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(My Story) Looking for answers!

Hello all, I am new to this but have a feeling that I may have some type gastrointestinal disease, possibly crohns.

Please bear with me as this post may be a bit long.

Roughly 7 months ago I got super sick, doctors never diagnosed me with anything but said I had some kind of very bad viral infection. Was tested for Covid, mono, bacterial infections, fecal tests, all came back clean. Around that time my symptoms were mainly GI, upset stomach, diarrhea, vomiting/nausea, loss of appetite, throat felt super think and it was hard to swallow anything. Had an endoscopy and a colonoscopy, both came back normal. After a couple months of going through that and 30 pounds lost, I started to get better from that part of the Illness and started having nerve related issues. I gained most my weight back but still felt ill everyday plus some mild right side flank pain. My arms and legs always felt like they were burning and my lower back as well, also had full body muscle twitches which spooked the heck out of me. Since day 1 my ears have always been ringing and popping daily. I was sent to a rheumatologist and they did a full blood work up, where I tested Ana positive but clean of everything. No sjorgens, lupus, RA or any other autoimmune disorder. After a couple months of nerve related issues I was sent to two different neurologists. Both conducted emgs and told me my emgs were clean, no peripheral nerve damage, absolutely no signs of als, and no pinched nerves. Also brain mri with contrast normal and lower lumbar mri normal with a couple discs protruding. Over the last few months I have good days and bad days when it comes to my nerves and overall malaise feeling. I have consistently been constipated over the last few months where my stool is usually super flat.
Well a couple of weeks ago I had an mri with contrast and barium swallow performed roughly a week ago. Around that time I started to feel a tad better even my diarrhea came back and I wasn’t as constipated. Literally the day after the mri I started to get a burning/stabbing sensation on my lower and upper right abdomen. Same location burns when I eat and drink anything. It comes and goes and sometimes it’s super painful and sometimes my lower back pain and left arm pain is worse. My hands are super itchy especially my fingertips. I have been to the hospital over 10x since this illness and everything comes back normal including my bloodwork.

Here are the results of my mri:
Gastrointestinal: Stomach, duodenal sweep, jejunal and proximal ileal loops appear normal. Multiple ileal loops in pelvis and RIGHT lower quadrant appear less than maximum distended somewhat limiting wall and lumen evaluation. Terminal ileum is less than maximally distended also limiting evaluation. Nevertheless, minimal wall thickening and mild hyperenhancement of terminal ileum appear to be present compared with more proximal ileal loops. No inflammatory change in adjacent fat. Recommend colonoscopy with endoscopic evaluation of terminal ileum and if needed tissue diagnosis for definitive evaluation. Moderate RIGHT colonic stool, poor LEFT colonic distention. No obvious pathologic wall thickening or hyperenhancement of colon.

Any opinions or direction would be greatly appreciated.
Sick and tired of being sick and tired.
 
I had ongoing neurological issues bit more than 2 years ago, had EMG just like you did, found minor abnormalities but also in general cleared of serious neuro diseases. My neuro was convinced I have metabolical reasons for my symptoms but couldn't find anything on blood tests or elsewhere to justify it, also CT and colonoscopy was basically normal. I got diagnosed with Crohn's a bit less than a year ago, based on elevated fecal calprotectin, colonoscopy that was only mildly abnormal in the ileum, biopsy showing some chronic and active inflammatory signs, and a clear MRI, after which an MRE was ordered (I think that is actually what you had) that gave very similar results to yours - mild thickening of terminal ileum even without full distension. Definetly a fecal calpro and ileocolonoscopy with biopsy would be warranted in your case. Btw I also tested positive for ANA recently, said to be without any clinical significance.

Although Crohn's symptoms can be very individual, I dont see the hallmarks of it in your case at first glance - but that could just mean you have a weirder case. A lot of what you described could be driven by health anxiety - I actually got a lot of improvement symptomwise after cognitive behavioural therapy 2 years ago. My Crohn's onset was very obvious, basically liquid stools 4-5x a day chronically. But I did have IBS like symptoms for many many years before that.
 
Thank you for the post. Yeah I’m not sure what’s going on with me, guess I’m hoping it’s something treatable like that and not something terminal. Health anxiety is something I think I have been dealing with since the start of all this. Not having answers drives me wild, then googling everything doesn’t help. My Gi doctor just put a lab order in again for fecal testing. Even though I have already had a colonoscopy and endoscopy my mind keeps telling me something bad is wrong. I googled distended ileum and of course a couple gi diseases pop up like crohns, but so does adenocarcinoma’s of the small intestine. I’m requesting to have my mineral and vitamin levels tested again as well. Hopefully I get an answer sooner than later.
 
