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OP
I do not have any tips for psoriasis but I wanted to say I feel for you. Shits not fun. Hopefully someone else who has it will bring some tips in
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Autoimmune disease Era
- Thread starter Fiction
- Start date
My wife got diagnosed for rheumatoid arthritis a few months ago and she has Sjogren Syndrome as well.
She got diagnosed super early but her test results were off the charts and she's been hit with massive pain to every part of her body at some point. Been a tough few months to say the least. She was talking about assisted suicide down the road at one point :(
Finally got to see a rheumatologist after months of waiting and got put on Hydroxychloroquine and the waiting begins.
They say it's real early and they can put it into remission so I hope they're right. Only prednisone and fasting gave any real short term relief.
She got diagnosed super early but her test results were off the charts and she's been hit with massive pain to every part of her body at some point. Been a tough few months to say the least. She was talking about assisted suicide down the road at one point :(
Finally got to see a rheumatologist after months of waiting and got put on Hydroxychloroquine and the waiting begins.
They say it's real early and they can put it into remission so I hope they're right. Only prednisone and fasting gave any real short term relief.
I didn't know this thread existed. This will be fun to share. It's loooooong.
I was diagnosed with inflammatory bowel disease when I was 16. One Fall, we were dropping my brother off at Georgetown for the school year, and on the way home, I had the absolute worst, constant gas. No abdominal pain or anything, but an overwhelming amount of gas that smelled really awful, a sick smell, for the entire four-hour ride home. When we were in Georgetown, I felt a little under the weather and I didn't have much of an appetite. I had always been really thin. Like, 105 lbs. at 5'10".
Things took a sinister turn when we got home. When I went to the bathroom, blood just poured out of me. I had issues with anal fistulas when I was like two years old, and they're a symptom of Crohn's Disease, one of the forms of IBD, but beyond that, and being underweight, I didn't exhibit any obvious symptoms. But after that day, my life wouldn't be the same. I started my junior year of high school that same year, but the bleeding didn't stop. My parents were averse to putting me through diagnostic tests like colonoscopies at the time, and I had a severe phobia about needles, so we started trying to deal with it by going to my pediatrician. She was woefully ill-equipped to handle it, and honestly came across like she thought my mother was exaggerating my symptoms, and just suggested that I add more roughage to my diet, which is actually one of the precise things you do not want to do. At this point, my memory starts to get bad. I know I continued at school for a couple months. One day I woke up before school and noticed a very fine, light rash, but I went anyway. When my mom picked me up afterwards, it was everywhere, and deeply red. She couldn't believe no one at school mentioned anything to me about it, or called her, or tried to send me home. But they didn't. I think that was the last time I went to school for nearly a year. My mom had our neighbor, a wonderful man who was a dermatologist, come over to our house to look at me. He didn't say anything in front of me, but he told my mom that he thought I had cancer and that I needed to be hospitalized right away. I think, by this point, we had started seeing a pediatric gastroenterologist, but I don't remember. My mom recently looked through my records, and the Gastro actually noted that he thought I may have contracted Scarlet Fever. No one ever told us this. I started getting tests done, and I had to overcome my fear of needles really fast, because IVs weren't optional, at this point. After a colonoscopy, I was diagnosed with ulcerative colitis, a form of IBD that exclusively attacks to large intestine. It was so bad that the doctors were afraid I could suffer from something called toxic megacolon, where, if I correctly recall, your intestine is so damaged and broken that it essentially evaporates and your waste enters your body cavity.
So, in retrospect, it kind of amazes me that I was going through all of this, and no one asked to see a fucking stool sample. You'd think that would be important, right? But it never came up, to my knowledge. My parents and I would describe how much blood there was when I went to the bathroom, how much time I spent on the toilet trying to go something besides blood clots, but I was always under the impression that the doctors thought that we were just startled by the blood, or the disease, and we were overstating the severity, despite seeing my declining appearance, or looking at my actual intestine. Anyway, I was placed on a HUGE dose of prednisone and other auto-immune suppressants to try to get things under control, as well as iron supplements, because, unsurprisingly, I was incredibly anemic. It's worth noting, I was barely eating, so putting large amounts of steroids and iron into a stomach that was always empty was really unpleasant.
We tried this at home for a bit of time. I don't know how long. I remember thinking, things could have been worse. This was late Summer and early Fall or 98, so I got to stay in bed and play Klonoa, Metal Gear Solid, Xenogears, Tenchu, Ocarina of Time, and so many amazing other games during what I still contend was the best year for video games, without having to do anything else. Of course, I didn't get better, and I was getting so sick that I couldn't even focus on, let alone enjoy, reading or writing or playing games. I dropped to 79 pounds. I wasn't eating. I was so thin, I was essentially a skeleton covered with skin. It hurt to stand. It hurt to sit. I had no meat on my bones, there was nothing to pad my body. Throughout all of this, and this is something I'll come back to again and again, I never thought I could die. It wasn't even a consideration, and I don't know if my ignorance is really what allowed me to keep powering through. I just thought, this sucks, but something will change and I'll get better.
I was hospitalized, the first of dozens of times in my life, although I think it was my longest stint, or second longest. It was not a good experience. It's never fun being in a hospital, but depending on the nursing staff and your physical ability, you can take walks and talk to people and you can try not to lose your mind. I was really, really sick. They tried to do things to get me to show any signs of joy or happiness. They brought a TV in my room, and my parents brought my Saturn and PlayStation and hooked it up, hoping having my beloved video games in my hospital room would improve my mental state. I didn't think I was going to die, but I wasn't happy. We were getting into winter at this point, but the idiotic nurses told my parents I was depressed and needed to go outside the urban hospital and walk around the block to get in better spirits. 79 pounds, I was. And it hurt to just lay in bed. Standing to get into the bathroom, which I had to do frequently, was a battle. I remember one time, I was so fed up and tired that I just shit in my bed. My mom let me have it for doing that, and so I never considered doing it again. I had a tube through my nose into my stomach at this point; and they were pumping me with Ensure because of the high calorie count, to try to put weight on me. But high sugar content + empty stomach + diseased, hemorrhaging digestive tract do not mix. I would throw up, or suffer through excruciating pain. Or both. Generally just both.
It went on like this for a couple months. I switched gastros a couple times, but my case was so serious that I eventually ended up with a team of specialist doctors. You're probably thinking that I had the absolute worst doctors in history, or terrible medical care, or idiotic parents, but I didn't. The doctors are considered some of the best in their fields to this day, and my parents spared no expense in taking me to the best treatment facilities and did everything to help me and abide by my wishes, and to try to prevent my life from just derailing irreparably. I don't have any issues with how this went down. I will, eventually, have issues with my family and my doctors, but it wasn't because of anything that happened to this point. My case was abnormally severe. There were so, so many things that happened to me, where doctors would explain side effects or potential risks from medicines or surgeries, but then say, "but this only happens to like a fraction of the fraction of the people that do this," and I always fell into that small percentage. Always. Stuff they never dreamed could happen to a patient, it happened to me.
So, finally, luckily, at one point, one of my doctors came into my room when I was going to the bathroom and saw the contents of the toilet. He had what I can only describe as a panic attack. He came rushing out of the bathroom, essentially shouting that there was no hope for recovery through medications and I needed to go into surgery. I don't think I saw him again after that. We didn't rush right into surgery. I got a new team doctor lead, and the guy was brilliant. Great bedside manner, hugely intelligent. I still wanted to try to get better without surgery. But it didn't work.
So, because they thought I had colitis, I was a candidate for what I think was a relatively recent new surgery where they remove your entire large intestine and convert part of your small intestine into something resembling a colon. It's called an ileo-anal pouch. My large intestine was completely beyond repair, so I was totally fine with this, as I wouldn't end up with a bag. I did not want a bag. I was 16, and the thought of living my life with a plastic bag of shit hanging off my abdomen was unimaginable. Typically, the procedure would be two parts, one to resect the large intestine. They would construct the internal pouch from my small intestine, but divert a portion of the bowel to a temporary ileostomy while the small bowel pouch healed. Then, in six months or a year, they'd reconnect the resected bowel and reverse the ileostomy. However, the surgeon, for whatever reason, thought that they could pull it off with one surgery. This is where things start to turn, and my life is still affected because of it, to this day.
I think it was June of 99 by this point. I'm not sure. It was a while after I first got sick. I had the surgery on a Tuesday, and afterwards, everything seemed fine. I had a lot of pain and bloating, but after my body went through what it did, then having major abdominal surgery and removing a large organ, that seemed par for the course. I only remember little snippets here and there. I remember one of the old nurses stepping on my urinary catheter while I was sitting in a chair a day or two after surgery. I remember laying in bed, watching a Penguins hockey game while my dad sat at my bedside, reading Hannibal. And I remember going into shock. I was laying in bed on that Friday, and I started to shake. I've always been shaky, but this was different. It was so violent that the bed shook, and my entire family, my brothers and my parents, turned to look at me because it was so obvious. I remember my mom asking me if I was okay, and me answering, in a fog, that I was fine. Just cold. They ran to get a nurse. I had a fever of 107 F.
