Severe GI symptoms, as yet unconfirmed diagnosis: Ideas of next steps?

Posted by joha @joha, May 31, 2022

Im wondering if anyone can help me. For close to a year now I've been suffering immensely, with abdominal pain, severe weakness, vomiting, appetite loss, weight loss, spasms, alternating constipation and dighreah. Initially my Doctors thought we were talking about IBD, but after having MRI scans, Ultrasounds, Colonoscopy, Gastroscopy that doesn't seem to be the case. Therefore I have been diagnosed with IBS even though the doctor doesn't actually believe its that. Nothing for the symptoms has helped. I am currently awaiting a Pillcam test. In the meantime I am totally at loss

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allim73 | @allim73 | Jul 26, 2022

In reply to @grace29 "I’ve noticed after all the standard testing is complete and they can’t find anything they write..." + (show)

That's what happened to me. Several GI drs, several colonoscopies, endoscopies, gallbladder removed, ultrasounds, CT scans, MRIs, blood, stool, and urine tests, food/symptom diary krpt for years, tried umpteen different meds, diets, etc, and still no relief.

allim73 | @allim73 | Jul 26, 2022

In reply to @noelles "The Pillcam gave me the diagnosis. The camera reached a point in the intestine where it..." + (show)

All of my GI drs have told me there's no purpose for doing a pill cam if I don't currently have anemia. It's so frustrating since it's the only part of my system the colonoscopy/endoscopy can't reach but nobody will give me that test/pill cam option.

noelles | @noelles | Jul 26, 2022

I never had anemia. I did have an obstruction

grace29 | @grace29 | Jul 26, 2022

In reply to @allim73 "That's what happened to me. Several GI drs, several colonoscopies, endoscopies, gallbladder removed, ultrasounds, CT scans,..." + (show)

My condition was ongoing stomach pain no matter what I took for it, had just about every test and nothing. Walk into my neurologist office about something else when we started to discuss my stomach issues. He knew what it was right away abdominal migraines. I’m taking a migraine product and I’m improving all the time. There are neurological cases of ACNES neurological pain in the stomach, surgeon severs the nerves pain stops.

allim73 | @allim73 | Jul 26, 2022

In reply to @grace29 "My condition was ongoing stomach pain no matter what I took for it, had just about..." + (show)

Oh wow! Thanks! I also have been getting migraines/ headaches too, and am on several meds for that with little relief. I'll look into this though. Thank you!

emmakup | @emmakup | Jul 27, 2022

In reply to @allim73 "That's what happened to me. Several GI drs, several colonoscopies, endoscopies, gallbladder removed, ultrasounds, CT scans,..." + (show)

Did you ever get a diagnosis or are you still undiagnosed? Did your pain increase after your gallbladder removal? My pains are now more frequent and intense after the operation. How long have you been like that?

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allim73 | @allim73 | Jul 27, 2022

In reply to @emmakup "Did you ever get a diagnosis or are you still undiagnosed? Did your pain increase after..." + (show)

Still no definitive diagnosis. At least 10+ years. Nothing really changed after gallbladder removal, other than regularly getting D that is mostly bile. My pain is mostly in my lower abdomen, before, during, and after a BM. Laying down with a heating pad helps a bit temporarily, and I'm on (and have tried) more medications, supplements, diet restrictions than a 95 year old (and I'm 42). I've run out of things to be tested for, and am grasping at straws.

sheilakatherine | @sheilakatherine | Jul 27, 2022

In reply to @allim73 "Still no definitive diagnosis. At least 10+ years. Nothing really changed after gallbladder removal, other than..." + (show)

It may be because of bleeding ulcers in your GI.

emmakup | @emmakup | Jul 28, 2022

In reply to @allim73 "Still no definitive diagnosis. At least 10+ years. Nothing really changed after gallbladder removal, other than..." + (show)

I am so sorry to hear that, I think it's appalling what is happening to a lot of us. I am still researching a lot and have more or less the same pains, for me, it has been 3 years, I will be sure if I find anything out I will contact you.

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anet | @anet | Jul 28, 2022

I have a friend who has something with similar symptoms. It’s called “dumping syndrome.” Caused by the stomach contents going into the small intestine too fast. Just a thought.