidly, they were unsure what was wrong. I urged them to get prompt care at the highest level and to transfer him to another facility if that was necessary. He was transferred and went through 3-days of back-to back surgeries, he had suffered a volvulus as a result of intestinal malrotation- he lost 85% of his small intestine and was left with the diagnosis of short bowel syndrome and given an ostomy, g-tube, broviac catheter and total parenteral nutrition. We weren’t made any promises. We stayed 3.5 months in the NICU until our experience there proved that we needed a more specialized team- we transferred our son to a hospital that specialized in this population. We rehabilitated his bowels for almost 7.5 months before we were discharged home with a tube and total parenteral nutrition. I became my son’s nurse (as we were not offered any medical care), mother and fierce advocate. I made it my mission to give my son the best possible outcome despite his diagnosis and established excellent therapists, fine tuned his medical management, read journal articles and networked with others in the nutritional support community to learn best practices. During this time, my health took a downturn, I began dramatically losing weight, passing out, vomiting regularly and became weak and feeble – all while putting everything I had into my son’s wellbeing. Throughout my advocacy- I encountered individuals with many different diagnoses that resulted in situations similar to my son’s (ostomy, broviac, TPN, G-tubes) and a light-bulb went off. WAIT – I recognized many of their symptoms beyond my son’s – these were MY symptoms. My son’s rare and complex condition led to the resolution of my years of mystery ailments. I learned about connective tissue disease (EDS, Lupus, Sjogrens) and how these disorders could lead to my symptoms and pregnancy complications. I also learned that autoimmune disorders can be the result of immune deficiency (my hypogammaglobulinemia was something to be concerned about after-all), My widespread itching and hives were a product of mast cell reaction disorder and the list goes on. I consulted a geneticist and FINALLY got answers to so many unanswered questions that I’d archived over the years and the treatment my body desperately needed. My son is now off of TPN and his SBS is stable, I’m not cured, my conditions are chronic but my care is being managed- neither my son nor I are ‘cured,’ but together, we made it- I saved him and he saved me. Now we navigate a life together of RareDisease management and I continue to invest my time in advocacy for the chronic and RareDisease community. I am grateful for where my son and I are today in our health journeys, although far from perfect. The most unfortunate piece of all of this jigsaw puzzle is the misguided paths and resulting misfortune of significant delays in diagnosis and care- is that in addition to all of the diseases and disorders that my son and I are up against, I have added PTSD (PostTraumaticStressDisorder) to the top of my list- the figurative here on top of all of this. So, today I manage active ChronicIllness and try my best to cope with the misfortunes of my past. Regardless of how positive I am in my life, the relentless wake of PTSD settles upon me and asks me to relive my responses to some of my life’s most difficult and heart-wrenching moments. June is PTSD awareness month, my hope is that more research, counseling and support are available through the transparency of this disorder.

#PTSD #ChronicIllness #RareDisease #PostTraumaticStressDisorder

As a kid I was abused by my mother, I thought it was the worst thing that could happen, but it wasn’t..

We moved when I was 13, and everyone at school almost disliked me for being short,

I used to be so lonely I’d listen to a radio in the breaks, and avoid everyone, because they’d just tease me.

I’d draw and escape into books, and my mom was abusive and telling me I was never good enough, pretty enough, tall enough or popular enough, and I was a burden to her.

For a year since I was 12, I threw up after dinner, my mom didn’t do anything until a year passed, and I thought it was a part of growing up, but when my dad expected a eating disorder they moved fast, but it wasn’t the problem, it was a lot of days at the hospital and tests and I got crohns disease after they first suspected other things, not just crohns disease, but it was so serious a doctor once told me I’ll always be ill, and if Im better, I just have to wait for the medicine to stop working and get ill again.. Thanks I guess..?

You’d think my parents would support me more then right? Hahaha, no..

I could NEVER complain, if I did I was lazy or tried to sneak out of duties, I was lying or just acting out they thought, and I was forced to go to school and raise my brother, I had to get him to kindergarten and back and wake up a hour earlier and pick him up after, while being really ill, and my mom blamed me for having to come with me to the hospital, I remember being envious on the kids with caring and sweet parents, my mom had full custody and always followed me till I was 18, but she mostly just left me at the hospital during medicine claiming she was buying me some food and was gone for hours.