This part probably deserves its own little section. So, the surgeon that operated on me, he was part of this two-person surgical team at the hospital, and they were really highly regarded. But he was not the superstar surgeon. The other guy was. But the other guy was also a raging egomaniac and a misogynist. However, the day after my surgery, my surgeon left for Oklahoma City. We would later find out, although not much later, that he was leaving Pittsburgh and going to OKC to start his own surgical group there. It's also why he tried to do my stuff in one surgery, instead of two. He knew he wouldn't be there for the follow-up stuff, and he knew I didn't like the other guy. But when I went into shock, my surgeon was gone, so the technically better surgeon was who we dealt with. I remember he didn't want to do anything until after the weekend. He wanted to let things play out, and he thought I would be fine until Monday. My mother yelled at him. My mother saved my life. He told her to go shop for some groceries and go home and clean our house, get out of the hospital and do things she was supposed to do. My father, a real shitheel and actual criminal in his own right, thought this was hilarious. He laughed. But my mom didn't budge. Because of her, they put me on high doses of antibiotics over the weekend. I would have died without them.
My surgeon came back over the weekend, and when everyone was back on Monday, they ordered what's called a gastrografin enema. Essentially, they give you enemas with radioactive dye, then a radiologist takes pictures and they try to determine where problems are. I'm sure you can guess, but my pain was... it was bad. I'm crying on the train right now, just thinking about it. I could lay in the fetal position. That was it. But this test required me to straighten out my legs and roll over from side to side, and I couldn't do it. I just couldn't. But that didn't stop the radiologist. He manhandled me. Forcibly held my legs down, hit my legs and abdomen with the camera, threw me over from side to side. I know that I have not been the same since all of this happened, since I was subjected to the levels of pain I barely endured. Psychologically and emotionally I'm different, my personality is different. I'm aware of it. I know it broke me in some way. But I still never thought, at the time, that I was going to die. The radiologist lost his job. My mother saw to that. He already had complaints, apparently, on his record, but despite the fact that I was totally out of my mind at the time, I was still able to relay to my parents how he treated me.
Anyway, a catheter that they had put up my anus perforated the wall of the ileo-anal pouch that my surgeon built, my feces was leaking into my blood. I had sepsis. If not for the antibiotics, I would've been dead. My surgeon came to me, right after I got out of the room with the enema test, and told me that I had to go into surgery. Immediately. He then turned around and told my parents, who were standing probably five feet behind him, that I probably wouldn't make it. They said their goodbyes. But I didn't think dying was possible.
Somehow, I woke up. The proud owner of a temporary ileostomy. They fixed the hole, they said, but they were going to do it right this time. In three months, they would bring me back, reverse the ileostomy, and I would get better. I would be able to serve in the military, if that's what I wanted to do. I didn't, but I appreciated the encouragement. Those three months with the ileostomy, oh, man. The ileostomy products that companies offer to people, they're not good. Bags constantly leak or fall off, my skin was raw and bleeding from having stool constantly on my skin. I don't remember a lot of specific things about this time, but I know I was miserable and counting the days until my surgery, so that I wouldn't have to deal with it anymore. My family had money, so my mom tried to do what she could to raise my spirits. She bought me an import Dreamcast when it launched, and a bunch of the games, but I was too sick to play, so my friend would come over and play and I would lay in bed and watch. That's how I experienced most of the original Soul Calibur and Sonic Adventure. A shrink also started coming to my house, and I had in-home nurses.
I had the surgery. I never really got completely better. I had missed a year of school. In the Fall, I was homeschooled through the local school district for credits towards my private high school. I think in January or February, I went back to my regular school as a junior again. Only one of my old school friends treated me the same. He's still my friend, to this day. I don't talk to anyone else that I knew from high school. I still managed to finish in the top five of my class and get into a great college. But I was never right. My health still wasn't good. I still had pain, still had a small or nonexistent appetite, still had very little energy. Still didn't weigh a lot. I think I was around 110 to 115 pounds by this point. In spite of all of it, I managed to get a girlfriend and lose my virginity that summer! And the girl was cute, too! Huzzah! Of course, she was crazy and she would cause me headaches for nine years, but who thinks about consequences when you nearly died and you can get laid?
I went to school in the Fall, still didn't feel right. Had health issues through the year and a half that I was there, and I eventually transferred back home to a different school. In fact, I probably should not have gone to college right out of high school, given what happened to me and where I was mentally at the time, but my family insisted. I still had frequent appointments and diagnostics and all kinds of stuff done, but they never found anything, or so they said. Because I continued to complain about pain and fatigue, they started painting me like I was a headcase, like I was depressed, like I enjoyed being sick and the attention that came from it. My family, undoubtedly sick and tired of dealing with me by this point, also turned on me. My girlfriend was my problem. I was lazy. I had no direction. I liked being sick, I liked being in the hospital. Etc. Etc. Even my mom, my biggest advocate, lost her patience. In their defense, doctors kept saying they couldn't find anything wrong with me that would cause my severe symptoms. At one point during these years, I don't remember when, specifically, they switched my diagnosis to Crohn's Disease. Crohn's, unlike Colitis, can go anywhere in your digestive tract, from your mouth to your butthole. I was getting abscesses and fistulas, things I should not have gotten if I had Colitis, because the disease was apparently gone after taking the organ out. I had several surgeries over the next decade on smaller things, getting rubber bands through fistulas to help them drain, getting pill endoscopies removed from my small intestine after getting stuck. Twice during procedures, my heart stopped and I had to be resuscitated. I was going to college and working through all of this, as well as dating and other stuff, believe it or not. Although going to college or working wasn't exactly working well for me. I would start classes for a couple weeks, then I'd end up in the hospital and have to take Ws on my transcript to withdraw. I wasn't earning a ton of money, either, because they wouldn't be able to schedule me for months at a time. But I wasn't allowed to ease off. My family wouldn't allow it. My parents were divorced by this point, and they both threatened to stop supporting me if I didn't go to school. I relied on them for health insurance and housing, and my medical bills certainly weren't cheap.
So, right before New Years Eve 2010, I stopped going to the bathroom. Like, I couldn't go. I don't know if anyone has experience with a pouch like I had, but going to the bathroom is not a problem. Slowing your digestion down and lowering your output is the goal. Unfortunately, I stopped going because I had developed a blockage in my intestinal tract. I had to be rushed into surgery, so my bowels didn't burst. I still had the same gastro that guided me through my surgeries in high school, although the relationship wasn't great because he became dismissive of my complaints. But I had a new surgeon, and he was amazing. He's one of my heroes. Anyway, he told me mother after my surgery that he could still see remnants of my Thanksgiving dinner backed up in my digestive tract, that's how long the blockage was building up. But more importantly, he revealed something else that vindicated me. He had to take about 12 feet of my small intestine out after the blockage, and I once again woke up with an ileostomy. But the ileostomy was significant, not because my intestine had to heal from being chopped up and put back together, but because the hole in my intestine from when I was 17 never healed completely. That's right. The perforation that caused my sepsis and near death in high school was never totally fixed. It was a tiny pinhole, but it was there. My gastroenterologist had kept me on antibiotics and steroids for the 12 years since, and they masked the issue.
This is where things get (even more?) interesting. In 2004 or 2005, I don't remember exactly, I had an MRI with contrast dye, because I recently had an abscess and I was still experiencing discomfort, so they were checking to make sure everything cleared up. The radiologist noted on his write-up that it looked like there could be a pocket of bacteria behind my pouch, possibly due to a small leakage. My gastroenterologist never told me this, and apparently opted instead to read it as a shadow on the scan. The radiologist wasn't positive that it was a leak or a pocket of bacteria, it wasn't a certainty. But the gastro opted not to follow up on it at all. He just kept me on steroids and antibiotics. My surgeon, a colleague of the gastro, flatout said that the gastro was wrong and that they screwed up. I asked my gastro why he wouldn't even follow up with it, and he couldn't give me an answer. Just something fuzzy about not wanting to put me through anything invasive after everything else I'd gone through. I personally feel like he realized that they royally screwed up, and tried to cover for everyone involved. But I don't have any proof of that.
