Aa
Chronic Undiagnosed Illness I’ve Had Since Birth
I’m a 38 year old female. I’m going to try to explain this as easy as I possibly can. I’ve been having these symptoms since well, I was a baby. My mom says tho that this has been happening to me since I was a baby. She would notice I would spit up all the time, while dirtying my diaper, and I would cry while this was going on. My mom says it only happened maybe 3 or 4 times in my first year of life, but noticed as I got older, could talk and explain how I felt, that it would happen more and more. My earliest recollection of this was when I was 5 years old. I remember it very vividly because it happened while I was in school, kindergarten. My teacher found me lying on the bathroom floor in a fetal position, passed out. I’ll explain all my symptoms here in a little bit. I remember waking up, with her carrying me to the ambulance. It use to happen very infrequently when I was younger, maybe a few times a year. The older I got, the more and more this happened. Now I’m 38, and it’s happening every month multiple times a month. I’ve been to the hospital so many times for this. Everytime they’ve said it was just a stomach bug, or food poisoning. Even my family doctor is stumped. He don’t know what’s wrong with me, but knows it’s not normal. I can’t find answers ANYWHERE and it’s getting so much worse. I’m going to explain what happens to me, but I am going to forwarn you this is going to be very graphic, and contain pretty personal, disgusting stuff that some of you may not be able to handle if you have a weak stomach. I’m going to explain it, so stop reading now.......You’ve been forewarned......
Sometimes this weird medical condition starts off with me getting these very very weird burps. Now, this don’t happen every single time...Id say maybe 70% of the time I get this, these burps happen. The reason they are weird is because the best way to explain it is it’s like Im passing gas, but thru my mouth. I call them “stinky burps”. It’s the most disgusting thing EVER, but when I get this, I know what’s to come. Its like my warning alarm. Now sometimes like roughly 30% of the time, this step doesn’t even happen. So if I don’t get the stinky burps, I jump into the next phase which is my stomach, and intestines begin to hurt. The pain starts out dull, but then intensifies to serious/severe pain. This is when I go to the bathroom, and the hell begins.............For anywhere between a half an hour, or countless hours go by where I am uncintroabally vomiting, and going #2 simultaneously at th3 same time. I know the #2ing is too much info, but I need to explain this as best as possible in hopes I can find help! I’ve gone 38, almost 39 years with this, and haven’t gotten anywhere near a diagnosis. Also while I’m going the #2, it’s not like a little bit. It’s like A LOT! Like I never knew a human being could hold that much inside. Not only that but while all this is going on, I am sweating uncontroabally, like literally dripping sweat from every single body part. I try so hard to make myself better but even if I move the slightest, it makes me worse because while this goes on, I’m in the most severe/excruciating pain in my abdominal region. It’s all centered around my stomach and intestines. I manage sometimes to get up, go lay down in bed. While in bed I have to lay on my side, and I can’t move at all cuz it makes me worse. Most of the time tho I end up dragging myself out of bed Togo back to the bathroom, or even crawl back to the bathroom to vomit, and #2 all over again. This will go on for hours upon hours on end, sometimes even a day or two. Most of the time it ends up getting so bad that I pass out from the pain, and my husband or children call an ambulance. The times that has happened the doctors have no clue what’s wrong with me even till this very day have no idea what’s wrong with me. While I’m in the hospital they always put an IV in me, pump me full of morphine or Demerol, give me lots of different meds for nausea, and stuff. Sometimes I’ll end up getting better to where I can go home, and the symptoms won’t return, but most of the time once the meds they give me wear off, I get sick all over again. I will say sometimes when I get this it feels like I am dying the pain gets that bad, and I am one who can tolerate pain very well. I’ve had 3 children, all natural births, no medication, no nothing. To tell you more about how high my pain tolerance is, Years ago when my appendix ruptured, I went to my softball game and even played. So yeah, my pain threshold is high. All these years of long this, I have noticed the more I eat, the more this weird illness happens, so I really don’t eat like I should.....but here’s something even weirder.....even tho I don’t eat like I should, and we’ll hardly eat at all like maybe one meal a day max, or just much on a little something a few times a day.....even tho I hardly eat enough, and with how frequently I get this illness, I am overweight. I don’t know how I can be this overweight with all the times I get sick like this, and how infrequent I eat. This is happening several times a month now at the age I’m at, and is getting worse. Approximately 10 times a month, sometimes even more if I eat more. Like I said I do notice the more I eat, the worse it gets, and more frequent it happens. After this happens, it usually takes me quite a few days to recover. I get so physically drained everytime this happens. Sometimes now with how often this is happening, I don’t even fully recover, and