please give me your thoughts... i am a 20 yr old female looking for a diagnosis... please help
heres the run down:
October: i went to the emergency room with abdominal pain, nausea, fever, shaking, dizziness, diarrhea and headaches. they ran a ct scan and some blood tests but everything was negative. my liver enzymes were low but the doctor told me that that means nothing. they gave me zofran and toradol and said "you're not an emergency, go home" so i did. when the medication wore off, i felt the same as i did when i went in. spent the entire night sitting because laying down made me nausous and moving made the pain worse.
two days later i went to my gp. She went to palpate my abdomen and i was in excruciating pain. she then sent me back to the ER to get another cat scan... the cat scan and blood tests can back negative again. and once again they gave me zofran and toradol, and bentil (an antispasmodic) and sent me home saying "theres no reason for your pain" i called the GI from the ER after the weekend and told him i'd been having 20-30 episodes of green diarrhea all weekend and he said "thats normal" so i continued to feel this way for three weeks. now adding fatigue, acne flair ups, and just dull dry skin to the mess. I also had varrying colored diarrhea from green, orange, red, baige, and even one day blue. my food stopped digesting. It came out looking like it did when it went in. i started drinking pedialyte because after having diarrhea for 3 weeks straight i must have been slightly out of balance with my electrolyres. i called the GI again and told him this three weeks after the original call and once again he told me "thats normal. since you still have pain go see your gynecologist."
November: i went to see my gynecologist. she ordered two US some blood tests and did an exam. she found nothing. So i found a new GI and went in to see him. Instead of telling me "you're normal, you're stressed, its all in your head." he told me "well it looks like something isnt right. lets see what we can do" so he ordered a colonoscopy, endoscopy, HIDA scan, abdominal US, and some other tests. all negative. while this is happening. my appetite has severly decreased. i can eat two bites of a meal then wont touch anything for atleast 6 hrs. the nausea is frustrating because i constantly feel like i'm about to vommit (sometimes i even dry heave) but nothing ever comes up. the nausea is followed by the shaking and pain.
December: My GI decides to put me on Creon (pancreatic enzymes). within a week i'm eating a full size meal and i can now directly link nausea with certain foods. after altering my diet to a strict low fat, dairy free, and wheat free diet i can eat meals and experience little to no nausea or pain. however being a dorming college student makes this very difficult to follow. My GI says that i have enzymatic pancreatic insufficiency. He says its not a disease but a result of a disease or presentation of a disease. he then procedes to test for cystic fibrosis and alpha 1 antitrypsin. both negative. after a week on Creon my stool has FINALLY returned to a normal color and consistency. wooohooo!
January: i now have two MDs (my GP and my GI) plus three NP (the ones at school) filled in on everything. all are completely baffled and have basically given up. i am adjusting to my new diet with occasional mess ups (i am a 20 yr old girl after all... must have ice cream) these mess ups leave me feeling much like i did when i first went to the ER except now i know not to go because they wont do anything for me. I just bunker down for the night with a bathroom near by and stick it out.
February: i'm starting to feel very fatigued all day every day. i almost fell asleep driving after 14 hrs of sleep. i'm constantly cold, which is not normal for me. 78 degrees in our room and i'm still wrapped in my blankets. my roommate has commented that i should get my iron checked but i'm sure theyll find nothing like always. i've been mainly eating white pastas, white breads, and rice. vegetables must be cooked, no broccoli, no tomatoes. yet i've lost 8 lb total this month.
March: i've lost 3 more lb and its mid march. in early march i get on a plane. as the plane takes off i start to feel a stabbing pain in my upper left quadrant. it quickly increases to about an 8/10 or 9/10 sharp stabbing pain originating in my left upper quadrant and radiating in all directions even through to my posterior ribs. it gets to the point where i cant even brush my abdomen without crying. i cant move. this last for 3 hrs. i was almost positive that i'd spend the night in the ER once again. however, just after the 3 hrs the pain begins to subside. I hear the "we have begun to descend into the NY area" announcement. by the time we land the stabbing pain is gone and all that is left is a dull sore ache. This baffles me and frightens me. when i tell the NPs at school they look at my like i have three heads and a green beard.. so i called my GI and i have an appt but i was wondering if anyone has any thoughts on my issues?
to top it all off, i constantly try to google enzymatic pancreatic insufficiency so i can learn about it... and i just want to say I AM NOT A DOG! all the information is about dogs and cats. so i have no source of legit information about my problems.
so far they found that i have hoshimoto's which is an autoimmune thyroid disorder, and PCOS which effects glucose, insulin, and the reproductive system. Nothing as far as my gastro issues go. I am having a repeat colonoscopy/egd. then a small capsule endoscopy to test for small bowel crones. After that my doctor plans to work me up for lupus. again. I fear this is never going to be diagnosed.
Thanks for answering..I'll let you know if
Ii find out anything! Already had endo and colonoscopy...also CTand MRI. Everything okay. (Except how I feel!!) I think whats left is to look a little closer at the pancreas. Stomach hurts 24/7 with nausea, crazy bowels and feeling full all the time! Blood work shows elevated wbc and low Lipase enzymes.Had this for six weeks! Calling Doc again! Wish me luck!
Good Luck! pretty much same stuff here. I've had this for a year now. my diet is basically white rice, pasta, potatoes, fish, chicken, and turkey. I've added baby food- the organic fruits are fairly easy on my stomach and are pretty much tolerated. I use Ella's kitchen and Baby Gourmet and have found that I can get appropriate nutrients from them. Make sure you take vitamins if you have limited your diet. I know my B12 is already showing signs of a deficiency. if you havent already, you may want to get tested for cystic fibrosis and alpha 1 antitripsin.
stay in touch. hopefully its an easy fix once they find out what it is. Also try ginger gums, teas, and candies to help with nausea. I'd be lost without my ginger gum and tea.