So for the last 9 years I have been suffering from some disease.
The symptoms basically are extreme stomach pain and nausea. However, the pain is the most significant symptom. By the time vomit comes into play I have already been in pain for hours.
When I first had this, it would flare up EVERY morning after a BM. And I mean EVERY morning. Even if I didnt have a BM. Usually I would lay in my bed in pain for about 2 - 3 hours and then be okay enoough to go about my day...that is if I watched what I ate...
Just like waking up, everytime I ate I would get stomach pains and throw up. It got to the point to where I wouldnt go out to eat with ANYONE. A restaurant meal is a promise if pain and nausea, if not then, it would just mean the next morning would be worse.
With these flare ups, the pain would reach the 10s (out of 10) with occasional mild flare ups in the 5's after a light lunch or so.
I have never vomitted blood (unless I had been puking for more than 15 hours.) I have never had bloody stools. My stools are not abnormal. No D, sometimes mild C, but never anything that screamed "Im a symptom!"
Over the last 9 years I would say that I average 4 visits to the ER a year. (thats average..means one year I went maybe twice and a few years before that maybe 10!)
I have seen countless doctors and at least 3 G.I. docs. One of which said I had Chrons (after exhausting all other options and guesses.) He came to this conclusion when he found something in my biopsy when he did a colonoscopy.
Other than that, there are no other signs of chrons. Upper scope, lower scope, emptying study, CAT scans, MRis...even a sonogram.
I have tried just about everything my un-insured self can afford save for Remicade...but heres the thing...
I went to the ER with a flare up, told the ER doctor that my G.I. said I had chrons. So he said he would do a colonoscopy and help me get on Remicade....
After his scope, he came back and said I didnt have chrons or it was in remission and that he could not...would not put me on Remicade. As he is telling me "youre in remission" im trying not to puke and holding in the moaning and groaning from the pain.....this is remission?
So after awhile they put me on pain meds. Oxycotnin. My tolerance was too high for my doc to remain comfortable (too high = lowest dosage possible:confused:) even though it was the ONE thing over 7 years that they have tried that worked...and boy do I mean it worked! I could finally wake up in the AM without pain, I could finally eat out without pain or nausea! Life was getting back to normal.....but that was just the daily pains.
This doc gave me nothing for breakthru pain, nor would acknowledge that I even had breakthru pain. So when I would get real bad flare ups, I would take more than my prescription said, so I ran out early.
After only 1 month on pain meds that absolutlely worked I was taken off. Now not only am I going through these flare ups, but im dealing with withdrawls as well.
I have ended up going to a methadone clinic and telling them I was addicted to oxycontnin(hydrocodone) and have been put on methadone. The pain releiving effects of methadone do work pretty well, however I dont want this to be the chronic pain reliever of my life. It has worked however. I am no longer nauseous or feeling major pains in the morning and I can eat normal again.
Heres another kicker tho. Since the last ER doc said my chrons was in remission when I go to the ER they say I dont have chrons. On top of that since I was put on opiate pain killers 2 years ago, everytime I go to the ER they imply that im lying and simply going through withdrawls....even though I havent missed a dose, and the symptoms are exactly the same as the 6 or so years Ive been coming to the ER with this mystery illness....
A month ago I went to the ER and they told me I was going through withdrawls and kicked me out onto the streets at 3am in extrucuating pain, vomitting all over myself.
Im so afraid of going to the ER now, that my last flare up (two days ago) lasted 26 hours before I finally gave up and dialed 911. I asked them to take me to another hospital (nearest other ER is 40 minutes away) so that they could medicate me in the ambulance since at the ER they know my face and kick me out right away....
This flare up hurt so bad that I kept biting my fingers, after 26 hours my fingers are shredded with bloodblisters, my mouth is cut up from chewing on a plactic cup all night....
Oh yes and this caught my attention recently....it seems during a flare up I have an enormous craving to chew ice chips. Its incredibly releiving, but I end up cutting my mouth open....
...ugh...I know I should have put this under the section that says "tell us your story" or whatever...I just couldnt stop typing about this.
I just really want to find someone who has gone through this, knows what im going through, and has better advice than just "take deep breaths"......
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