it happens again. I’ve been lucky because thus far, it hasn’t happened when I’m suppose to be working. I just started this great job, and I’m petrified of getting this and not being able to go to work, or it happening while Im at work. Sometimes I don’t get the “stinky burps” that warn me, and go right into the mode where my abdominal are starts hurting, and then I get sick. I’ve seen several doctors, family physicians, ER doctors, and Im still undiagnosed. Can anyone help me shed some light on this? Does anyone know what this is, or have the same symptoms? I would appreciate any help anyone could give. Thankyou for reading this. Sorry it’s so graphic, but I needed to explain it in as much detail as possible in hopes Ill be able to finally find some answered after having this my whole life. Thanks again, and Happy Holidays!
Sometimes this weird medical condition starts off with me getting these very very weird burps. Now, this don’t happen every single time...Id say maybe 70% of the time I get this, these burps happen. The reason they are weird is because the best way to explain it is it’s like Im passing gas, but thru my mouth. I call them “stinky burps”. It’s the most disgusting thing EVER, but when I get this, I know what’s to come. Its like my warning alarm. Now sometimes like roughly 30% of the time, this step doesn’t even happen. So if I don’t get the stinky burps, I jump into the next phase which is my stomach, and intestines begin to hurt. The pain starts out dull, but then intensifies to serious/severe pain. This is when I go to the bathroom, and the hell begins.............For anywhere between a half an hour, or countless hours go by where I am uncintroabally vomiting, and going #2 simultaneously at th3 same time. I know the #2ing is too much info, but I need to explain this as best as possible in hopes I can find help! I’ve gone 38, almost 39 years with this, and haven’t gotten anywhere near a diagnosis. Also while I’m going the #2, it’s not like a little bit. It’s like A LOT! Like I never knew a human being could hold that much inside. Not only that but while all this is going on, I am sweating uncontroabally, like literally dripping sweat from every single body part. I try so hard to make myself better but even if I move the slightest, it makes me worse because while this goes on, I’m in the most severe/excruciating pain in my abdominal region. It’s all centered around my stomach and intestines. I manage sometimes to get up, go lay down in bed. While in bed I have to lay on my side, and I can’t move at all cuz it makes me worse. Most of the time tho I end up dragging myself out of bed Togo back to the bathroom, or even crawl back to the bathroom to vomit, and #2 all over again. This will go on for hours upon hours on end, sometimes even a day or two. Most of the time it ends up getting so bad that I pass out from the pain, and my husband or children call an ambulance. The times that has happened the doctors have no clue what’s wrong with me even till this very day have no idea what’s wrong with me. While I’m in the hospital they always put an IV in me, pump me full of morphine or Demerol, give me lots of different meds for nausea, and stuff. Sometimes I’ll end up getting better to where I can go home, and the symptoms won’t return, but most of the time once the meds they give me wear off, I get sick all over again. I will say sometimes when I get this it feels like I am dying the pain gets that bad, and I am one who can tolerate pain very well. I’ve had 3 children, all natural births, no medication, no nothing. To tell you more about how high my pain tolerance is, Years ago when my appendix ruptured, I went to my softball game and even played. So yeah, my pain threshold is high. All these years of long this, I have noticed the more I eat, the more this weird illness happens, so I really don’t eat like I should.....but here’s something even weirder.....even tho I don’t eat like I should, and we’ll hardly eat at all like maybe one meal a day max, or just much on a little something a few times a day.....even tho I hardly eat enough, and with how frequently I get this illness, I am overweight. I don’t know how I can be this overweight with all the times I get sick like this, and how infrequent I eat. This is happening several times a month now at the age I’m at, and is getting worse. Approximately 10 times a month, sometimes even more if I eat more. Like I said I do notice the more I eat, the worse it gets, and more frequent it happens. After this happens, it usually takes me quite a few days to recover. I get so physically drained everytime this happens. Sometimes now with how often this is happening, I don’t even fully recover, and it happens again. I’ve been lucky because thus far, it hasn’t happened when I’m suppose to be working. I just started this great job, and I’m petrified of getting this and not being able to go to work, or it happening while Im at work. Sometimes I don’t get the “stinky burps” that warn me, and go right into the mode where my abdominal are starts hurting, and then I get sick. I’ve seen several doctors, family physicians, ER doctors, and Im still undiagnosed. Can anyone help me shed some light on this? Does anyone know what this is, or have the same symptoms? I would appreciate any help anyone could give. Thankyou for reading this. Sorry it’s so graphic, but I needed to explain it in as much detail as possible in hopes Ill be able to finally find some answered after having this my whole life. Thanks again, and Happy Holidays!
