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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@shimonron

My name is Shimon Ron
I have some of your symptom After Colonoscopy 1.5 Yrs ago. What's Bother me is the weakness,
and the feeling to go to the bathroom all the time and I have to push so hard that you can get
heart attack and more. My Doctor suggested to go to Mayo Clinic for "Capsule endoscopy Camera". It's a wireless camera that take pictures of your digestive tract. maybe they will find the problem that we have .

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had that during my hospital stay and came back clear, noa awaiting results of barium follow through

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@shimonron

My name is Shimon Ron
I have some of your symptom After Colonoscopy 1.5 Yrs ago. What's Bother me is the weakness,
and the feeling to go to the bathroom all the time and I have to push so hard that you can get
heart attack and more. My Doctor suggested to go to Mayo Clinic for "Capsule endoscopy Camera". It's a wireless camera that take pictures of your digestive tract. maybe they will find the problem that we have .

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Have you had a celiac test. It has those symptoms and many more. They also may say pelvic floor dysfunction. Try eating gluten free for several weeks. You can have a sensitive to gluten which is not the autoimmune disease.
The scopes can only see the structure,not dysfunction.

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@joha

Amazing! Your brilliant! During my hospital stay no proper diagnosis was made however they gave me a very high dose of vitamin B which I am still taking and seems to be helping. In addition they discovered that my cortisol level was very low which also contributes to these symptoms. They gave me an injection with some and currently waiting to see if my body has accepted it. Many Thanks!

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I have MTHFR, the inability to metabolize b-12 and folate. I started on methyl folate and methyl B- 12. And in two months had energy back.I have been asking Dr. my whole life why I am so tired. Unfortunately it does not fix my Celiac. I was amazed that B-12 change could be so easy. The B are what your cells and dna have to reproduce. I am at 20% .

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@dragonfly123

I am not a doctor, but from my reading, Celiacs, is not always clear cut and dried...try cutting out wheat/gluten and see what happens. My blood test was high, but the small lab sample he took out of my gut, did not show the celiac "sprue" whatever them things are, but they are only "sprue" if you are eating wheat and I stopped. I also found that milk, occasionally, but not always, so I'm cutting out both lactose and adding lactaid enzyme along with the antibiotics. I wish you the very best, it's amazing how diverse and complicated the GI system is, and well, we never knew, kinda ignored it, and now, OMG, it says, "wake up and pay attention to me" okay!

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okay, dabbling with milk/lactose, still uncertain, and finding out more and more, taking an antibiotic ampicillin for a tooth due for a root canal, and added two different probiotics, I do have diverticulosis which they ignored, but I'm paying attention to, now...so, if my GI flora and fauna and/or whatever bugs, changed after the surgery, diet, CT scans, barium swallows! btw, Barium turns to lead in your gut, no wonder I ended up packed full of...turds. Anyhow back to, my guess is that there is some sort of a IBS, and the Linzess seems to help, but helped too much, so I quit, then started having blockage/bloating/gas, so back on it, but opened my 145 and only take a wet finger full, maybe a third, 50mcg in the morning, seems to be about right, I thought that the Linzess was prn, use as needed, but read that it s a daily thing and about a week after you stop or start, it stops, or starts working...etc. Also, back on the glycol, miralax, gas X, and added metamucil again, but pacing all of it, and since gluten free, about a couple months of no total constipation, very few hershey squirts, etc. I'm also pretty dang positive that I have some sort of tortuous colon, kind, bend, twist in the large colon, that I have to work on relaxing, breathing, pushing, and then things move along. I told them that a year ago, that they were looking at the wrong place, the hiatal hernia area, stomach, duodenum, and that I was plugged up further down the pike, and by god I'm right. So, my GI expert through in the towel, so I started reading all my labs reports progress notes, results, etc. He referred me to the Mayo clinic but humana gold ppo advantage medicaire, they don't have a contract with them, so I'm ...anyhow, did find another surgeon, and going to go talk with him, supposedly a good one, but surgeons, are like auto mechanics, they rarely have the communication skills of a pissant! blessing to all and many good AM BMS too!

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Hi all, thanks for all your comments and suggestions. I have now had a colonoscopy, Gastroscopy, MRI scans, Pill Cam which have all come back clear. I have stopped eating anything spicy, fatty, heavy, fruit and veg, meat fiber and over sugary foods and my overall stomach discomfort has greatly improved, however my pain, vomiting, alternating loose bowel movements and constipation, feeling weak and dizzy are still here. Any suggestions how to proceed, especially as my latest stool tests came back with slightly raised calprotectin level suggesting minor inflammation. In addition I sometimes get extreme pains around my ribs

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just a guess read up what you can on IBS, work on stress, excercise, metamucil, relaxation, yoga, tai chi, waterrobics, walking, gasX simethicone, good old prune juice, apple sauce, glycol, all in small amounts of moderation...and probiotics, but not sure which probiotics are ...good or not, so maybe varied, again, all in smaller amounts and moderation, and hydrate, drink plenty of water, fruit juice, fluids and avoid garlic onion and artificial sugars, avoid honey, maybe small amount of honey, none of this is medical advice, your mileage may vary...and they suggest
keep a $%^$&$#@! stupid food diary...dang it, what next?

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@joha

Hi all, thanks for all your comments and suggestions. I have now had a colonoscopy, Gastroscopy, MRI scans, Pill Cam which have all come back clear. I have stopped eating anything spicy, fatty, heavy, fruit and veg, meat fiber and over sugary foods and my overall stomach discomfort has greatly improved, however my pain, vomiting, alternating loose bowel movements and constipation, feeling weak and dizzy are still here. Any suggestions how to proceed, especially as my latest stool tests came back with slightly raised calprotectin level suggesting minor inflammation. In addition I sometimes get extreme pains around my ribs

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Hi Joha, I'm going through something very similar, nobody seems to be able to figure out what is wrong. I started with my pains 2 years ago I am 28 years old now, they thought it was my gallbladder so they took it out (I had the operation in October 2021) and the pains and vomiting are now more frequent are more intense, the pains before my gallbladder got removed appeared once a week approximately and now I get 5/6 episodes a day. I have also had numerous CAR, MRI, Colonoscopy, Gastroscopy and many other tests and same as you they come back either negative or with mild inflammation, sorry I can't help, however, if I do get a diagnosis I will be sure to contact you to try and give you answers.

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@joha

Hi all, thanks for all your comments and suggestions. I have now had a colonoscopy, Gastroscopy, MRI scans, Pill Cam which have all come back clear. I have stopped eating anything spicy, fatty, heavy, fruit and veg, meat fiber and over sugary foods and my overall stomach discomfort has greatly improved, however my pain, vomiting, alternating loose bowel movements and constipation, feeling weak and dizzy are still here. Any suggestions how to proceed, especially as my latest stool tests came back with slightly raised calprotectin level suggesting minor inflammation. In addition I sometimes get extreme pains around my ribs

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Sounds like chronic pancreatitis that has been missed.

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@trents

Sounds like chronic pancreatitis that has been missed.

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How could all it be missed with all the testing iv'e had and what is there to do about it?

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I had sane symptoms for years , my doctor did a colonoscopy, liver biopsy, ERCP, endoscopy still no answers even told me he could not figure it out, I felt defeated. Got a second opinion from Mayo they ran tests and did another colonoscopy and endoscopy and found I had SIBO. The first doctor didn't even check for that. Not sure if you been tested for that if not , I highly recommend asking.

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