So, the ileostomy I had was hopefully temporary. My surgeon fixed the pouch that I had, but cautioned that it had suffered significant damage from being surrounded by infection for so long. However, he knew that I didn't want to live with a bag, and promised to do everything that he could to save it. He asked me to live with the bag for more than a year, at which point hopefully the pouch would have healed, and he would reverse it, if I wanted to try again. I went a year without being on medications for my auto-immune disorder, the first such prolonged period since I originally got sick in high school. I managed to finish school and get a decent, regular job. But I hated the ileostomy all the same, so after a year, my surgeon kept his word and reversed it. Almost immediately, within a couple months, we knew it was untenable. My body developed multiple fistulas and abscesses simultaneously. The pouch couldn't handle holding my feces. And that was that. I no longer had the luxury to mess around. Through the course of my ordeals, I had lost so much intestine that I am in danger of not having enough to absorb a livable amount of nutrients through eating and drinking. If I lost any after the diseased pouch was removed, I'd be eating through a tube in my arm for the rest of my life. So, back I went for one more surgery. The pouch was removed, I was given a permanent ileostomy, and my anus was completely sealed. I no longer have a butthole.
I wish I could say my issues ended there, but due to repeated abdominal surgeries, I now suffer from neuralgia and chronic pain. I'm no longer on any medications related to IBD. In fact, at no point have I ever tested positive for Crohn's, despite that being my diagnosis for almost 15 years now, since it was switched from Colitis. I had a surgery last year to remove scar tissue, sutures, and three hernias. I wanted to be a doctor or a Japanese teacher, but I was told that I wouldn't be able to do either. I lived in Japan for a few months, but had to come home because of health issues. That bridge was burned. Because of physical restrictions due to lack of a muscle wall in my abdomen and the danger of additional hernias and other complications, I wouldn't make it through medical or nursing school, where I'd be required to move and lift patients, and the odds of me tolerating just the general physical and mental stress are slim. I was told to just let it go.
I realize that this is long. This is my first time writing down even this much. I've talked about it here and there on Era and on GAF previously, but never to this extent. I don't even think my wife knows the full extent of everything I went through. I should probably be dead, but I was too dumb and infantile to ever think dying was a possibility. Things didn't turn out the way I wanted my life to end up, but I have a wonderful wife, a beautiful son, a decent job, and a house in a good neighborhood. I've traveled the world. I've found some modicum of peace after everything, but I can't say I'm satisfied. Thanks for reading. Sorry if this is gibberish. I didn't have time to proofread or go over it all.
I was diagnosed with inflammatory bowel disease when I was 16. One Fall, we were dropping my brother off at Georgetown for the school year, and on the way home, I had the absolute worst, constant gas. No abdominal pain or anything, but an overwhelming amount of gas that smelled really awful, a sick smell, for the entire four-hour ride home. When we were in Georgetown, I felt a little under the weather and I didn't have much of an appetite. I had always been really thin. Like, 105 lbs. at 5'10".
Things took a sinister turn when we got home. When I went to the bathroom, blood just poured out of me. I had issues with anal fistulas when I was like two years old, and they're a symptom of Crohn's Disease, one of the forms of IBD, but beyond that, and being underweight, I didn't exhibit any obvious symptoms. But after that day, my life wouldn't be the same. I started my junior year of high school that same year, but the bleeding didn't stop. My parents were averse to putting me through diagnostic tests like colonoscopies at the time, and I had a severe phobia about needles, so we started trying to deal with it by going to my pediatrician. She was woefully ill-equipped to handle it, and honestly came across like she thought my mother was exaggerating my symptoms, and just suggested that I add more roughage to my diet, which is actually one of the precise things you do not want to do. At this point, my memory starts to get bad. I know I continued at school for a couple months. One day I woke up before school and noticed a very fine, light rash, but I went anyway. When my mom picked me up afterwards, it was everywhere, and deeply red. She couldn't believe no one at school mentioned anything to me about it, or called her, or tried to send me home. But they didn't. I think that was the last time I went to school for nearly a year. My mom had our neighbor, a wonderful man who was a dermatologist, come over to our house to look at me. He didn't say anything in front of me, but he told my mom that he thought I had cancer and that I needed to be hospitalized right away. I think, by this point, we had started seeing a pediatric gastroenterologist, but I don't remember. My mom recently looked through my records, and the Gastro actually noted that he thought I may have contracted Scarlet Fever. No one ever told us this. I started getting tests done, and I had to overcome my fear of needles really fast, because IVs weren't optional, at this point. After a colonoscopy, I was diagnosed with ulcerative colitis, a form of IBD that exclusively attacks to large intestine. It was so bad that the doctors were afraid I could suffer from something called toxic megacolon, where, if I correctly recall, your intestine is so damaged and broken that it essentially evaporates and your waste enters your body cavity.
So, in retrospect, it kind of amazes me that I was going through all of this, and no one asked to see a fucking stool sample. You'd think that would be important, right? But it never came up, to my knowledge. My parents and I would describe how much blood there was when I went to the bathroom, how much time I spent on the toilet trying to go something besides blood clots, but I was always under the impression that the doctors thought that we were just startled by the blood, or the disease, and we were overstating the severity, despite seeing my declining appearance, or looking at my actual intestine. Anyway, I was placed on a HUGE dose of prednisone and other auto-immune suppressants to try to get things under control, as well as iron supplements, because, unsurprisingly, I was incredibly anemic. It's worth noting, I was barely eating, so putting large amounts of steroids and iron into a stomach that was always empty was really unpleasant.
We tried this at home for a bit of time. I don't know how long. I remember thinking, things could have been worse. This was late Summer and early Fall or 98, so I got to stay in bed and play Klonoa, Metal Gear Solid, Xenogears, Tenchu, Ocarina of Time, and so many amazing other games during what I still contend was the best year for video games, without having to do anything else. Of course, I didn't get better, and I was getting so sick that I couldn't even focus on, let alone enjoy, reading or writing or playing games. I dropped to 79 pounds. I wasn't eating. I was so thin, I was essentially a skeleton covered with skin. It hurt to stand. It hurt to sit. I had no meat on my bones, there was nothing to pad my body. Throughout all of this, and this is something I'll come back to again and again, I never thought I could die. It wasn't even a consideration, and I don't know if my ignorance is really what allowed me to keep powering through. I just thought, this sucks, but something will change and I'll get better.
I was hospitalized, the first of dozens of times in my life, although I think it was my longest stint, or second longest. It was not a good experience. It's never fun being in a hospital, but depending on the nursing staff and your physical ability, you can take walks and talk to people and you can try not to lose your mind. I was really, really sick. They tried to do things to get me to show any signs of joy or happiness. They brought a TV in my room, and my parents brought my Saturn and PlayStation and hooked it up, hoping having my beloved video games in my hospital room would improve my mental state. I didn't think I was going to die, but I wasn't happy. We were getting into winter at this point, but the idiotic nurses told my parents I was depressed and needed to go outside the urban hospital and walk around the block to get in better spirits. 79 pounds, I was. And it hurt to just lay in bed. Standing to get into the bathroom, which I had to do frequently, was a battle. I remember one time, I was so fed up and tired that I just shit in my bed. My mom let me have it for doing that, and so I never considered doing it again. I had a tube through my nose into my stomach at this point; and they were pumping me with Ensure because of the high calorie count, to try to put weight on me. But high sugar content + empty stomach + diseased, hemorrhaging digestive tract do not mix. I would throw up, or suffer through excruciating pain. Or both. Generally just both.
It went on like this for a couple months. I switched gastros a couple times, but my case was so serious that I eventually ended up with a team of specialist doctors. You're probably thinking that I had the absolute worst doctors in history, or terrible medical care, or idiotic parents, but I didn't. The doctors are considered some of the best in their fields to this day, and my parents spared no expense in taking me to the best treatment facilities and did everything to help me and abide by my wishes, and to try to prevent my life from just derailing irreparably. I don't have any issues with how this went down. I will, eventually, have issues with my family and my doctors, but it wasn't because of anything that happened to this point. My case was abnormally severe. There were so, so many things that happened to me, where doctors would explain side effects or potential risks from medicines or surgeries, but then say, "but this only happens to like a fraction of the fraction of the people that do this," and I always fell into that small percentage. Always. Stuff they never dreamed could happen to a patient, it happened to me.
So, finally, luckily, at one point, one of my doctors came into my room when I was going to the bathroom and saw the contents of the toilet. He had what I can only describe as a panic attack. He came rushing out of the bathroom, essentially shouting that there was no hope for recovery through medications and I needed to go into surgery. I don't think I saw him again after that. We didn't rush right into surgery. I got a new team doctor lead, and the guy was brilliant. Great bedside manner, hugely intelligent. I still wanted to try to get better without surgery. But it didn't work.
So, because they thought I had colitis, I was a candidate for what I think was a relatively recent new surgery where they remove your entire large intestine and convert part of your small intestine into something resembling a colon. It's called an ileo-anal pouch. My large intestine was completely beyond repair, so I was totally fine with this, as I wouldn't end up with a bag. I did not want a bag. I was 16, and the thought of living my life with a plastic bag of shit hanging off my abdomen was unimaginable. Typically, the procedure would be two parts, one to resect the large intestine. They would construct the internal pouch from my small intestine, but divert a portion of the bowel to a temporary ileostomy while the small bowel pouch healed. Then, in six months or a year, they'd reconnect the resected bowel and reverse the ileostomy. However, the surgeon, for whatever reason, thought that they could pull it off with one surgery. This is where things start to turn, and my life is still affected because of it, to this day.