I am 40 and have almost identical issues. I have had every single test in the book. Neuro, gastro, cardio. You name it, I’ve had the test. As far as any doctor can figure out it’s something to do with the vagus nerve and missing a bowel moverment. The only medication that every worked for me was zelnorm which is no longer on the market. During a cardio workeup they did a tilt table test and found that during some of these episodes my heart was actually pausing. I have a Micra pacemaker as back up. The way it has been summed up is my vagus nerve is hypersensitive, the colon is in front of it. If it gets triggered it’s the worst pain of my life. I’m not pushing at all but I sit on the toilet because well, I eventually black out and lose my bowels and bladder. The vomiting has been diagnosed as a twisted bowel and it’s actually fecal content that is coming up. I don’t have that part as much as everything else. Still to this day no actual diagnosis. I took matters into my own hands, miralax in my coffee, electrolytes daily and high dose MagOx 7 at night. I have been free of these episodes for 2 years since starting this regimen. You aren’t alone there are THOUSANDS of people on this website alone from all over the world describing the same play by play with no diagnosis.
3 Comments
DYSAUTONOMIA I found it by chance, I’m taking this info to my doctor. Something as immunoglobulin infusions can help. I think I’ve been all about connecting the bowels and black outs vs taking out the poop nightmare and focus on the blackout itself and the trigger. I recently did a defogram (barium up the butt and live x Ray as you hold and push) it actually wasn’t as embarrassing as I thought. That showed I had rectocele as well. Could be cause of the constipation that triggers the dysautonomia. I’m not throwing anything out the door until I get tested. There are 15 variations of the disease. https://www.dysautonomiasupport.org/forms-of-dysautonomia/
That's really hgelpful Ready_to_be_normal! Can you tell us more about what it was like for you, what you did and your recovery?
Hi. I’m getting ready to be set up, still a work in process to get to the infusion part. I’m also seeing a urigynocologist to discuss rectocele repair since that is essentially a prolapse. If it wasn’t for the defagraphy I would have never known about the rectocele. What would you like to know?
I WAS DIAGNOSED TODAY!!!! The name of the condition is Dysautonomia. 40 years and everything I’ve been through. My electrophysiology doctor diagnosed after she has been researching herself because I was a puzzle. Guys!!! There are 15 different version of this rare disorder. I was referred to the Cleveland clinic because they have a whole department for this disorder. I couldn’t wait to share. All the black outs, stomach pan, sweats, it has a name
1 Comments
Hey, congratulations. I hope you get to be "normal" soon :)
Sounds like your intestines twist, it’s an actual medical condition where they twist, you have all these symptoms and then they untwist and you are normal by the time the doctors test you, I wish I could remember the name because they thought I had it. It causes the foulest smelling vomit and burps because essentially stuff from your intestines come out of your mouth. I am sorry I can’t rememeber the name of the condition, it is real
I'm wondering if you just have a super sensitive vagus nerve. You've been dealing with this since you were a child, which makes me wonder if your digestive tract has a dysfunctional reaction to peristalsis. Rather than the muscles moving in a nice rhythm to push things through, they basically have a seizure and try to do all directions at once, resulting in the pain and issues on both ends. Sometimes anti-psychotic medications can sometimes help with this.
