What is going on in my stomach or digestive tract

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If anyone had these issues please help.

By Sept. 2014 I was told I have Gastropresis. My doctor suggested for me to get the gastric sleeve to help the Gastropresis issues, the IBS, weight loss.

I had the gastric sleeve surgery Aug. 31st, 2015. Ever since I have had the worst stomach pain whenever I eat or drink anything. Even water.

By Jan. 2016 I had kidney stones cause I haven't gotten any fluids down daily.

By March 2016 I was so sick and in pain my surgeon told me to go in the hospital. They kept me for a week. They ran test on me. Found my gallbladder and gallstones were bad, and they repaired my hiatal hernia.

By July 2016. I had a follow thru test done. My hiatal hernia came back.

Bottom line. I still can't eat without all of this pain. I can only get down maybe 5-6 small bites of food.

I am always constipated and barley can eat or drink. My right side make a gurgle sound, it's disgusting. My bowel has such a foul ordor once I do go.

I can't go release my bowel without laxatives and Linzess. My stomach pain is spasms.

I have the worst hemmorriod protruding it's horrible.

I feel like my doctors have given up. They told me that I am a puzzle. WTF.

I finally will be at John Hopskins University Hospital in Baltimore this week.

I pray the find out what the crap is going on. I have had it.

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8 Replies

  • Posted

    Oh. I didn't mention they did take my gallbladder and gallstones out March 2016

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  • Posted

    Welcome to our world, same here,

    15yr old daughter and a 'puzzle' for almost 2 years, with gastroparesis, gastritis,  constipation, fevers, huge abdominal cramping pains, hardly restorative sleep.

    The only thing found (and would make sense) was hEDS so far (and dear me, it needed 10 docs until that was once known and also acknowledged).

    She is very mobile,

    please look at Beighton score - thumb at OT gave it away and started research of similar cases, ncbi a good source-,

    Her intestine loops have fallen down, are elongated

    (where are yours sitting and how looking? visceroptosis can plain physically have an impact on all our gut functions)

    and since connetive tissue sits everywhere, it seems in her case to be a gastrointestine manifestation of EDS. Hence if people cannot find a reason for gastroparesis, EDS to check as an underlaying reason jumps to mind.

    Also like you she has gastroparesis, which also makes sense, things don't work properly anymore - connective tissue is needed for muscles to function properly, even if brain, muscles are fully normal-.

    Our luck though: vomiting is only worse for a few weeks (but mind you with blood then) and settles again, always has good apettite, so weight loss not a problem, we don't need to consider tube feeding or botox injection into pylorus. (Operation would be last option.)

    You might want to look if you had any

    EDS traits as an underlaying extremely rare reason, that can be excluded quite easily.

    bad news: no treatment other than conservative if this was the underlaying cause. We take magnesium and Movicol to keep stool soft. All more conservative approach.

    But you can't get liquid in, so I am amazed you are not getting iv hydration on a regular basis! Also a conservative measure only, not treating underlaying cause, but really needed obviously and such bad secondary side effects from not being hydrated!

    Can't believe you don't get every few days hooked up at local doc to some iv hydration.

    ....

    Another rare thought: SMA syndrome. Have they looked in an imaging specifically (MRI, ultrasound), if the mesenteric artery was squeezing the duodenum, so that again physically the stomach couldn't empty well? The good news: this can be treated and corrected!

    Last rare thought: Autoimmune gastrointestine dismotilities, like e.g. Autoimmune Autonomic Ganglionopathy (AAG) or AGID, there are autoimmune diseases influencing the gut motility and do not have to be connected to cancer and often can just effect gastrointestine, and I am not talking Lupus or Sjörgren. but aag and agid. Those blood tests are e.g. not done in Australia where I am, so frustrated, but in USA (Mayo - you will find them when searching internet if symptoms would fit). Again not much that can be done, but trials with immunglobulin.

    ALL all the best!

    Yes, one is given up quickly if not a straight forward case. 

    Take care and best of luck to get help! Hopefully reason can be found AND treated!!!

    Take care!

    Keeping fingers crossed!

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    • Posted

      or at least a tube to bypass stomach to get hydration/food in. You need to get hydrated and nutrition!

      I read the banana stem suggestion, well, yes, but if you can't keep liquids or food down, it's not going to get in.

