My wife is the survivor of an emergency laparotomy

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My wife is the survivor of an emergency laparotomy, for a suspected bowel obstruction as well as portal venus gas. It's been a year and a half since that surgery and she has been suffering from gastroparesis, chronic nausea, abdominal distension upon eating anything, alternating bouts of chronic constipation and diarrhea, bile reflux as well as a hole host of weird medical occurrences since then. She gets severe abdominal pain that can't be identified as well. Her gi doctor told her that the severity of her symptoms might be the result of adhesions in the gut, but isn't confident enough in the theory to schedule any diagnostics.

She is very underweight, struggles to keep food down and has difficulty staying warm. She is subject to bouts of light headedness and occasionally passes out. On a handful of occasions she he resorted to going to the hospital due to severe abdominal pain, bloating, and burning in the throat. She has been given fluids and a new acid reflux medication every time, as well as something to relieve constipation, then been discharged with no answers. All diagnostics and blood work have come back looking normal every time.

At this point, she is can barely function normally. She struggles to get through 5 hours at a part time job 4 days a week, and besides that she can mostly only sit with a heating pad on her stomach. She has very poor quality of life right now, and we are desperate for some answers, which no doctor or hospital in the area seems to be able to provide.

We would appreciate any ideas or any guidance - names of facilities, names of diseases or disorders - anything that we could ask her gi doc about, or someone we could call and talk to.

Right now, though, we are desperate for any input. Her doctors and the hospitals seem to have given up on her, and they are at their wits end - as are we. We agree to use our sound judgement in pursuing any information or guidance provided, and we accept full responsibility for all outcomes.

Thank you for listening.

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  • Posted

    Details I forgot to mention: 

    Difficulty sleeping (sometimes going a day or more without sleep, averaging 3-4 hours a night) Randomly occurring hives/rashes (mostly hives on the legs and torso) Restless legs

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  • Posted

    Hm,

    I admire her to get through 5 hours 4 days a week at work, that's amazing considering her symptoms.

    I don't know where you are or which background.

    I just fire away what we have been through (despite the usual red, white blood counts, liver, pancreas, kidney parameters, CRP, VitB12, iron studies) with similar symptoms (but no diagnose or successful treatmen yet!)

    We are on the list to be tested for FMF (Familial Mediterranean fever).

    Have been tested for celiac (blood, genetic, biopsies), porphyria (urine), duodenal compression due to aortomesenteric distance and angle (MRI).

    ANA was positive, but was dismissed as unspecific.

    There are some autoimmune diseases that target GI tract. (we are dismissed to have that due to no diarrhea or malabsorbtion of food)

    We had 2 (unsuccessful) trials of medication for abdominal migraine.

    We are now on neuropathic pain (amitriptyline, pregabalin) trial and take melatonin in the evening. But when pain is high, one can be tired as mad and can't sleep.

    All the best!

     

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    • Posted

      PS:

      we also were screened for carcionid (urine HIAA)

      and will be for pheochromocytoma.

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    • Posted

      PS:

      we had a screen for carcinoid (urine HIAA) and cushing (lots of striae all of a sudden) too - urine cortisone (can rule out cushing or addison).

      We will be screened for pheochromocytoma

      and I will mention at next blood test, if complement C3 C4 was possible to be done and the enzyme C1esterase inhibitor (to make sure no herriditary angioedema was happening), late lyme disease is unfortunately not the forte in Australia where I am (and I and my mum both had borrelia positive typical erythema migrans bull's eye rash, infected in Europe and Australia)

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  • Posted

    Hi ajadams15

    Has your wife been tested for autoimmune disease? The rashes make me think there could be a connection to autoimmune disease. Go to your health provider and ask fir your wife to be tested for it......best wishes...

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    • Posted

      Do you know which one in particular?

      We had ANA (autonuclear antibodies) and does not indicate an autoimmune disease when positive. We did get ENA (a 6 extractable nuclear antigen antibodies), but because of negative result, was stopped right there.

      Do you have any in particular in mind? There are dozens of antibodies testable, but I can't get my doc to do any of those just because ENA was negative.

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