Hello~gosh, your sure have some complicated issues. I am thinking that maybe a Naturopath might be able to help, sometimes they can do wonders when the conventional MD's can't. They take the time to listen you, will prescribe tests that are not even known to the Conventional MD's, and go over a list of supplements that night be of some help. They are also allowed to order MRI's and CT scans. I definitely think you need to have a colonoscopy and sigmoidoscopy done and possibly and upper GI, there is got to be something causing you all these horrendous issues.
I hope you feel better soon.
I hope you feel better soon.
Another approach to consider is this: let's say that a doc Dxs you with IBD or Crohn's. Here from WebMD would possibly be part of recommended treatment. "One dietary intervention your doctor may recommend is a low-residue diet, a very restricted diet that reduces the amount of fiber and other undigested material that pass through your colon. Doing so can help relieve symptoms of diarrhea and abdominal pain. If you do go on a low-residue diet, be sure you understand how long you should stay on the diet, because a low-residue diet doesn't provide all the nutrients you need. Your doctor may recommend that you take vitamin supplements."
https://www.webmd.com/ibd-crohns-disease/inflammatory-bowel-syndrome#3-6
You might try some *short-term* dietary restrictions like that on your own, as long as they're not extreme or dangerous. If you experience an improvement, that's valuable info to give to any doc that you visit.
Have you ever tried an all liquid diet?
https://www.webmd.com/ibd-crohns-disease/inflammatory-bowel-syndrome#3-6
You might try some *short-term* dietary restrictions like that on your own, as long as they're not extreme or dangerous. If you experience an improvement, that's valuable info to give to any doc that you visit.
Have you ever tried an all liquid diet?
"I know in many instances when I have a Bowel movement, I get sick."
How about this idea to think over: severe IBD can cause a perforated colon. Material from the colon, with huge numbers of bacteria, can then get into the bloodstream and cause a lot of severe problems.
"Each time, and everytime since this mystery condition has gotten worse, I always had a high WBC."
Is the high WBC due to high neutrophils? The neutrophils are the immune cells mostly responsible for fighting bacteria.
How about this idea to think over: severe IBD can cause a perforated colon. Material from the colon, with huge numbers of bacteria, can then get into the bloodstream and cause a lot of severe problems.
"Each time, and everytime since this mystery condition has gotten worse, I always had a high WBC."
Is the high WBC due to high neutrophils? The neutrophils are the immune cells mostly responsible for fighting bacteria.
Could it be something like this?
https://en.wikipedia.org/wiki/Fecal_vomiting
(wikipedia is not an authoritative source for anything, but in this case it might be a starting point)
https://en.wikipedia.org/wiki/Fecal_vomiting
(wikipedia is not an authoritative source for anything, but in this case it might be a starting point)
Can you try "elemental nutrition"? It is very expensive but aims to try to avoid food sensitivities because it's all sort of predigested. (It's used, e.g., in severe cases of Eosinophilic Esophagitis -- in which patients react badly to almost every food -- though that is ever present, not periodic.)
Would you get a bad reaction if you filled your stomach with just water? IOW, is it the pressure that causes the bad reaction?
Have you traveled anywhere that might have parasites which are unknown to the docs where you live?
Do you ever have skin reactions to anything? Or very bad reactions to bee stings?
Would you get a bad reaction if you filled your stomach with just water? IOW, is it the pressure that causes the bad reaction?
Have you traveled anywhere that might have parasites which are unknown to the docs where you live?
Do you ever have skin reactions to anything? Or very bad reactions to bee stings?
Hi, can you describe what tests you've had? For instance, have you had an endoscope? Have you had biopsies of the esophagus and stomach? Stool tests looking for bacteria or parasites?
