my [very wordy] story - thanks for reading
hey all… my name is nik ki and i’m 28 years old. I’ve had digestive issues as long as I can remember, my family always said I had a “sensitive stomach”. Reflux and lactose intolerance as a baby, although soy formula/milk didn’t really sit well with me either, so maybe it was more than that. I remember some nights during elementary school sleeping on the floor of the bathroom in a sleeping bag so I could be as close as possible to the toilet. So I’ve pretty much gotten used to not having “normal” digestive health, thinking it's just a part of me. I'd gotten so used to it, in fact, that when my pain really started about 6-8 months ago, I figured it had to be something other than intestinal stuff.
First doctors and family thought pneumonia, lupus or RA, then lyme disease, valley fever, kidney issues, mitral valve prolapse (had an ECG) then they thought thyroid issues (had an ultrasound), and I got 4 CT scans – head, abdomen, pelvis, and chest. I’ve had tests for all of the listed in the past 6 months, along with numerous blood panels. I have a positive rheumatoid factor but negative ANA (they’ve only done these tests once). So they told me I had fibromyalgia, put me on some antidepressants and that was it. This whole time I’ve felt so alone because I hated trying to convince everyone that this illness/pain is REAL. I am normally really tough, have a HIGH pain threshold, so it really sucked that for once when I was trying to get to doctors to get help, I was brushed aside.
I’ve had three bladder infections in the past few months, one turned out to be a kidney infection, and I passed some kidney stones . I thought maybe that was the answer, since I was having side/flank/upper and lower abdominal pain, but my pain stayed around even after. I never equated it to digestive stuff really, because I’ve always had diarrhea or constipation more often than normal bowel movements. I’m not sure how I didn’t realize – I guess there was so much crap going on inside my body I wasn’t sure how all of the symptoms linked together.
Some days I couldn’t even get out of bed, my whole body ached, including stiff joints and sore muscles. I finally understood what people had meant when they said they feel like they had been hit by a train. I have had low grade fevers for a majority of the time, rashes, and weird sores, even swollen or blood shot eyes. At one point I even thought maybe my sores were from bugs in the house, or a mite infestation, but my husband and pets never had any issues, not even one “bug bite” so it made no sense for that to be it.
It’s been a long road, I have lost faith in numerous doctors, many of which have told me that it might be stress, or psychosomatic, and gave me prescriptions for Xanax and Ativan (which I never filled). They made excuses for my high blood pressure and fevers (traffic can make your blood pressure high! And it’s hot outside so of course you have a fever!). I felt like I was blown off, like my history of anxiety and depression put a huge cloud in front of my actual physical pain, and they just figured I was a fragile soul or a wuss. It was really difficult to feel like I was not being taken seriously…exhausting, really. I was in so much pain, and had so much fatigue, I almost gave up advocating for myself. Like, screw it, I guess this is a life sentence and it will always be a mystery illness, I’m done.
I don’t know how many times I had to say to family, friends, and even doctors “there is more wrong with me than just anxiety. This is not just stress, it is something physical”. I have experienced physiological symptoms from anxiety before, and the pain/fatigue I have had has been NOTHING like it. On my worst days, I almost feel like I can’t leave the bed I feel so awful, I walk stiff and slow, and don’t want to eat because I know I’ll just have horrible diarrhea or vomit it all back up anyway. Things have stabilized a little since the worst of it. I finally went to a GI specialist who scheduled a colonoscopy and an EGD for a couple days after our consultation appointment (which was at the beginning of this month). He found erosive esophagitis (from GERD), gastritis, hiatal hernia and an ulcer, inflammation in the terminal ileum and colon, which they called “congested, erythematous, and granular mucosa”, and erosion of the hepatic & splenic flexures. Also hemorrhoids, which is always fun. Biopsies came back as “eosinophilia”. Put me on Lialda (mesalamine) and Zegerid.
My doctor recommended a rheumatologist for my joint pain (and I’m hoping more autoimmune type blood tests), and I want to go because I’m 85% convinced it’s probably Crohn’s, even though the GI just called it moderate IBD. I go back to the GI doctor in 6 weeks to reevaluate how I’m doing. Side note: I was on Accutane 10 years ago, so not sure if this is related at all… you all might have seen the law suits or lawyer television ads regarding this.
