Discussions By Condition: I cannot get a diagnosis.

a rainbow of pain above the bellybutton

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • November 11, 2010
  • 08:00 PM

I am 35 yrs old. At 19 I had my gall bladder and appendix removed. At 27 I had a r/y gastric bypass and lost 210lbs. I currently weigh 130lbs and have very little extra skin. For the past 4 years I have suffered with severe stomach pain that is there pretty much all the time. I have spent days in the hospital and have had emergency room visits too numerous to count. The pain worsens while eating and remains very very painful for about 2-3 hours after. But generally I struggle with this pain night and day. I have had every test under the sun... upper and lower endoscopy, exploratory surgery where they ended up breaking 9 adhesions. (Super painful!) Anyway... I'm sick of the pain! I have always had a painful stomach... when I was a child I remember having "stomach aches" but after my bypass I felt great for four years! I then had two internal hernia repairs in an attempt to get to the cause of my pain but nothing yet. I have a family history of ulcerative colitis (my mom) and spastic colon (mom and grandma) but I have never been diagnosed with either of those. I currently see a pain doctor who has me on fentanyl patches (50mcg) and dilaudid (2mg tablets) 4x a day. The patches keep me from screaming during the day and the tablets allow me to somewhat function after I try to eat. I'm hoping maybe that someone out there has some suggestions. All of my bloodwork is good other than I am anemic and I am usually slightly dehydrated. I am dilligent about taking my vitamins and minerals. I also take 10,000iu of Vitamin D, 2x the daily required calcium,and lots of omega 3 fatty acids.I make sure to get enough protein and carbs but I have trouble keeping weight off. At one time they thought that I had porphyria which made sense to me. I had one er doc who treated me as such, administering glucose by iv and it immediately helped the pain. I had one test for porphyria come back positive but all subsequent tests have come back negative. (they did the 24hr urine collection test.) If you see this and something clicks for you, please let me know. Thank you and God Bless!

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