I think it was June of 99 by this point. I'm not sure. It was a while after I first got sick. I had the surgery on a Tuesday, and afterwards, everything seemed fine. I had a lot of pain and bloating, but after my body went through what it did, then having major abdominal surgery and removing a large organ, that seemed par for the course. I only remember little snippets here and there. I remember one of the old nurses stepping on my urinary catheter while I was sitting in a chair a day or two after surgery. I remember laying in bed, watching a Penguins hockey game while my dad sat at my bedside, reading Hannibal. And I remember going into shock. I was laying in bed on that Friday, and I started to shake. I've always been shaky, but this was different. It was so violent that the bed shook, and my entire family, my brothers and my parents, turned to look at me because it was so obvious. I remember my mom asking me if I was okay, and me answering, in a fog, that I was fine. Just cold. They ran to get a nurse. I had a fever of 107 F.
This part probably deserves its own little section. So, the surgeon that operated on me, he was part of this two-person surgical team at the hospital, and they were really highly regarded. But he was not the superstar surgeon. The other guy was. But the other guy was also a raging egomaniac and a misogynist. However, the day after my surgery, my surgeon left for Oklahoma City. We would later find out, although not much later, that he was leaving Pittsburgh and going to OKC to start his own surgical group there. It's also why he tried to do my stuff in one surgery, instead of two. He knew he wouldn't be there for the follow-up stuff, and he knew I didn't like the other guy. But when I went into shock, my surgeon was gone, so the technically better surgeon was who we dealt with. I remember he didn't want to do anything until after the weekend. He wanted to let things play out, and he thought I would be fine until Monday. My mother yelled at him. My mother saved my life. He told her to go shop for some groceries and go home and clean our house, get out of the hospital and do things she was supposed to do. My father, a real shitheel and actual criminal in his own right, thought this was hilarious. He laughed. But my mom didn't budge. Because of her, they put me on high doses of antibiotics over the weekend. I would have died without them.
My surgeon came back over the weekend, and when everyone was back on Monday, they ordered what's called a gastrografin enema. Essentially, they give you enemas with radioactive dye, then a radiologist takes pictures and they try to determine where problems are. I'm sure you can guess, but my pain was... it was bad. I'm crying on the train right now, just thinking about it. I could lay in the fetal position. That was it. But this test required me to straighten out my legs and roll over from side to side, and I couldn't do it. I just couldn't. But that didn't stop the radiologist. He manhandled me. Forcibly held my legs down, hit my legs and abdomen with the camera, threw me over from side to side. I know that I have not been the same since all of this happened, since I was subjected to the levels of pain I barely endured. Psychologically and emotionally I'm different, my personality is different. I'm aware of it. I know it broke me in some way. But I still never thought, at the time, that I was going to die. The radiologist lost his job. My mother saw to that. He already had complaints, apparently, on his record, but despite the fact that I was totally out of my mind at the time, I was still able to relay to my parents how he treated me.
Anyway, a catheter that they had put up my anus perforated the wall of the ileo-anal pouch that my surgeon built, my feces was leaking into my blood. I had sepsis. If not for the antibiotics, I would've been dead. My surgeon came to me, right after I got out of the room with the enema test, and told me that I had to go into surgery. Immediately. He then turned around and told my parents, who were standing probably five feet behind him, that I probably wouldn't make it. They said their goodbyes. But I didn't think dying was possible.
Somehow, I woke up. The proud owner of a temporary ileostomy. They fixed the hole, they said, but they were going to do it right this time. In three months, they would bring me back, reverse the ileostomy, and I would get better. I would be able to serve in the military, if that's what I wanted to do. I didn't, but I appreciated the encouragement. Those three months with the ileostomy, oh, man. The ileostomy products that companies offer to people, they're not good. Bags constantly leak or fall off, my skin was raw and bleeding from having stool constantly on my skin. I don't remember a lot of specific things about this time, but I know I was miserable and counting the days until my surgery, so that I wouldn't have to deal with it anymore. My family had money, so my mom tried to do what she could to raise my spirits. She bought me an import Dreamcast when it launched, and a bunch of the games, but I was too sick to play, so my friend would come over and play and I would lay in bed and watch. That's how I experienced most of the original Soul Calibur and Sonic Adventure. A shrink also started coming to my house, and I had in-home nurses.
I had the surgery. I never really got completely better. I had missed a year of school. In the Fall, I was homeschooled through the local school district for credits towards my private high school. I think in January or February, I went back to my regular school as a junior again. Only one of my old school friends treated me the same. He's still my friend, to this day. I don't talk to anyone else that I knew from high school. I still managed to finish in the top five of my class and get into a great college. But I was never right. My health still wasn't good. I still had pain, still had a small or nonexistent appetite, still had very little energy. Still didn't weigh a lot. I think I was around 110 to 115 pounds by this point. In spite of all of it, I managed to get a girlfriend and lose my virginity that summer! And the girl was cute, too! Huzzah! Of course, she was crazy and she would cause me headaches for nine years, but who thinks about consequences when you nearly died and you can get laid?
I went to school in the Fall, still didn't feel right. Had health issues through the year and a half that I was there, and I eventually transferred back home to a different school. In fact, I probably should not have gone to college right out of high school, given what happened to me and where I was mentally at the time, but my family insisted. I still had frequent appointments and diagnostics and all kinds of stuff done, but they never found anything, or so they said. Because I continued to complain about pain and fatigue, they started painting me like I was a headcase, like I was depressed, like I enjoyed being sick and the attention that came from it. My family, undoubtedly sick and tired of dealing with me by this point, also turned on me. My girlfriend was my problem. I was lazy. I had no direction. I liked being sick, I liked being in the hospital. Etc. Etc. Even my mom, my biggest advocate, lost her patience. In their defense, doctors kept saying they couldn't find anything wrong with me that would cause my severe symptoms. At one point during these years, I don't remember when, specifically, they switched my diagnosis to Crohn's Disease. Crohn's, unlike Colitis, can go anywhere in your digestive tract, from your mouth to your butthole. I was getting abscesses and fistulas, things I should not have gotten if I had Colitis, because the disease was apparently gone after taking the organ out. I had several surgeries over the next decade on smaller things, getting rubber bands through fistulas to help them drain, getting pill endoscopies removed from my small intestine after getting stuck. Twice during procedures, my heart stopped and I had to be resuscitated. I was going to college and working through all of this, as well as dating and other stuff, believe it or not. Although going to college or working wasn't exactly working well for me. I would start classes for a couple weeks, then I'd end up in the hospital and have to take Ws on my transcript to withdraw. I wasn't earning a ton of money, either, because they wouldn't be able to schedule me for months at a time. But I wasn't allowed to ease off. My family wouldn't allow it. My parents were divorced by this point, and they both threatened to stop supporting me if I didn't go to school. I relied on them for health insurance and housing, and my medical bills certainly weren't cheap.
So, right before New Years Eve 2010, I stopped going to the bathroom. Like, I couldn't go. I don't know if anyone has experience with a pouch like I had, but going to the bathroom is not a problem. Slowing your digestion down and lowering your output is the goal. Unfortunately, I stopped going because I had developed a blockage in my intestinal tract. I had to be rushed into surgery, so my bowels didn't burst. I still had the same gastro that guided me through my surgeries in high school, although the relationship wasn't great because he became dismissive of my complaints. But I had a new surgeon, and he was amazing. He's one of my heroes. Anyway, he told me mother after my surgery that he could still see remnants of my Thanksgiving dinner backed up in my digestive tract, that's how long the blockage was building up. But more importantly, he revealed something else that vindicated me. He had to take about 12 feet of my small intestine out after the blockage, and I once again woke up with an ileostomy. But the ileostomy was significant, not because my intestine had to heal from being chopped up and put back together, but because the hole in my intestine from when I was 17 never healed completely. That's right. The perforation that caused my sepsis and near death in high school was never totally fixed. It was a tiny pinhole, but it was there. My gastroenterologist had kept me on antibiotics and steroids for the 12 years since, and they masked the issue.