I'm feeling kind of alone since my husband and family don't really know what I'm going through (or what I have been through to get here), at least emotionally. Not sure they understand how physically awful I have really felt, either. I also feel like a loser because I am now unemployed (had to quit my job) and had to drop out of school too. And I feel like I'm too old to not be doing anything with my life, although I guess being sick has become my life. Depressing. :redface:
hey all… my name is nik ki and i’m 28 years old. I’ve had digestive issues as long as I can remember, my family always said I had a “sensitive stomach”. Reflux and lactose intolerance as a baby, although soy formula/milk didn’t really sit well with me either, so maybe it was more than that. I remember some nights during elementary school sleeping on the floor of the bathroom in a sleeping bag so I could be as close as possible to the toilet. So I’ve pretty much gotten used to not having “normal” digestive health, thinking it's just a part of me. I'd gotten so used to it, in fact, that when my pain really started about 6-8 months ago, I figured it had to be something other than intestinal stuff.
First doctors and family thought pneumonia, lupus or RA, then lyme disease, valley fever, kidney issues, mitral valve prolapse (had an ECG) then they thought thyroid issues (had an ultrasound), and I got 4 CT scans – head, abdomen, pelvis, and chest. I’ve had tests for all of the listed in the past 6 months, along with numerous blood panels. I have a positive rheumatoid factor but negative ANA (they’ve only done these tests once). So they told me I had fibromyalgia, put me on some antidepressants and that was it. This whole time I’ve felt so alone because I hated trying to convince everyone that this illness/pain is REAL. I am normally really tough, have a HIGH pain threshold, so it really sucked that for once when I was trying to get to doctors to get help, I was brushed aside.
I’ve had three bladder infections in the past few months, one turned out to be a kidney infection, and I passed some kidney stones . I thought maybe that was the answer, since I was having side/flank/upper and lower abdominal pain, but my pain stayed around even after. I never equated it to digestive stuff really, because I’ve always had diarrhea or constipation more often than normal bowel movements. I’m not sure how I didn’t realize – I guess there was so much crap going on inside my body I wasn’t sure how all of the symptoms linked together.
Some days I couldn’t even get out of bed, my whole body ached, including stiff joints and sore muscles. I finally understood what people had meant when they said they feel like they had been hit by a train. I have had low grade fevers for a majority of the time, rashes, and weird sores, even swollen or blood shot eyes. At one point I even thought maybe my sores were from bugs in the house, or a mite infestation, but my husband and pets never had any issues, not even one “bug bite” so it made no sense for that to be it.
It’s been a long road, I have lost faith in numerous doctors, many of which have told me that it might be stress, or psychosomatic, and gave me prescriptions for Xanax and Ativan (which I never filled). They made excuses for my high blood pressure and fevers (traffic can make your blood pressure high! And it’s hot outside so of course you have a fever!). I felt like I was blown off, like my history of anxiety and depression put a huge cloud in front of my actual physical pain, and they just figured I was a fragile soul or a wuss. It was really difficult to feel like I was not being taken seriously…exhausting, really. I was in so much pain, and had so much fatigue, I almost gave up advocating for myself. Like, screw it, I guess this is a life sentence and it will always be a mystery illness, I’m done.
I don’t know how many times I had to say to family, friends, and even doctors “there is more wrong with me than just anxiety. This is not just stress, it is something physical”. I have experienced physiological symptoms from anxiety before, and the pain/fatigue I have had has been NOTHING like it. On my worst days, I almost feel like I can’t leave the bed I feel so awful, I walk stiff and slow, and don’t want to eat because I know I’ll just have horrible diarrhea or vomit it all back up anyway. Things have stabilized a little since the worst of it. I finally went to a GI specialist who scheduled a colonoscopy and an EGD for a couple days after our consultation appointment (which was at the beginning of this month). He found erosive esophagitis (from GERD), gastritis, hiatal hernia and an ulcer, inflammation in the terminal ileum and colon, which they called “congested, erythematous, and granular mucosa”, and erosion of the hepatic & splenic flexures. Also hemorrhoids, which is always fun. Biopsies came back as “eosinophilia”. Put me on Lialda (mesalamine) and Zegerid.
My doctor recommended a rheumatologist for my joint pain (and I’m hoping more autoimmune type blood tests), and I want to go because I’m 85% convinced it’s probably Crohn’s, even though the GI just called it moderate IBD. I go back to the GI doctor in 6 weeks to reevaluate how I’m doing. Side note: I was on Accutane 10 years ago, so not sure if this is related at all… you all might have seen the law suits or lawyer television ads regarding this.
I'm feeling kind of alone since my husband and family don't really know what I'm going through (or what I have been through to get here), at least emotionally. Not sure they understand how physically awful I have really felt, either. I also feel like a loser because I am now unemployed (had to quit my job) and had to drop out of school too. And I feel like I'm too old to not be doing anything with my life, although I guess being sick has become my life. Depressing. :redface:
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