Thank you for the post. Yeah I’m not sure what’s going on with me, guess I’m hoping it’s something treatable like that and not something terminal. Health anxiety is something I think I have been dealing with since the start of all this. Not having answers drives me wild, then googling everything doesn’t help. My Gi doctor just put a lab order in again for fecal testing. Even though I have already had a colonoscopy and endoscopy my mind keeps telling me something bad is wrong. I googled distended ileum and of course a couple gi diseases pop up like crohns, but so does adenocarcinoma’s of the small intestine. I’m requesting to have my mineral and vitamin levels tested again as well. Hopefully I get an answer sooner than later.
This is exactly why you should stop googling and get help - such as the cognitive behavioural therapy that helped in my untreated health anxiety before. Lets take the above one as an example - without any medical knowledge or context you take a phrase out of the radiology report and start googling. "Distended ileum" is not a pathological finding, before MRI they make you drink a liquid that will fill up your intestines. This is what they call "distension". So when they say xyz part of your intestine is not distended, it simply means there is not enough liquid in it (again, completely normal, most of the time not everything will be fully distended) so they cannot examine it as reliably as if it would be fully distended. Because if its distended, you can measure the wall thickness etc, without it, the image is hard to read.

So basically this just describes the procedure not anything about your intestine per se. This is just one example out of many ways that you can waste your time and get your anxiety to spiral out of control. Even though my health anxiety is much much better now, I still have symptoms lingering from those dark times, that appeared then and will probably never go away. Anxiety really hurts you and you should seek treatment for it.
 
Hello all, I am new to this but have a feeling that I may have some type gastrointestinal disease, possibly crohns.

Please bear with me as this post may be a bit long.

Roughly 7 months ago I got super sick, doctors never diagnosed me with anything but said I had some kind of very bad viral infection. Was tested for Covid, mono, bacterial infections, fecal tests, all came back clean. Around that time my symptoms were mainly GI, upset stomach, diarrhea, vomiting/nausea, loss of appetite, throat felt super think and it was hard to swallow anything. Had an endoscopy and a colonoscopy, both came back normal. After a couple months of going through that and 30 pounds lost, I started to get better from that part of the Illness and started having nerve related issues. I gained most my weight back but still felt ill everyday plus some mild right side flank pain. My arms and legs always felt like they were burning and my lower back as well, also had full body muscle twitches which spooked the heck out of me. Since day 1 my ears have always been ringing and popping daily. I was sent to a rheumatologist and they did a full blood work up, where I tested Ana positive but clean of everything. No sjorgens, lupus, RA or any other autoimmune disorder. After a couple months of nerve related issues I was sent to two different neurologists. Both conducted emgs and told me my emgs were clean, no peripheral nerve damage, absolutely no signs of als, and no pinched nerves. Also brain mri with contrast normal and lower lumbar mri normal with a couple discs protruding. Over the last few months I have good days and bad days when it comes to my nerves and overall malaise feeling. I have consistently been constipated over the last few months where my stool is usually super flat.
Well a couple of weeks ago I had an mri with contrast and barium swallow performed roughly a week ago. Around that time I started to feel a tad better even my diarrhea came back and I wasn’t as constipated. Literally the day after the mri I started to get a burning/stabbing sensation on my lower and upper right abdomen. Same location burns when I eat and drink anything. It comes and goes and sometimes it’s super painful and sometimes my lower back pain and left arm pain is worse. My hands are super itchy especially my fingertips. I have been to the hospital over 10x since this illness and everything comes back normal including my bloodwork.

Here are the results of my mri:
Gastrointestinal: Stomach, duodenal sweep, jejunal and proximal ileal loops appear normal. Multiple ileal loops in pelvis and RIGHT lower quadrant appear less than maximum distended somewhat limiting wall and lumen evaluation. Terminal ileum is less than maximally distended also limiting evaluation. Nevertheless, minimal wall thickening and mild hyperenhancement of terminal ileum appear to be present compared with more proximal ileal loops. No inflammatory change in adjacent fat. Recommend colonoscopy with endoscopic evaluation of terminal ileum and if needed tissue diagnosis for definitive evaluation. Moderate RIGHT colonic stool, poor LEFT colonic distention. No obvious pathologic wall thickening or hyperenhancement of colon.

Any opinions or direction would be greatly appreciated.
Sick and tired of being sick and tired.
Have you had an MRI of your ileum? Did that detect anything?
 
