Ongoing digestive symptoms and pain, unable to get a diagnosis

Edited , 13 users are following.

Hi all, I've recently posted and read lots of threads regarding people unable to get a proper diagnosis and suffering through this.

I have had many tests done including CT scan, CT enterography, ultrasound, colonoscopy, upper endoscopy, blood panels, blood screening for inflamatory diseases, stool and urine tests and more. Nothing was conclusive enough to establish a diagnosis.

They did find inflamation in my terminal ileum which according to GI was not characteristic of Crohn's but after 2 scans, still decided to put me on corticosteroids for 6 weeks.

I'm 2 weeks in and and don't feel any better at all. I have pain everyday mostly in my upper abdomen and mid back. I feel like something is inflamed or out of place under my upper right ribs. It causes a burning and gnawing sensation under both ribs from front to the back of ribcage. I also struggle with gas, which makes my lower abdomen distended and tender. I also have frequent belching and hiccups.

My stools are everything but normal, they often are multi-toned, pale and full of residues . It's generally consistent and somehow formed.

BUT, I've realized after eating steaks or grilled meats, my stools turned extremely bulky and disgusting . It did look somehow like a cow's dung.

I was and I'm still concerned of pancreas/gallbladder issues but nothing has showed up in the tests. Enzymes were normal, no findings on both CT scans. My elastase 1 came back over 500 which is not suggestive of EPI.

I asked for a MRI and EUS next.

Is anyone going through something similar ?

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  • Edited

    I did not mention, I'm a 27 yo male with a history of moderate to heavy drinking on the weekends. I was also a smoker during most of my twenties. I've completely stopped drinking and smoking now.

    I know it's a lot of information but here's a picture of the stools for reference.

    image

    I'm looking forward to hear similar stories.

    Thank you all

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  • Posted

    Hi Alex i saw your last thread and now this one.. i unfortunately don't have a answer but i am dealing with the same symptoms ( 2+ years) and no diagnose. i would also like to add i am 24 and drank moderately when i was in my late teen till about 22.

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  • Edited

    I feel bad for you!

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  • Edited

    Hi Alex,

    Im in the same situation. In March i just started to get pain in my back , mid to upper back sometimes on my left side . Feels like knot or something under the skin.

    I also have a dull ache under my left ribs which comes and goes .

    The back pain is there all the time to varying degrees .

    My Dr dismissed me so I paid for a private ultrasound. This showed a slightly enlarged spleen. I then got on Dr Google and was very worried about Pancreatic cancer so paid for a private Ct scan on my abdomen , this was clear.

    i had loads of blood tests which show im low in iron so taking tablets for that.

    i had a chest x ray as i have chronic sinus problems and cough up alot of phelgm.

    I am burping all the time , all day every day which started with the back pain and abdo pain.

    I am now spending loads of money at the chiropracter trying to stop the back pain, although i believe the pain to be an organ pain.

    you have had so many tests, with no resolution.

    i empathise as im constantly worrying its something sinister .

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    • Posted

      Thanks Jem for sharing your story.

      I also empathise but in some way it feels good to know that we are not alone.

      Believe me here, if it was something more sinister, doctors would have found evidence and/or you would definitely know it with your health deteriorating rapidly.

      As for pain, we seem to have a really similar pattern. I have yet to find a way to adapt and cope with it other than taking tylenols or tramadol.

      The indigestion symptoms like burping, bloating, gurgles, etc are really annoying but somehow manageable through diet and meds.

      If I can ask, how are your BM and stools ?

      Let's keep in touch

      Alex

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    • Posted

      Hey Alex?

      BM - varied . My stools are pale and can float although not every time.

      My stomach seems to be sensitive and sometimes food is ejected very quickly .

      And then other times - its totally normal.

      Alcohol and spicy food aggravate it .

      I just want a diagnosis and then i would stop worrying .

      What do you think is causing your problems ?

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    • Edited

      I'm also seeking answers, I'd like to get a diagnosis so I could kind of move on and adapt.

      I might be wrong and I desperately hope that I am but despite being 27, I feel like my lifestyle had something to do with my current condition and problems. I was a smoker, drinker and had a poor diet for most of 20's.

      What do you think is causing yours ?

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  • Posted

    hey Alex,

    sorry you're going through this, i feel for you especially when you have to become your own advocate and push for a diagnosis

    Have you talked to your doctor about an MRI yet? i know you said your enzymes were normal, and i'm assuming that means your ALT, AST, ALP? Not to discredit your doctor, but Crohns is commonly found in the terminal ileum which would give you right lower quadrant pain..but your other symptoms i believe is definitely a biliary tree/gallbladder issue. Your pale, bulky stools, right upper quadrant pain, belching, hiccups are all indicative of this. It seems like you have some irritation of your phrenic nerve which can cause some referred pain and the hiccups.

    probably a stupid question, but they've done a plain old physical exam right? anything tender when they palpated your abdomen at all?

    Do you have any other conditions, take any medication, get frequent respiratory infections, fevers, weight loss, etc?

    sorry for all the questions, i'm a passionate medical student in clinicals at the moment, and my driving force to get here is my own chronic illness and the issues I've faced. It's incredibly frustrating navigating all this, especially when doctors are too busy to really set their eyes on you and figure out what is really going on. keep sharing, here for you!

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    • Posted

      Hey, thanks for taking some of your time to answer.

      My liver and pancreas enzymes were within range. So yes, ALT, AST, ALP, Amylase and Lipase. I'm getting a liver pannel again on monday.

      The next step according to my GI would be an EUS. I've already had 2 CT in the past months.

      I do have lower abdominal pain but upper abdominal and back pain are predominant. The RUQ pain has oddly moved to LUQ now.

      I did have a traditional physical exam and indeed my epigastrum and lower abdomen were both tender.

      I don't have any diagnosed disease other than possible Crohn's. But I've been dealing with excessive sweating and skin issues similar to psoriasis ( scalp, chin, eyebrows and cheeks ) for two years now. I'm also on moderate doses of Prozac for anxiety.

      Since the beginning of all this, I did experience many times night sweats and frequent chills. My weight has gone from to 225 to 200 in matter of months.

      Do you believe it could be chronic pancreatitis ?

      Alex

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  • Posted

    maybe request a round of multiple antibiotics in case there is some bacteria/parasite that has invaded other organs? not common but have heard of that happening...

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