This is where things get (even more?) interesting. In 2004 or 2005, I don't remember exactly, I had an MRI with contrast dye, because I recently had an abscess and I was still experiencing discomfort, so they were checking to make sure everything cleared up. The radiologist noted on his write-up that it looked like there could be a pocket of bacteria behind my pouch, possibly due to a small leakage. My gastroenterologist never told me this, and apparently opted instead to read it as a shadow on the scan. The radiologist wasn't positive that it was a leak or a pocket of bacteria, it wasn't a certainty. But the gastro opted not to follow up on it at all. He just kept me on steroids and antibiotics. My surgeon, a colleague of the gastro, flatout said that the gastro was wrong and that they screwed up. I asked my gastro why he wouldn't even follow up with it, and he couldn't give me an answer. Just something fuzzy about not wanting to put me through anything invasive after everything else I'd gone through. I personally feel like he realized that they royally screwed up, and tried to cover for everyone involved. But I don't have any proof of that.
So, the ileostomy I had was hopefully temporary. My surgeon fixed the pouch that I had, but cautioned that it had suffered significant damage from being surrounded by infection for so long. However, he knew that I didn't want to live with a bag, and promised to do everything that he could to save it. He asked me to live with the bag for more than a year, at which point hopefully the pouch would have healed, and he would reverse it, if I wanted to try again. I went a year without being on medications for my auto-immune disorder, the first such prolonged period since I originally got sick in high school. I managed to finish school and get a decent, regular job. But I hated the ileostomy all the same, so after a year, my surgeon kept his word and reversed it. Almost immediately, within a couple months, we knew it was untenable. My body developed multiple fistulas and abscesses simultaneously. The pouch couldn't handle holding my feces. And that was that. I no longer had the luxury to mess around. Through the course of my ordeals, I had lost so much intestine that I am in danger of not having enough to absorb a livable amount of nutrients through eating and drinking. If I lost any after the diseased pouch was removed, I'd be eating through a tube in my arm for the rest of my life. So, back I went for one more surgery. The pouch was removed, I was given a permanent ileostomy, and my anus was completely sealed. I no longer have a butthole.
I wish I could say my issues ended there, but due to repeated abdominal surgeries, I now suffer from neuralgia and chronic pain. I'm no longer on any medications related to IBD. In fact, at no point have I ever tested positive for Crohn's, despite that being my diagnosis for almost 15 years now, since it was switched from Colitis. I had a surgery last year to remove scar tissue, sutures, and three hernias. I wanted to be a doctor or a Japanese teacher, but I was told that I wouldn't be able to do either. I lived in Japan for a few months, but had to come home because of health issues. That bridge was burned. Because of physical restrictions due to lack of a muscle wall in my abdomen and the danger of additional hernias and other complications, I wouldn't make it through medical or nursing school, where I'd be required to move and lift patients, and the odds of me tolerating just the general physical and mental stress are slim. I was told to just let it go.
I realize that this is long. This is my first time writing down even this much. I've talked about it here and there on Era and on GAF previously, but never to this extent. I don't even think my wife knows the full extent of everything I went through. I should probably be dead, but I was too dumb and infantile to ever think dying was a possibility. Things didn't turn out the way I wanted my life to end up, but I have a wonderful wife, a beautiful son, a decent job, and a house in a good neighborhood. I've traveled the world. I've found some modicum of peace after everything, but I can't say I'm satisfied. Thanks for reading. Sorry if this is gibberish. I didn't have time to proofread or go over it all.
Unfortunately my family has a ton of autoimmune disorders. My father has rheumatoid, but it was hidden apparently, he has to go to a rheumatologist once a month and is on an arsenal of medications, we've nearly lost him a handful of time to various issues such as pulmonary embolism and various clotting issues.
My sister's have thyroid disorders, one has graves, the other has hashimotos. I myself have yet to be diagnosed, but I'm fairly certain I have something and it sucks. I have progressive hearing loss, flashes and floaters in the eyes, significant arthritis in both knees, and all my joints tend to get injured absurdly easily. Could just be bad luck of course, but I'm always on the quest of finding out. In many cases autoimmune diseases can be extremely difficult to pin down. My sister's hashimotos went undiagnosed for years, they assumed her symptoms were celiac related.
My sister's have thyroid disorders, one has graves, the other has hashimotos. I myself have yet to be diagnosed, but I'm fairly certain I have something and it sucks. I have progressive hearing loss, flashes and floaters in the eyes, significant arthritis in both knees, and all my joints tend to get injured absurdly easily. Could just be bad luck of course, but I'm always on the quest of finding out. In many cases autoimmune diseases can be extremely difficult to pin down. My sister's hashimotos went undiagnosed for years, they assumed her symptoms were celiac related.
Thanks for sharing.
You had a really terrible experience, it must have took a lot to write that.
Diagnosed with type 1 diabetes two years ago at the age of 22. I would not wish it on my worst enemy. Luckily I have good insurance and have done very well with my treatment so far. It is definitely tough to realize this is a permanent way of life now.
What you need to do is go to a grocery store and buy about five different medicated shampoos for scalp problems. Each one must have a different active ingredient - selenium sulfide, charcoal, ketoconazole, zinc, salicylic acid, and others if they have them. Just buy all of them. It costs about $50 for a month's supply. Use about three different shampoos every day for a few months. It's imperative you use all the different shampoos as each shampoo has a different active ingredient that tackles the problem in its own way, and there's a compounding beneficial effect.
About five years ago I developed either psoriasis or sebhorric dermatitis on my scalp, and the dermatologist I went to said it was an autoimmune disorder and little could be done for it, and I believed him and never researched it for myself. I went unmedicated for about three years and it worsened considerably until it felt like my head was on total fire. Parts of my scalp bled.
When I discovered there were medicated shampoos for this kind of thing I bought just about every kind imaginable and overdosed on using them. Within 3 months I was 95% better, and now I'm 100% better as if I had never developed the problem in the first place. I have no itch, no tenderness, no pain, no flakes, just absolutely no trace that there was ever a problem to begin with. I still continue to use the shampoos a couple of times a week as a preventative measure because I don't ever want that to come back again.
So yeah, just nuke the problem with a cocktail of active ingredients. In my experience it took a few weeks to notice any improvement, but by two months I was definitely on the mend. It may take half a year to feel fully better, at least that's how long it took me.
You are stronger than I could ever hope to be. It's inspirational actually
Man you've had it rough. Luckily my colitis has been under control with meds. Don't know if I could've gone through what you did.
Thanks a bunch man. I'm getting on this right away tomorrow.
Christian, your post is amazing and inspirational.
Oh wow, I had no idea this thread existed. About 3 years ago I was diagnosed with Rheumatoid Arthritis. This happened because I had really bad carpal tunnel syndrome and my neurologist said I was too young to have that and asked me to investigate the cause. So a few negative blood tests and rheumatologist visits later, enough swelling started to present itself.
I've just started taking Methotrexate after trying Sulfasalazine and having an allergic reaction to it because I'm allergic to NSAIDS. I'd like to be on a biologic but my insurance says I have to take Methotrexate first. So now I'm stuck.
I've just started taking Methotrexate after trying Sulfasalazine and having an allergic reaction to it because I'm allergic to NSAIDS. I'd like to be on a biologic but my insurance says I have to take Methotrexate first. So now I'm stuck.
I have ulcerative colitis, a mild form I guess. Weird this thread is here because I'm having my first flare in 12 years and have no meds soooo I have to wait a bit. It's shitty, pun intended. My brother and sister also have varying forms of it as well.
Thank you for making this thread. My conclusion to my story is simple and to save time here it is: I am not looking to have children until gene editing becomes a proven thing.
Not so sob story thanks to modern medicine:
Since 2010, I have severe on and off pain in my Sacro Illiac Joint which I thought was a result of me being overweight. Fast forward to 2014 after having made 180 degrees in weight over a span of 8 months going from 163lbs to 110lbs the pain had subsided. I thought that was that amidst my regular exercising and all.
Fast forward some more months and the pain came back with a vengeance on the right side. Went to doctor, General Practitioner (here in Canada, that means not throwing away your life in bankruptcy thanks to provincial health insurance) and got diagnosed with Piriformis Syndrome. Sleeping, moving and especially walking became an absolute nightmare as every time my right heel hit the ground a stabbing pain would follow in the right SI joint. I kept on popping Aleve pills on empty stomach to increase its efficacy for a few hours on a daily basis.
This went on for a year and eventually and thankfully the pain subsided. Thank fuck, I thought, 't'was finally over.
In late March of 2016 I realized it was not. Out at international waters it started all over again but this time on the left side. Had to wait till mid April when the vessel berthed at Bahamas for long enough for me to seek out a doctor. I informed her of my earlier diagnosis and got myself injected with an anti-inflammatory steroid. That and Advil pills saw me through to the end of my voyage in late May.
This time, I got referred to a specialist and eventually courtesy of an MRI it was finally revealed that I was misdiagnosed earlier and that a protein, HLA-B27 had been expressing itself all this time- ankylosing spondylitis (a form of arthritis). The doctor said that they generally do not see patients my age suffering from it. Bad fucking genes. BAD fucking genes. AND, as a bonus, the reason why my right SI joint had stopped bothering me is because, like in many of these cases, the inflamed joint eventually calcified and smoothed out providing that short term comfort.