This is exactly why you should stop googling and get help - such as the cognitive behavioural therapy that helped in my untreated health anxiety before. Lets take the above one as an example - without any medical knowledge or context you take a phrase out of the radiology report and start googling. "Distended ileum" is not a pathological finding, before MRI they make you drink a liquid that will fill up your intestines. This is what they call "distension". So when they say xyz part of your intestine is not distended, it simply means there is not enough liquid in it (again, completely normal, most of the time not everything will be fully distended) so they cannot examine it as reliably as if it would be fully distended. Because if its distended, you can measure the wall thickness etc, without it, the image is hard to read.

So basically this just describes the procedure not anything about your intestine per se. This is just one example out of many ways that you can waste your time and get your anxiety to spiral out of control. Even though my health anxiety is much much better now, I still have symptoms lingering from those dark times, that appeared then and will probably never go away. Anxiety really hurts you and you should seek treatment for it.
I actually have some cognitive behavioral therapy scheduled, but for those mri results I’m just reiterating what a general surgeon told me. After my er visit post mri they recommended I see a general surgeon. I saw that surgeon and he said I didn’t need an operation but suspected I possibly may have crohns since my ileum is distended. Now my gi has ordered a capsule endoscopy.
 
I had the mri and it basically showed inflammation of my ileum. Currently waiting for the capsule endoscopy my doctor ordered.
That's exactly where I had my chrons appear. The Ileum is a weird one because whilst you often don't get pain as much as some chrons patients you get other weird symptoms.

I got lots of brain fog, anxiety attacks, tiredness, confusion, bouts of shaking and feeling unwell, dizziness, aswell as diarrhea. I didnt get properly diagnosed for a long time because of al the strange symptoms I kept getting.
 
That's exactly where I had my chrons appear. The Ileum is a weird one because whilst you often don't get pain as much as some chrons patients you get other weird symptoms.

I got lots of brain fog, anxiety attacks, tiredness, confusion, bouts of shaking and feeling unwell, dizziness, aswell as diarrhea. I didnt get properly diagnosed for a long time because of al the strange symptoms I kept getting.
Yeah my symptoms are totally crazy, which makes me feel like I have some kind of cancer. I’ve been sick for 7 months what else could it be, I just want a diagnosis. My lab work is always normal with no abnormalities outside of low vitamin d which everyone in Michigan has. My current symptoms are all over the place:

nerve pain and burning mainly arms/hands/legs/feet
Severe constipation, which is weird because my very first bowel movement when I wake up is diarrhea, then I’m constipated for the remainder of the day.
Frequent overall malaise.
Hiccups.
metallic taste in mouth
Frequent sinus issues.

waiting on vitamin blood work to come back.
 
Yeah my symptoms are totally crazy, which makes me feel like I have some kind of cancer. I’ve been sick for 7 months what else could it be, I just want a diagnosis. My lab work is always normal with no abnormalities outside of low vitamin d which everyone in Michigan has. My current symptoms are all over the place:

nerve pain and burning mainly arms/hands/legs/feet
Severe constipation, which is weird because my very first bowel movement when I wake up is diarrhea, then I’m constipated for the remainder of the day.
Frequent overall malaise.
Hiccups.
metallic taste in mouth
Frequent sinus issues.

waiting on vitamin blood work to come back.
Oh my god this looks like exactly what I went through. Yeah I had rarely any stools that were normal it was either full on constipation or full on diarrhea. Malaise all of the time. Mine wasn't hiccups but it was burping, all of the time. Yes the metallic acid taste, I got that a lot aswell and finally yes sinus problems through the roof, almost like cranial pressure on my nose and eyes and temples.

I also had a vitamin D deficiency. I high dosed vitamin D 5000 IU a day for about 8 months and it did calm things down but unfortunately eventually that stopped working too.

The good news is I'm in remission now for chrons so if that's what it is you could always try doing what I did and hopefully you'll be in remission soon aswell.

Just a heads up about vitamin blood work, they don't/can't check for everything. I had vitamin deficiencies that are still unknown. Eating beef liver got rid of mine but we don't know what specific vitamin it was my body wasn't absorbing.
 
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Oh my god this looks like exactly what I went through. Yeah I had rarely any stools that were normal it was either full on constipation or full on diarrhea. Malaise all of the time. Mine wasn't hiccups but it was burping, all of the time. Yes the metallic acid taste, I got that a lot aswell and finally yes sinus problems through the roof, almost like cranial pressure on my nose and eyes and temples.

I also had a vitamin D deficiency. I high dosed vitamin D 5000 IU a day for about 8 months and it did calm things down but unfortunately eventually that stopped working too.