At 17 they wanted to do a surgery and remove some of my colon, because I was in a good period, I woke up after the first surgery and felt ok, everything was ok and I could go home very soon, once we prepared to go home, I got ill, so ill i can’t even remember anything from it, but I was told I was rushed into surgery and they found out my colon wasn’t connected, it had swollen up, it could have killed me, and my dad was terrified, my mom was cold and calm ofcourse.. And the surgery went fine but I woke up with a stoma, I had no idea what it was, or what I’d do with it, and it was all terrifying.. I’m not sure if it was after the first or second surgery, but I had a epidural and was fresh out of surgery, and all night I laid there in pain because the epidural fell out.. They didn’t notice that ofcourse because the medicine was going in..It was the worst thing ever, and to this day hospitals give me uncontrollable panic attacks.. After that they sent me to a surveillance place where I got alot of pain killers, it felt like being in heaven is all I remember. I think I was in the hospital for 3 weeks to heal, but im not sure, it’s 10 years or so ago, but it still makes me horrified of hospitals and needles..

2 months after that I had a #Volvulus, the skin grew into the colon and blocked it, I was sent about 1 hour in a ambulance because I visited my granny and later got surgery again, and removed the stoma, and I was so relieved, as it was hell for me..

Now I’ve tried all the medicines they have and have nothing to fall back on, it’s terrifying, but I found something to work luckily, so I have to hope more alternatives will come, and I’m happy for every good day, but its still hard, and my family rarely supports me or seem to care, they only visit if I’m at the hospital, and then they often act like I’ll die, or freaks out, or they just don’t seem to care and offers to visit more because they have to, depending on who it is, only 3 in my family visits though, my mom, dad and granny, no one else, I don’t blame my siblings, they’re alot younger than me, and I don’t want them to see me sick, but it’s sad that my other family doesn’t seem to care at all, I don’t think they even know how sick i am, as if it’s a secret..

But I don’t want to tell them that, it’s not my place to do when Ive been sick for half my life..

To this day, my family doesn’t really belive my mom abused me either, sometimes I even doubt myself, because I’m told I’m lying or making things up.. And she treats my brother so much better, and hugs him and tells him she loves him, why didn’t I get that? My family failed me, and they’ve never even apologized or tried to understand.. I don’t need a apology from my mom, she’s to sick to realize it..

I always feel strong until I realize how little support I have, it’s been so bad the best support i have is myself, and it probably saved me, because I never let myself give up, and I always cheer myself on. Videogames, books and hobbies are my savior, and I am so happy that I can be home and do what I love all day, and even if people don’t get it, i’m happy!

I’ve been through hell and know I can take it, but I’ll cherish all the good times and always fight on, because it always gets better, don’t ever give up!

Thank you so much for reading my story❣️

XOXO Cookie Lexie

#CrohnsDisease

As a kid I was abused by my mother, I thought it was the worst thing that could happen, but it wasn't..
We moved when I was 13, and everyone at school almost disliked me for being short,
I used to be so lonely I'd listen to a radio in the breaks, and avoid everyone, because they'd just tease me.
I'd draw and escape into books, and my mom was abusive and telling me I was never good enough, pretty enough, tall enough or popular enough, and I was a burden to her.
For a year since I was 12, I threw up after dinner, my mom didn't do anything until a year passed, and I thought it was a part of growing up, but when my dad expected a eating disorder they moved fast, but it wasn't the problem, it was a lot of days at the hospital and tests and I got crohns disease after they first suspected other things, not just crohns disease, but it was so serious a doctor once told me I'll always be ill, and if Im better, I just have to wait for the medicine to stop working and get ill again.. Thanks?

You'd think my parents would support me more then right? Hahaha, no..
I could NEVER complain, if I did I was lazy or tried to sneak out of duties, I was lying or just acting out they thought, and I was forced to go to school and raise my brother, I had to get him to kindergarten and back and wake up a hour earlier and pick him up after, while being really ill, and my mom blamed me for having to come with me to the hospital, I remember being envious on the kids with caring and sweet parents, my mom had full custody..

At 17 they wanted to do a surgery and remove some of my colon, because I was in a good period, I woke up after the first surgery and felt ok, everything was ok and I could go home very soon, once we prepared to go home, I got ill, so ill i can't even remember anything from it, but I was told I was rushed into surgery and they found out my colon wasn't connected, it had swollen up, it could have killed me, and my dad was terrified, my mom was cold and calm ofcourse.. And the surgery went fine but I woke up with a stoma, I had no idea what it was, or what I'd do with it, and it was all terrifying.. I'm not sure if it was after the first or second surgery, but I had a epidural and was fresh out of surgery, and all night I laid there in pain because the epidural fell out.. They didn't notice that ofcourse because the medicine was going in.. It was the worst thing ever, and to this day hospitals give me uncontrollable panic attacks..

2 months after that I had a volvulus, the skin grew into the colon and blocked it, I was sent about 1 hour in a ambulance because I visited my granny and later got surgery again, and removed the stoma, and I was so relieved, as it was hell for me..

Now I've tried all the medicines they have and have nothing to fall back on, it's terrifying, but I found something to work luckily, so I have to hope more alternatives will come, and I'm happy for every good day, but its still hard, and my family rarely supports me or seem to care