      We also take LGG probiotic (L.rhamnosus), but again, you need to be able to swallow this powder/capsule and stay down. If you vomit so much, this needs really to be addressed first since there will be so many side effects added from simply that condition.

      All the best!

      Take care!

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  • Posted

    Hey Janay,

    As the doctors are given up, you must see a genuine experienced naturopath. I am sure you have problem with indigestion which is converting in to stones due to constipation. this can be cured in 2 months of natural medication with strict diet.

    you must not agree to remove the organs so easily sad

    For kidney stones, you drink the banana stem juice for a week, that will remove the stones and you can become normal.

    See banana stem benefits in web, these are indian sidha treatments.

    All the best.

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  • Posted

    I have been getting tested on and off for the past two months at John Hopskins University Hospital in Baltimore. Thank God I finally have a diagnosis for all my issues with my digestion. I have 4 problems. 

    My doctor, called me on my way home Friday to give me the consult over the phone. 

    This is what she said about my swallow test.

    1. She said I have a Jackhammer Esophagus. This explains why I can't get much down to eat. She stated my esophagus is very narrow. Cause severe Acid Reflux and spasms after eating. I sleep in a supine position so I dont choke in my sleep. When I don't having this feeling then I do lay down. The meaning is below. 

    A Jackhammer Esophagus, which means:

    Jackhammer esophagus, or hypercontractile peristalsis, is an esophageal motility disorder that is characterized by esophageal spasms that involve all or most of the muscles of the esophagus. The spasms are so intense and tend to last for a long time, making the name of the disorder, jackhammer esophagus.

    The cause of an jackhammer esophagus, is triggered by GERD.

    Symptoms of jackhammer esophagus range in severity and overlap with many other disorders of the esophagus including GERD,eosinophilic esophagitis, and achalasia.

    Aside from esophageal spasms, other symptoms may include:

    chest painfeeling like there is a lump in your throatdifficulty swallowingregurgitationheartburn

    The chest pain that is usually associated with jackhammer esophagus can be severe and cause you to feel as though you are having a heart attack. It may radiate to your back.

    **I have all of the above symptoms, all this time not knowing any of this**

    2. Tumor/lesion in my Pancreas 

    3. A hiatal hernia.

    Since the pancreas is part of the digestion system, this does explain why I can't eat without so much pain. This pain radiates to my back pain as well. 

    Note: The doctor wants me back at John Hopskins University Hospital soon for another endoscopy, this time she will inject my esophagus with botox for my swallowing issues and in that same procedure she will do a biopsy on my Pancreas, so they will know more about the type of tumor/lesion I have.

    The Pancreas issue, under my left rib cage feels swollen, it also feels like is throbbing, and spasms all the time. That pain gets worse especially when I eat. The best way to describe it. A glass being filled and when it's too much in the glass it's constant pain that don't go away right away. It will take hours for the food to move so the pain will calm down. All with a hiatal hernia. Terrible pain.

    4. Anal Manometry test. 

    This is a anal test to find what is the holding up the passing of my bowels. If I don't take meds I don't go at all. This is also a cause of pain. Constipation.

    Note: I failed this test also. In the test the nurse inflated a balloon inside me and my muscles wouldn't allow me to push the balloon out. 

    My results state my nerve in my pelvis is not working and I was advised to get physical therapy to see if that nerve would wake up. So with constant constipation, and nausea, throwing up this doesn't help either. 

    So from eating all the way to pass my bowels it is major issues. In the meantime I am starving inside, always hungry, and in constant pain with no end. Which causes me not wanting to eat to avoid all issues. Very frustrating and exhausting, no sleep due to all the pain. The back pain and constipation both don't help either. Since my digestive system is very slow it is even harder to take meds for pain. At times that results me to throwing up since my body rejects things. This all is a Wow to me. Staying in prayers. 

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    • Posted

      Thank you so so much for your update (as so many just post a question, and never ever follow up and people in same boat not knowing what actually was the problem once found)

      Thank you so much!

      In the meantime:

      Did you get special food (which I can't mention a brand, post will deleted) that is absorbed without digestion?

      Are you allowed to trial taking pancreatic enzymes?

      Also all the findings do not explain WHY you got those problems, is there an antibody behind it blocking nerves? 

      I have heard of botox into the pylorus in gastroparesis,

      so trying it for jackhammer oesophagus makes sense.

      I wish you all all the best, that the treatment will work and the pancreas be ok.

      Yes, keep thinking of you

      and best best of luck!!

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