Chronic stomach pain with a pression sensation

Posted by miliangy @miliangy, Sat, Sep 7 9:26pm

Hi! I’m an 18 years old girl. I’ve been diagnosed with GERD when I was eleven. I have a very severe reflux along with severe nausea, no vomiting since a long time though, cough (sometimes severe), snore, acid taste in the mouth, and muscle pain (sometimes severe too). I’ve been visiting gastroenterologists since eleven. I’ve had multiple hospitalizations. The reflux sometimes cause cough exacerbation that leads to hospitalizations. When I turn 16 my gastroenterologist made me a gastrin level lab which results were high. He reapeted this test like four times, and in every single one came out high. Then I went under a whole bunch of studies: MRI, CT Scan, Sonograms, Octreoscan. In almost all of them, a small lesion appears on the pancreas, which they think can be a gastrinoma. Their not sure though, ‘cause they couldn’t do a biopsy because it’s too little. I’ve been taking Baclofen 10mg, Prilosec 20mg, Prilosec 40mg, Zantac 300mg, prescribed by my GI, as for seven years. Among all of this, since I was eleven, more or less, that was when all this started, I feel a pressure on the upper part of my belly button. And I feel immense relief when I pull the top of my belly button. I just wish that someone can help me out to figure what is happening to me, since I’m very desperate. This last week, at least, I’ve been having moderate to severe stomach pain right after eating. I’m just scare that doctors can’t really figure out what I have and keep getting worse. I just wish someone relate to my symptoms and help me with this.

Thanks in advance,

@miliangy First, let me welcome you to Connect. I see that you did post within a different group and I hope you can get some answers from one of your postings. I have nothing to help you with, none of this is familiar to me at all. I do have Barrett's Esophagus but your problems are totally different yet both have GERD components. Oddly, I never actually felt GERD but apparently it generally precedes Barrett's.
I just want you to know that your post is being read and I hope that someone who reads it will know something that can help to lead you in the right direction.

My only comment is, are the doctors you are seeing associated with a major medical center? I had non-alcoholic cirrhosis and went undiagnosed for almost a year and half here in the Manchester area of southern NH. When I finally did get it diagnosed I had to go to Boston for treatment and an eventual liver transplant. If you have not been to a major medical center, preferably a teaching hospital — my hospital is Mass General in Boston — then please go even if it is inconvenient. They see so much more than the doctors do in smaller areas. I now know that if I ever have a problem again that is not immediately diagnosed up here, I will be headed down the highway to Boston. I pretty much go to Boston now for everything except my PCP.
If you do get an appointment with a doctor at a major medical center I hope you will post about it. The fact that you have not had responses really is indicative of the rarity of your problem.
JK

REPLY
@contentandwell

@miliangy First, let me welcome you to Connect. I see that you did post within a different group and I hope you can get some answers from one of your postings. I have nothing to help you with, none of this is familiar to me at all. I do have Barrett's Esophagus but your problems are totally different yet both have GERD components. Oddly, I never actually felt GERD but apparently it generally precedes Barrett's.
I just want you to know that your post is being read and I hope that someone who reads it will know something that can help to lead you in the right direction.

My only comment is, are the doctors you are seeing associated with a major medical center? I had non-alcoholic cirrhosis and went undiagnosed for almost a year and half here in the Manchester area of southern NH. When I finally did get it diagnosed I had to go to Boston for treatment and an eventual liver transplant. If you have not been to a major medical center, preferably a teaching hospital — my hospital is Mass General in Boston — then please go even if it is inconvenient. They see so much more than the doctors do in smaller areas. I now know that if I ever have a problem again that is not immediately diagnosed up here, I will be headed down the highway to Boston. I pretty much go to Boston now for everything except my PCP.
If you do get an appointment with a doctor at a major medical center I hope you will post about it. The fact that you have not had responses really is indicative of the rarity of your problem.
JK

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Thanks for reading my post! It really means a lot, I really wish someone can help me. I’m from Puerto Rico, but here there aren’t a lot of pediatric gastroenterologists. I have attended with every single one, and with whom I am attending now was the only one that found all this, the others told me that what I have is emotional. Yet, I’m seriously considering seeing doctors associated with a major medical center. I hope you get well, with the Barrete’s Esophagus thing. I’m really glad you found the help that you needed in Boston, I hope you stay well.
Thank you for your response.

P.D. : Along with all of the symptoms above I have abdominal swelling and blood in the beams (this last one not so frequently).

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