I thank my lucky stars that I eventually ended up being inducted into a program run (fully subsidized) by the province jointly with certain pharma companies specializing in treating autoimmune disorder like mine in return for my periodic progress report. The program started furnishing me with monthly inject-able vial of a serum, a class of medication generally referred to as, biologics that inhibit my immune system from going into overdrive and then some, a reason why folks on this stuff have compromised immune system.
I have been on these for around 2 years now and my life has been completely turned around. Any and all range of motion related problems I now possess are not caused by the arthritis. The only thing necessary for me has been to remain active and so I go to gym on a regular basis. AND, to put things into perspective, had I not qualified for the program and because of the lack of insurance, I would have been well and truly and utterly fucked. The price of each vial of this medication is somewhere between CAD $500 and $900.
Had things not turned out the way they did, I would have really considered suicide.
Not so sob story thanks to modern medicine:
Since 2010, I have severe on and off pain in my Sacro Illiac Joint which I thought was a result of me being overweight. Fast forward to 2014 after having made 180 degrees in weight over a span of 8 months going from 163lbs to 110lbs the pain had subsided. I thought that was that amidst my regular exercising and all.
Fast forward some more months and the pain came back with a vengeance on the right side. Went to doctor, General Practitioner (here in Canada, that means not throwing away your life in bankruptcy thanks to provincial health insurance) and got diagnosed with Piriformis Syndrome. Sleeping, moving and especially walking became an absolute nightmare as every time my right heel hit the ground a stabbing pain would follow in the right SI joint. I kept on popping Aleve pills on empty stomach to increase its efficacy for a few hours on a daily basis.
This went on for a year and eventually and thankfully the pain subsided. Thank fuck, I thought, 't'was finally over.
In late March of 2016 I realized it was not. Out at international waters it started all over again but this time on the left side. Had to wait till mid April when the vessel berthed at Bahamas for long enough for me to seek out a doctor. I informed her of my earlier diagnosis and got myself injected with an anti-inflammatory steroid. That and Advil pills saw me through to the end of my voyage in late May.
This time, I got referred to a specialist and eventually courtesy of an MRI it was finally revealed that I was misdiagnosed earlier and that a protein, HLA-B27 had been expressing itself all this time- ankylosing spondylitis (a form of arthritis). The doctor said that they generally do not see patients my age suffering from it. Bad fucking genes. BAD fucking genes. AND, as a bonus, the reason why my right SI joint had stopped bothering me is because, like in many of these cases, the inflamed joint eventually calcified and smoothed out providing that short term comfort.
I thank my lucky stars that I eventually ended up being inducted into a program run (fully subsidized) by the province jointly with certain pharma companies specializing in treating autoimmune disorder like mine in return for my periodic progress report. The program started furnishing me with monthly inject-able vial of a serum, a class of medication generally referred to as, biologics that inhibit my immune system from going into overdrive and then some, a reason why folks on this stuff have compromised immune system.
I have been on these for around 2 years now and my life has been completely turned around. Any and all range of motion related problems I now possess are not caused by the arthritis. The only thing necessary for me has been to remain active and so I go to gym on a regular basis. AND, to put things into perspective, had I not qualified for the program and because of the lack of insurance, I would have been well and truly and utterly fucked. The price of each vial of this medication is somewhere between CAD $500 and $900.
Had things not turned out the way they did, I would have really considered suicide.
I was diagnosed with Crohn's back in January of 2011. I was sick for almost 2 month's leading up to my diagnosis. I kept getting antibiotics from different doctors at the time because I didn't know what it was. Turns out, taking antibiotics during a flare up only makes it much worse. It got to a point where I had an abcess, I could barely walk from swollen legs and feet, and I had a cdiff infection, twice that year in fact. The first time I was hospitalized for 9 days and second time for almost 3 weeks. I lost almost 50 pounds in the span of months.
I have been mostly fine since then, with the occasional flare up if I'm late on my Remicade infusion, which I need every 8 weeks for the rest of my life unless a cure is found. It's a chronic condition with no cure. It has led to moments of anguish over health insurance and frankly, bouts of depression since then that I can't seem to overcome. I'm not happy with many aspects of my life and I've found myself having suicidal thoughts at times but I'm too much of a pussy to do it so I don't want anyone to freak out. I haven't given up.
I have been mostly fine since then, with the occasional flare up if I'm late on my Remicade infusion, which I need every 8 weeks for the rest of my life unless a cure is found. It's a chronic condition with no cure. It has led to moments of anguish over health insurance and frankly, bouts of depression since then that I can't seem to overcome. I'm not happy with many aspects of my life and I've found myself having suicidal thoughts at times but I'm too much of a pussy to do it so I don't want anyone to freak out. I haven't given up.
I have psoriasis on the back of my head. Currently prescribed clobestol propionate (spray) and calcipotriene (drops). Twice a day treatments. It took a while to feel like I could stop using them, but I feel like I'm there. I got a haircut recently and they couldn't tell that I ever had it. See if you can get a dermatologists opinion on those.
Hey, thread. So back in 2004 I had my thyroid taken out due to having thyroid cancer. When they took it out they said it looked like a pitbull had been at it, tested, and sure enough, I had fairly severe Hashimoto's disease. Nothing to worry about now, they said, you don't have a thyroid for your immune system to attack anymore and you'll be getting all your good, good metabolism hormones through the wonders of medical science anyway.
I've been suffering from progressively worse gut pain, fatigue, gas, and pooper issues for years. My fiance finally got me to go to a gastoenterologist find out what's going on. I've just been through initial testing (upper endoscopy and colonoscopy, some blood tests to rule out Celiac) and they want to do a few more tests to confirm and to measure how much damage there is to the small intestine, but so far everything is pointing to Crohn's. Especially since I already have a history of autoimmune dysfunction.
I have lots of inflammation from my esophagus to my stomach, which has basically destroyed the muscle that closes off between the two, and patches in the colon, large intestine, and the small part of the small intestine they were able to see. So we are going to do a contrast swallow and CT scan next week to view the rest of the small intestine to see if there's worse damage that is causing all the pain I am experiencing. I might have to do a pill camera study too, depending on how this goes. And I am doing another blood test to check for the autoimmune markers.
I used to think warmly of my Hashimoto's disease. I chose to interpret it as "oh, my body was trying to kill the cancer that was trying to kill me." It made me feel better. Guess that interpretation is out now.
I've been suffering from progressively worse gut pain, fatigue, gas, and pooper issues for years. My fiance finally got me to go to a gastoenterologist find out what's going on. I've just been through initial testing (upper endoscopy and colonoscopy, some blood tests to rule out Celiac) and they want to do a few more tests to confirm and to measure how much damage there is to the small intestine, but so far everything is pointing to Crohn's. Especially since I already have a history of autoimmune dysfunction.
I have lots of inflammation from my esophagus to my stomach, which has basically destroyed the muscle that closes off between the two, and patches in the colon, large intestine, and the small part of the small intestine they were able to see. So we are going to do a contrast swallow and CT scan next week to view the rest of the small intestine to see if there's worse damage that is causing all the pain I am experiencing. I might have to do a pill camera study too, depending on how this goes. And I am doing another blood test to check for the autoimmune markers.
I used to think warmly of my Hashimoto's disease. I chose to interpret it as "oh, my body was trying to kill the cancer that was trying to kill me." It made me feel better. Guess that interpretation is out now.
I also have hashimotos disease and cutting gluten completely out of my diet has virtually cured it. My doctor told me it was most likely the cause of it in the first place. I'm still on Synthroid, but most of my fatigue/pain is gone now.
Have you tried going gluten free?
I have Hashimoto's and Sjogren's.
With Hashimoto's, my blood results were through the roof (TSH > 80) but I never had any symptoms and I discovered it by a random blood test.
With Sjogren's on the other hand, I have a dry mouth and I need to constantly drink water otherwise it gets too hard to speak. My eyes are starting to hurt but not much. I have my TV backlight settings on the lowest. Eye dryness is something I dread getting worse later in life.
Overall, I consider myself lucky here since I have minor symptoms.
With Hashimoto's, my blood results were through the roof (TSH > 80) but I never had any symptoms and I discovered it by a random blood test.
With Sjogren's on the other hand, I have a dry mouth and I need to constantly drink water otherwise it gets too hard to speak. My eyes are starting to hurt but not much. I have my TV backlight settings on the lowest. Eye dryness is something I dread getting worse later in life.
Overall, I consider myself lucky here since I have minor symptoms.
OP
OP
I have the neurological problems associated with sjogrens as well unfortunately.