Is there an associated fever during these episodes?
(Btw, an ER is not a good place for diagnosis of mystery conditions like this.)
"...even tho I hardly eat enough, and with how frequently I get this illness, I am overweight."
If so, then it likely is from water. Some type of edema, and not all types are helped by a diuretuc med.
Do you have a family history of odd immune system conditions, like Raynaud's Syndrome or severe allergies or lupus?
Do you flush a lot out of the blue?
Is there an associated fever during these episodes?
(Btw, an ER is not a good place for diagnosis of mystery conditions like this.)
"...even tho I hardly eat enough, and with how frequently I get this illness, I am overweight."
If so, then it likely is from water. Some type of edema, and not all types are helped by a diuretuc med.
Do you have a family history of odd immune system conditions, like Raynaud's Syndrome or severe allergies or lupus?
Do you flush a lot out of the blue?
3 Comments
As far as family history, no known medical conditions that have been diagnosed. I’ve had stool testing. Traces of blood were found in it. I’ve also had my blood drawn. Each time, and everytime since this mystery condition has gotten worse, I always had a high WBC. Nobody has doe a endoscopy, nor a colonoscopy on me yet. I’ve been BEGGING for them to do it because I think it will lead them in the right direction of diagnosing me finally. Gotta wait till I have insurance. I currently don’t have any right now. Only going to last 2 weeks, but once I get it, I’m going to try to find another doctor at least not around where I live, that will actually do accurate testing. My family doctor is leading towards IBD, Chrones Disease, or ulcerative colitis. So I’ve done my own extensive research, and those 3 things keep consistently popping up. Where my troubles lye is I’m never constipated. I’ve just had this for so long, that its normal for me to go days without having a Bowel movement. I know it’s not healthy, but that’s jus5 what my body has a,ways done. I think that part my be psychological because I know in many instances when I have a Bowel movement, I get sick. The only problem there too is with those 3 things, Bowel movements are frequent. Mine are, but once I start going. After I have a “episode” and I’m done being sick, I’m able to have a Bowel movement. Then they are very frequent for a day or so, then it stops, and I go back to the beginning all over again and go days without a bowel movement. I don’t think it’s that fecal vomiting. Checked into that and read a bunch about it. A few of the sam3 symptoms, but most of them I don’t have. I think the IBD, Chrones Disease, and Ulcertive Colitus are the 3 ones I’m closest to. Guess I’ll need to try to find a good doctor, which are hard to find where I live. Might need to go to a bigger city and find a doctor who will do the accurate testing.
Even though you do not have insurance check with local hospitals, your doctor, etc.. about programs they have in place to help people pay for these expensive tests.
oops...expensive tests like endoscopy and colonoscopy (and more.)
Also I did forget to mention that I’ve changed the way I eat COUNTLESS times. I’ve done no sugars, no oils, no fats, gluten free, vegan, veggie smoothies, fruit smoothies, I’ve just tried so many different things. Sometimes my symptoms would get worse pending again on how much I would eat, or fill my stomach up, but most of the time there was no change. I need to also add that out of my 3 children, my son didn’t get this, but my daughters do have this as well. Granted it’s nowhere near as bad as mine was. They are now 18, and 14. They have flair ups maybe 5 times a year. There, I think I’ve explained it all thoroughly now. I hope someone out there can help me. 38 years of this, without getting worse, and my children having this, I’m desperate for answers. Thanks and Happy Holidays!
2 Comments
Your illness is complicated so I am sorry to hear that no doc can diagnose it. Btw, a zero fat diet is dangerous so don't do that again.
Oh I know....found that out the hard way....just wish there was someone out there...there’s gotta be. For the most part, I’ve concluded it’s something hereditary because certain generations of my family have it, but not many of us....even with those odds this medical issue is still after all these years undiagnosed. I’m just hoping after finding this website for the first time a few days ago, I can find someone who has answers...
Have an Answer?
You are reading content posted in the Undiagnosed Symptoms Community
Discharge often isn't normal, and could mean an infection or an STD.
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.
