My son is 24 and has been having the same issue for the past year. Repeated visits to the ER, uncontrollable vomiting, low potasium and severe abdominal pain. The only thing that helps his pain is sitting in a hot tub of water. The ER stopped seeing him because they think it is self induced and think he just wants drugs. I have seen his attacks and the only thing that the hospital gives him is narcotics. He doesn't want the narcotics, just the pain to go away. I recently tried gluten free items but he hasn't been able to follow it since he is now homeless. His grandmother kicked him out because she thinks the ER is right since nobody knows what is wrong with him. I took him in so he wouldn't be in the street with this issue. He had to drop out of school due to this illness.
We have had endoscopy, GB ultrasound, colonoscopy, bloodwork, urine tests, h-plorsi test and everything comes back normal. He has been with me now for a month and has been doing better until tonight. Another episode. I am afraid to take him to the ER because I know they will just send us home, but I also don't want his heart to stop which is what the last visit told us could happen. If anyone has other suggestions please let me know. Maybe mayo clinic will be our next step.
I lost faith in hospitals and doctors because my sister had sarcoidosis. For an entire year she was in pain and didn't know what was wrong until three months before she passed away. They kept giving her medicine for symptoms but never diagnosed her. After a visit to mayo clinic to find out what was wrong, it was too late.
Look up Porphyria(not sure if I spelled it right) its super rare but its worth a shot. To test for it you do a 24 hour urine test.
I wanted to mention that I have been a vegetarian (no fish or chicken) since I was about 6 years old. Therefore, I don't know if cutting out the sausage and bacon would help prevent an attack. I am not sure if some of us have simply had an attack and coincidentally eaten a certain food, which made us falsely believe that the food triggered the attack or not. I know that once I had eaten broccoli for dinner. About six hours later, I vomited completely undigested broccoli. Therefore, I thought maybe I was having trouble digesting fiber or something. I also had an attack after eating vegetable tempura and have not eaten it since. That time, I thought maybe it was the grease…
Hello my name is Stacey.
I have gastroparisis, I just found out in April- my body can not digest food like a normal person.
I have lost alot of weight down to 85 lbs and have been in the hospital three time this year and also had a feeding tube. I went to Temple Universary in Philadelphia they tried me on all kinds of medications none help. In December they put a gastric stimulator in my tummy has not help yet they told me it will take some time. I have not been able to work between the pain, vomiting and nausea. I am not diabetic they do not know why I have it. I do have success with keeping down liquids but only drink a some amount at time. Baby food helped me also. I also have coloitis, and hashimoto's disease which do not help with everything else. I have no energy and am very weak. My blood pressure is also very low. Keep drinking that is the most important thing.
Stacey
Patty,
When some folks have their GB removed they
are faced with more problems. If yourson can follow a low fat diet (No fried foods at all Bacon and Sausage are the worst) he may see a big change. If constaipation becomes a problem start him on daily fiber tablets. I know many have and continue to have acute pancreatitis attacks after the GB is removed.
You may find info at pancreatitis group on yahoo.
I am going through the same situation again. I have these same symptoms minus the neck pain. This reoccured after 15 years of dormancy. 15 years ago (30 yrs old) I started this nightmare. Several tests were ran and nothing could be found. The Internest I was seeing actually went back to school after trying to treat me. I had a severe attack while 5 months pregnant and was hospitalize for 5 days. They thought it to be my gall blatter. They put me on a low fat diet, ( fat content below 30%) and that helped until my gall blatter was removed. For 15 years no problems until last week a full blown attack! I realized that it was never my gall batter. I am back in the process but in the meantime I am eatting a low fat diet. I do know that the trigger that started it 15 years ago and this last week was scrambled eggs. I was then and am now under a prolonged state of stress and have a bmi of 47. A heavy repeated signing and leaning forward helps a little with the pain.
Angela
Dear Patty,
I was very surprised to read your post, because I have had a VERY similar experience as your son, except I don’t recall any severe neck pain. I am a 35-year-old female, and my first “attack” was when I was 19 or 20.
I have experienced this unknown hell approximately 15-20 times over the years. I actually went for about ten years with no symptoms, or very minimal. By minimal, I mean I may have had some feelings of slowed digestion, abdominal swelling, a funny taste in my mouth, acid stomach, no hunger/fullness for extended periods of time…
Like your son, I have had infinite tests: ultrasound, upper and lower GI, Crohn’s test, gynecological exams, etc. All or the tests were inconclusive. However, I was usually given some generic answer after much persistence. For example, I was diagnosed with gastroenteritis, pelvic inflammatory disease, an ovarian cyst…
After approximately ten years with no major symptoms, I was again faced with this unknown torture in 2004. This time, I had a much different experience with the doctors. They seemed as though they really wanted to get to the bottom of it. I had a CT scan and was informed that I had moderate Ascites. I was given a few anti-spasm pills by a gastroenterologist for the cramps. He did not want me to over-use the pills, as it may mask symptoms. He also told me that the next step would be to biopsy the fluid upon my next episode.
I have yet to have another severe bout with this illness; however, I have had several periods of moderate discomfort when I had the feeling that the sickness was coming soon.
My symptoms were treated with intravenous pain medication and anti-nausea medication. I have been severely dehydrated several times, which is hell in itself. But like your son, my symptoms normally stop within 24 hours or so, although it may take a week or so to feel like my self again and be able to eat normally. I actually had an episode once during a blizzard, and I was living in the mountains. I had to try suffer through it, and my mother put drops of water in my mouth each time I passed out from the pain or after vomiting. I realized then that I would only last about 24 hours even without pain meds.
In addition, the last time I was hospitalized, my blood pressure dropped dangerously low. I could not even raise my head without fainting. I had to stay perfectly flat. With this also came horrible flashes of heat and a sinking/draining feeling.
I hope that you will see this post, or someone who has had a similar experience will, and will reply. I would love to compare notes.
Melissa
ask the doctors to check him for chrons disease