Also, I just started cimzia, has I had a super bad flare and my doctor changed my meds. My hands hurt sooo bad and I hope this kicks in soon. Take my second loading dose next Thursday
Also, I just started cimzia, has I had a super bad flare and my doctor changed my meds. My hands hurt sooo bad and I hope this kicks in soon. Take my second loading dose next Thursday
Hidradenitis Suppurativa since i was 16, apparently it runs in my mother's family but they might have a very mild version of it in comparison to me and i think I'm at about stage 2 or so. My mom rarely gets boils, abscesses or cysts in comparison to me where i get some kind of growth/tunneling every week. Sometimes it's the simple fact that my skin rubbed the wrong way against something. Right now I have maybe two flare ups on my armpits where it's the worse, but i can get them between the buttocks, thighs, near the groin. It's all....very painful. Although, I've had so many that a new boil typically pops within two or three days after it gets noticed, I can even tell how painful it's going to be and often i hope it goes quickly. The only good side is that it's made my pain tolerance go up, and has forced me to give up eating processed foods and switch to an auto-immune diet as it's believed that it's cause by 'leaky gut"
It never really occurred to me to do anything special for the Hashimoto's because it was discovered at the same time that my thyroid was removed completely and everyone just told me that would cause my antibodies to go down. Now I've been told a few times over the years that they haven't gone down as much as they'd expect given there's nothing fucking left in my body for them to be attacking, but no one acted like it was something I should worry about, so I never followed up on it. Now I feel like I probably should have.
I have tried gluten-free diets a few times for other issues, but not seen any fatigue or pain relief because of them.
You have to remember hashimotos is an autoimmune disease, even with the thyroid removed it will continue and move onto something else, another auto immune disease.
Go strictly gluten and dairy free for a few months and you should see a vast improvement. Gluten is thought to be a main cause of the disease. It's said to be caused by leaky gut, gluten molecules getting into your blood, and the immune system attacking the gluten. Molecular mimicking happens, gluten molecules look like our thyroid and thus it attacks the thyroid too. Dairy is another.
Nothing worked for me until I changed my diet completely.
Try this group. So much info and people in the same situation:
I've been diagnosed with Multiple Sclerosis in september last year (2018) at 30 years old, it's shit.
Few years before that, I constantly played and competed in sports since a young age, be it Baseball, Gymnastic, Taekwondo, Boxing and some Kickboxing..
Nowadays though? Going through my day is like being dragged in mud or engulfed in quicksand, some days the MS fatigue alone is so freaking debilitating that I feel defeated before I even get out of bed.
Worst attack I've had so far, the one that had me diagnosed for MS; I had no hot/cold sensation on the left side of my body, I would fall down simply walking or leaning forward as if my legs and balance would just stop functioning/responding. I had a constant buzz/electric sensation in both my hands and legs, and I had barely enough strength in my hands to hold ustensils. Had difficulty pressing buttons on controllers and for sure as hell couldn't write anything. Pretty much lasted more than a month, and the shit had me terrified. I also fell out of the showers while I was hospitalized and almost had my throat cut opened by a stupid horinzontally opened window. Luckly it just left a bruise that lasted a couple weeks. That was a scary moment.
Have a appointment with my neurologist specialised in MS next tuesday and we'll be talking about a possible Trigeminal and Occipital neuralgia diagnosis. I've been having attacks that reflects pretty much the symptoms of both. Having the feeling that your forehead/cheekbones/jaw/eyes/nose and the base at the back of the head are being crushed or that it's giving a burning sensation is about the most pain I've had to deal with my entire life. Thank god I had some Clonazepam on hands (anticonvulsants). No wonder "The Scream" painting by Munch has been used as a symbol of facial pain generally, but also specifically of trigeminal neuralgia.
Face feels like it's being pressed in a vice.
The anxiety over next potential flareups is driving me up the wall, except I'm feeling too damn tired to do it. Feels like I'm constantly sleeping or napping yet never feel energised, and if I somehow do feel energised when I wakeup, give it a hour or two and it's back to honing my best impression of a sloth.
Feels somewhat good writing about it even though it's just me whining.
Few years before that, I constantly played and competed in sports since a young age, be it Baseball, Gymnastic, Taekwondo, Boxing and some Kickboxing..
Nowadays though? Going through my day is like being dragged in mud or engulfed in quicksand, some days the MS fatigue alone is so freaking debilitating that I feel defeated before I even get out of bed.
Worst attack I've had so far, the one that had me diagnosed for MS; I had no hot/cold sensation on the left side of my body, I would fall down simply walking or leaning forward as if my legs and balance would just stop functioning/responding. I had a constant buzz/electric sensation in both my hands and legs, and I had barely enough strength in my hands to hold ustensils. Had difficulty pressing buttons on controllers and for sure as hell couldn't write anything. Pretty much lasted more than a month, and the shit had me terrified. I also fell out of the showers while I was hospitalized and almost had my throat cut opened by a stupid horinzontally opened window. Luckly it just left a bruise that lasted a couple weeks. That was a scary moment.
Have a appointment with my neurologist specialised in MS next tuesday and we'll be talking about a possible Trigeminal and Occipital neuralgia diagnosis. I've been having attacks that reflects pretty much the symptoms of both. Having the feeling that your forehead/cheekbones/jaw/eyes/nose and the base at the back of the head are being crushed or that it's giving a burning sensation is about the most pain I've had to deal with my entire life. Thank god I had some Clonazepam on hands (anticonvulsants). No wonder "The Scream" painting by Munch has been used as a symbol of facial pain generally, but also specifically of trigeminal neuralgia.
Face feels like it's being pressed in a vice.
The anxiety over next potential flareups is driving me up the wall, except I'm feeling too damn tired to do it. Feels like I'm constantly sleeping or napping yet never feel energised, and if I somehow do feel energised when I wakeup, give it a hour or two and it's back to honing my best impression of a sloth.
Feels somewhat good writing about it even though it's just me whining.
Me and my siblings all have auto-immune diseases. It's interesting.
One sibling is Type 1 diabetic ("Childhood diabetes", though she developed diabetes as a young adult)
One sibling has Addison's Disease, which is fairly rare and devastating if gone untreated... It will kill you dead in short order. She lived overseas at the time but had to move back to the US because NHS wouldn't cover the medication at the time, and it was a life or death decision for her. I remember picking her up at the airport expecting to see my sister (vibrant, early 30s, etc) and she was wheeled off in a wheelchair, gaunt, vomiting profusely, extremely ill. In the time since, though, she's fully recovered but just now has to deal with the side effects of her medicine which aren't pleasant to live with, but much better than being dead. Famously, or infamously, John F. Kennedy had Addison's Disease, but it went undisclosed until long after his death. This has oft-gone misstated that "If JFK wasn't assassinated he wouldn't have lived long anyway..." That's not true, he was receiving contemporary treatment for Addison's Disease (synthetic cortisol and other hormone therapies) and would have continued to live a long life... His rumored flare-ups didn't continue into his presidency, and the biggest risk to his health was likely alcoholism, not Addison's.
And I have Hypothyroidism, which is very easy to live with. If I had to choose any of those, I'd obviously take Hypothyroidism. The biggest risk is that synthetic thyroxine gets fucked around with by pharmaceutical companies similar to insulin.
My mother in law claims to have Hashimotos but I think it's just because she's googled symptoms, and says she has every symptom ... yet never discloses whether her bloodwork actually suggests she has Hashimotos or any diagnosis from a doctor. She's also the type who tells her children that she probably has cancer, or that she probably has some other malignant disease, and when someone asks like "Wtf you have cancer??" she's like "Well, I don't know I could have cancer..." So, take that as it may.
One sibling is Type 1 diabetic ("Childhood diabetes", though she developed diabetes as a young adult)
One sibling has Addison's Disease, which is fairly rare and devastating if gone untreated... It will kill you dead in short order. She lived overseas at the time but had to move back to the US because NHS wouldn't cover the medication at the time, and it was a life or death decision for her. I remember picking her up at the airport expecting to see my sister (vibrant, early 30s, etc) and she was wheeled off in a wheelchair, gaunt, vomiting profusely, extremely ill. In the time since, though, she's fully recovered but just now has to deal with the side effects of her medicine which aren't pleasant to live with, but much better than being dead. Famously, or infamously, John F. Kennedy had Addison's Disease, but it went undisclosed until long after his death. This has oft-gone misstated that "If JFK wasn't assassinated he wouldn't have lived long anyway..." That's not true, he was receiving contemporary treatment for Addison's Disease (synthetic cortisol and other hormone therapies) and would have continued to live a long life... His rumored flare-ups didn't continue into his presidency, and the biggest risk to his health was likely alcoholism, not Addison's.
And I have Hypothyroidism, which is very easy to live with. If I had to choose any of those, I'd obviously take Hypothyroidism. The biggest risk is that synthetic thyroxine gets fucked around with by pharmaceutical companies similar to insulin.