The good news is I'm in remission now for chrons so if that's what it is you could always try doing what I did and hopefully you'll be in remission soon aswell.

Just a heads up about vitamin blood work, they don't/can't check for everything. I had vitamin deficiencies that are still unknown. Eating beef liver got rid of mine but we don't know what specific vitamin it was my body wasn't absorbing.
Did you have nerve issues? It’s so debilitating. On top of that my ear pops continuously and I always have burning lower back pain. Some days It’s so hard to get out of bed. Mainly the nerve and back pain is what bothers me. I at times get right side abdominal pain but nothing compared to the nerve pain. Also ever since the start of this I always had this weird deep right side throat pain.
 
Did you have nerve issues? It’s so debilitating. On top of that my ear pops continuously and I always have burning lower back pain. Some days It’s so hard to get out of bed. Mainly the nerve and back pain is what bothers me. I at times get right side abdominal pain but nothing compared to the nerve pain. Also ever since the start of this I always had this weird deep right side throat pain.
Yes I had nerve issues, all of my issues didn't present as chrons like symptoms.

My pain was in my sides mainly, they checked my gallbladder/liver and couldn't find anything but it turns out my muscles were spasming from a long term nutritional deficiency I didn't know I had.

The throat pain I've had too, it went away on the treatment plan I followed along with the other issues but I never got to the bottom of it, I suspect it was something to do with the acidic taste in my mouth I used to always get.
 
I’m glad to hear that you are in remission and doing well. The human body is crazy, and the many different affects it has on people is weird. It’s crazy to hope I have crohns because I want an answer and I don’t want it to be something terminal. Being sick for this long and no answer causes your mind to wonder. I literally thought I had als because of my nerve and muscle pain. My thigh muscle would twitch like crazy. Once you google that, it’s all downhill.
 
I’m glad to hear that you are in remission and doing well. The human body is crazy, and the many different affects it has on people is weird. It’s crazy to hope I have crohns because I want an answer and I don’t want it to be something terminal. Being sick for this long and no answer causes your mind to wonder. I literally thought I had als because of my nerve and muscle pain. My thigh muscle would twitch like crazy. Once you google that, it’s all downhill.
I was in the exact same boat some years ago. No one knew what was wrong with me and then they weren't sure if it was chrons AND something else. Nothing explained all the symptoms. If you have got chrons I highly recommend speaking with PaleoMedicina and going the PKD route, the medications are awful and just prolong the time it takes before you get worse.

If you need any info get in touch with me

Take care
 
Just to add to what I wrote above as I see nerve issues came up. My Crohn’s is in my terminal ileum, and bit more than a year before my diagnosis, I developed fasciculations (muscle twitching) that got to a point of 2-3 muscles twitching almost every second of every day. I am pretty sure my Crohn’s had something to do with it, but I have to say, after 6 months of cognitive behaviour therapy and my anxiety getting under control, it has improved radically even though at the same time my Crohn’s itself became way more obvious. So you can have something benign, that is made unbearable by your state of mind - in a very physical sense. So you are not the only one who went down the ALS rabbit hole.
Just to offer some hope, I am also in clinical remission, some inflammation persists, but thats because I chose to manage my Crohn’s with diet and lifestyle changes as long as I can, under regular medical supervision. My only symptom is that the single stool I have every day is looser than it should be.
 
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Just to add to what I wrote above as I see nerve issues came up. My Crohn’s is in my terminal ileum, and bit more than a year before my diagnosis, I developed fasciculations (muscle twitching) that got to a point of 2-3 muscles twitching almost every second of every day. I am pretty sure my Crohn’s had something to do with it, but I have to say, after 6 months of cognitive behaviour therapy and my anxiety getting under control, it has improved radically even though at the same time my Crohn’s itself became way more obvious. So you can have something benign, that is made unbearable by your state of mind - in a very physical sense. So you are not the only one who went down the ALS rabbit hole.
Just to offer some hope, I am also in clinical remission, some inflammation persists, but thats because I chose to manage my Crohn’s with diet and lifestyle changes as long as I can, under regular medical supervision. My only symptom is that the single stool I have every day is looser than it should be.
What diet do you follow?
 
Specific carbohydrate diet, but a restricted version of it at the moment, very close to keto, as I dont seem to tolerate any fruits or milk very well either.
 
Specific carbohydrate diet, but a restricted version of it at the moment, very close to keto, as I dont seem to tolerate any fruits or milk very well either.
Good luck, if it isn't working aswell as you'd like I recommend going PKD and then building back up from that
 
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