I have had chronic severe stomach pain for more than 14 years, need advice

[krissi88]

So, I have had chronic severe/debilitating stomach pain for a little over 14 years, with no answers as to what is going on with me.

The pain is always sudden and with little to no warning, and I have never found anything that aggravates or triggers it. The pain starts in the middle of my back (specifically middle of my spine) and feels as though I am being hit with a sledge hammer. That pain radiates around the left side of my upper abdomen and through my stomach (organ). I equate the pain and radiation to when the alien rips out of the man's stomach in the movie, Alien (if you've seen it). It feels as though something is trying to rip right through my body. The pain lasts for 12-48 hours, prevents sleep/lying down, and causes vomiting (not nausea) 4-5 times during the episode.

When I vomit, I purge all of the contents of every meal I've eaten during the day. Because the episodes typically begin in the evening/middle of the night - I nearly always vomit breakfast, lunch, and dinner from the day - as if it barely digested and has sat in my stomach the entire day waiting for that moment. Upon throwing up, the stomach pain immediately disappears, but the back pain remains until and up to a day later.

The pain is so severe that I cannot lie down, sitting hurts, doing anything hurts. I cannot sleep when the attacks come on and even after purging my stomach, I am miserable the next day or so to the point that I can barely get up out of bed due to exhaustion.

There are zero foods that I've found that bring it on and it happens even on a perceived empty stomach. I have even thrown up contents from the day prior.

I have ZERO indigestion, heartburn, acid reflux, etc (...) accompanying the pain.

First episode was when I was 14 during a shopping trip. The pain was sudden, immediately, and so immensely painful that I was shaking, unable to walk, and had to use a wheelchair to get out of the store. The pain lasted the longest  ever in the 14 years - lasting an entire week. I had not eaten anything out of ordinary that day.

I had enough episodes (one a month) that my mom took me at 16 to see a GI, per my pediatrician. After an appointment where I was told I probably had PCOS the entire time, the GI agreed to do a barium scan just to check. Although, he was certain I didn't have a GI problem and had PCOS because "nothing can radiate through the left side of your abdomen, there isn't anything there to cause these problems." (Yeah, okay...)

He never returned the results to my pediatrician and refused to take my mom's phone calls, so we never found out what the results were. For what it's worth, I do NOT have PCOS. I have been tested and considering I am not infertile, have little to no body hair, and have zero symptoms... yeah, I didn't have PCOS. He just saw a chubby teenager and assumed it was PCOS.

When I was 19, I had another severe attack that caused me to go to the hospital. I was given a grasshopper cocktail, a shot of vicodin, and sent on my way. I was told I had GERD. I know the symptoms of GERD, I've seen GERD affect others, and I do not have those symptoms and I've never met someone with GERD who has the symptoms I have. GERD is typically just a blanket statement some medical professionals slap on a person with stomach problems... if I had GERD, I'd have heartburn, indigestion, reflux, and/or some kind of acid problem.

I have taken proton pump inhibitors and antacids, to no avail. No daily med helps and no fast-acting med helps either, because ultimately there is no acid. I do notice that if I cannot throw up to relieve the pain, I will take some maalox and immediately I throw up (so that's the only way it helps).

Everytime I bring it up, I just get told it's GERD. Nobody bothers investigating and I get the same story of, "There isn't anything on the left side of your body, blah blah blah!" The problem is they're focusing on it radiating through the left and not focusing on the mid-back and stomach pain. Remote pain and radiating pain can happen anywhere in the body given the right situations.

I don't know if I should just see a GI (I don't believe I need a referral) or what to say to my PCP to get them to take me seriously... This problem is ruining my life!  

This is now happening, 14 years later, every to every other day. If I get a break, it's maybe for 1-2 (non-consecutive) days. It keeps me from enjoying life, going out of the house, cleaning, cooking, eating at times, and spending time with my children. I'm so tired of telling doctors and being brushed off and not listened to like I'm some kind of crazy person.

What can I do, what should I do? Who should I seek out for help or what should I say when addressing this issue to hopefully get them to listen to me and run some kind of test to find out what this is?

Does anyone maybe have an idea of what it might be? I have a list of things I have always thought it could be, but without tests I don't know.

TIA

[flyinlynn]

You should see a doctor probably a gastroenterologist. Have you had an upper GI where you drink barium and they do an x ray? Or have you had an upper endoscopy where they sedate you and insert a camera down your throat to examine your esophagus and stomach?

[krissi88]

I had a barium screening (barium plus x ray) when I was a teenager (16), but the GI who did it never gave my pediatrician at the time the results, refused our phone calls, and also refused my pediatrician's calls at the time. So, we have no idea what the results were.