My mother in law claims to have Hashimotos but I think it's just because she's googled symptoms, and says she has every symptom ... yet never discloses whether her bloodwork actually suggests she has Hashimotos or any diagnosis from a doctor. She's also the type who tells her children that she probably has cancer, or that she probably has some other malignant disease, and when someone asks like "Wtf you have cancer??" she's like "Well, I don't know I could have cancer..." So, take that as it may.
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I have been dianosed with rheumatoid arthritis for 11 years, just recently diagnosed with hypothyroidism and tested positive for lupus in November 2019.
I take enbrel and plaquenil for my RA/lupus, and levothyroxine for the hypothyroidism. I also take prescription strength folic acid to try and counter the effects of the plaquenil, and diclofenac gel for topical joint pain. I get regular joint aspiration and steroid injections in my most effected joints.
I have terrible "injection site reactions" to the enbrel. Dinner plate sized red rashes that are raised up, hard, itchy, and just painful. But my insurance will not let me switch biologics so I'm stuck with it and have been for 1.5 years.
I cannot work a "regular" job. I have a small internet business but the truth is we rely on my husband's income as the primary source of income. It sucks, I struggle with feeling totally worthless and my anxiety makes me worry my husband will find someone better and leave me. I want to be clear, he wouldn't, but I still struggle with these feelings.
I think that's something that many of us struggle with but is not talked about: the mental toll of having an autoimmune disease. You are sick, feel terrible all of the time, have to make serious changes to your lifestyle, have to give up on your dreams/the life you wanted.
I take enbrel and plaquenil for my RA/lupus, and levothyroxine for the hypothyroidism. I also take prescription strength folic acid to try and counter the effects of the plaquenil, and diclofenac gel for topical joint pain. I get regular joint aspiration and steroid injections in my most effected joints.
I have terrible "injection site reactions" to the enbrel. Dinner plate sized red rashes that are raised up, hard, itchy, and just painful. But my insurance will not let me switch biologics so I'm stuck with it and have been for 1.5 years.
I cannot work a "regular" job. I have a small internet business but the truth is we rely on my husband's income as the primary source of income. It sucks, I struggle with feeling totally worthless and my anxiety makes me worry my husband will find someone better and leave me. I want to be clear, he wouldn't, but I still struggle with these feelings.
I think that's something that many of us struggle with but is not talked about: the mental toll of having an autoimmune disease. You are sick, feel terrible all of the time, have to make serious changes to your lifestyle, have to give up on your dreams/the life you wanted.
Your post really jumped out at me.
My wife got diagnosed with RA this spring and goes through the same feelings. She actually went through a phase of begging me to leave her this summer when symptoms were at their worst. I know she's still guilt ridden though. So far she's allergic to everything they tried(hydroxichloriquine and sulfasalazine) and symptoms are slowly getting worse. It's probably methotrexate time according to the rheumatologist.
We rely on my income as well and I got laid off the day her lab results came in so 2019 hasn't been fun at all. Fortunately I start a new job next week so she can resume treatment. Hopefully they find something that works soon.
I never saw this thread until I myself was diagnosed with something autoimmune. Go figure.
I was just diagnosed with alopecia and am currently taking steroids to hopefully tell my immune system to chill out. The revelation that I have an autoimmune condition is making so many things in my head click all of a sudden. I'll be talking to my GP at my next appointment about a laundry list of things I've perceived as benign to annoying over the years to see if there's any underlying condition to address.
My issues are a lot less severe than most in this thread, but seeing a place like this here is comforting all the same. Best luck to all of you.
I was just diagnosed with alopecia and am currently taking steroids to hopefully tell my immune system to chill out. The revelation that I have an autoimmune condition is making so many things in my head click all of a sudden. I'll be talking to my GP at my next appointment about a laundry list of things I've perceived as benign to annoying over the years to see if there's any underlying condition to address.
My issues are a lot less severe than most in this thread, but seeing a place like this here is comforting all the same. Best luck to all of you.
Next Sunday I am going to start a Whole30 regimen, with the plan being to transition to AIP in a few months. I think going straight to AIP is too restrictive for my husband and I, so I'm trying to make a smoother transition by doing Whole30 first.
My autoimmune issues are out of control, even with meds, and I've hit the point where if I have to give up gluten and potatoes, then so be it. I've read too many success stories of cutting gluten, nightshades, and the like really helping with hypothyroidism for me to put off trying any longer.
I'll keep this thread posted with my successes and failures.
My autoimmune issues are out of control, even with meds, and I've hit the point where if I have to give up gluten and potatoes, then so be it. I've read too many success stories of cutting gluten, nightshades, and the like really helping with hypothyroidism for me to put off trying any longer.
I'll keep this thread posted with my successes and failures.
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I have severe UC that medication is working on me. I have been doing gluten free as best as I can since Feb. it hasn't made a lick of difference. If yo I don't have celiac, gluten is probably not any cause of your issues.
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Really great and interesting video about autoimmune diseases and the correlation with women (cis and transgender, which is really interesting)
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Happy for you. It sounds like you went through a genuine nightmare and made it through.
Cheers bud. Yeah so since that last op (2 years, wow), I've been almost completely pain free apart from some new, and not so fun extreme migraines and severe photophobia. My body will always be a bit shit and I've learned to just take these things in my stride, and apart from that I feel pretty good.
Back in the day the UK used to refer to type 1 as "juvenile" and type 2 as "age onset". But they dropped that naming convention donkey's years ago as they started seeing more and more older people getting type 1 (I was diagnosed in July 1993 at the age of 19) and, especially due to the growing amount of obesity, more and more kids getting type 2.
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Since I see this thread got bumped, I just want to say Doctors are fucking worthless. They still know anything about these diseases or how to stop them. You would think more research would be done in this field. Every single clinical trial out there for drugs is an immunosuppressive type drug. I think Doctors need to get past that and look for the reasons why the immune system starts attacking good tissues.
I know I'm generalizing, but I'm sick and tired. I'm frustrated.
I know I'm generalizing, but I'm sick and tired. I'm frustrated.
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I'm going to be switching rheumatologists soon for the same reason. She doesn't help me at all, and time I have a new problem she sends me to a specialist instead and she refuses to take my exhaustion and pain seriously. I have freaking lupus (my ANA is positive again so now its lupus too?)/RA/sjogrens I need support other than a biologic and plaquenil damn.
You've got a great outlook and overall disposition for someone in your situation. That's already half the battle won. A lot of people get dealt a shitty hand and can't ever fully come to terms with it. You've got an incredible story, and I'm sure you'll never cease to inspire people. Thanks for sharing.
Compared to everyone else here, mine is relatively benign, just run of the mill Seb Derm. It was initially pretty debilitating to my self confidence, but I managed to get past that with a diet change and lifestyle change, with occasional flareups. The more worrying thing to me is in my family. Grandmother has MS and hashimotos as well as sensitive vitalgo, Great Grandfather had parkinsons and many strokes/neurological problems. My mother so far seems to be pretty healthy, but I do worry about what I will get as I get older.
Vitiligo checkin in. It was rough in the beginning and I went into a depressive mood for a while (wouldn't call it depression tbh, just felt gloomy). As time went by I just stopped caring about it. Now half my face is white and I have spots all over my body but I just sort accepted it. I sometimes forget I even have it unless someone brings it up.
This is.. something. I'm literally speechless. I'm sorry you had to go through something like this.
Shitty doctors for one and all!
In almost the exact same position. Been diagnosed for 12 years with RA, latest rheumatologist thought to test me for lupus which came back positive but they aren't doing anything for it (say what??). Just take this biologic that DOESN'T WORK and some plaquenil, that's all your insurance will approve*.
*I just finished the latest prior-authorization gauntlet for my biologic for January 2020, so glad I have to deal with this every 6 months for the rest of my life. BCBS doesn't give a crap that I've been taking this same drug for 2 years now, they just want to make me suffer.
I have terrible pain, my rheumatologist literally shrugged and said "You're getting old." I AM 32 YEARS OLD, THAT'S NOT THAT OLD. Last visit doctor decided to give me some surprise steroid injections, I turned red and swelled up like I never have before. I looked like an oompa-looma. When I dutifully reported it, the office said, "Well next time take benadryl before your visit." Pretty hard to do when I didn't know I was getting the injections done until about 2 minutes before they happened, but sure, it's my fault.
I've also been struggling with severe hypothyroidism. Just diagnosed in fall of last year. I recently went back through doctor's notes (the ones you don't see unless you ask for them) and in notes from 2008 there is a note at the top that says "Hypothyroidism?". That rheumatologist never said a word to me about it, nor had any since. It was my primary care doctor who finally decided to test for it and the results came back hilariously terrible. I've been on meds for the hypothyroidism for 6 months now and not a thing has changed. I'm beginning to think it's more than "just" hypothyroidism.
I'm just so tired of being treated like a sub-human piece of trash.
I'm just so tired in general. I think we all are.