Recurring Gastric problem....

I am 23 years old and at the age of 19 was rushed into hospital with horrendous sickness and stomach pain. This continued for 18 months. I was misdiagnosed with crohn's disease and given huge amounts of seroids and pain medication. After a diagnostic laparoscopy it appeared iI had a cercenoid tumour in my apendix measuring about 1 cm and adhesions sticking my bowel togther. These were both removed and I began to make a speady recovery. Over the past few months my symptoms have returned, with a awful burning sensation in main stomach, sickness, consitation and low blood pressure. I also get terrible hot flushes of pain. I was once again taken into hospital in Bristol, my xray showed I was terribly compacted on both right and left sides; so I was and given ememas and 10 sachets of movicol to release my bowel. My CT scan showed no obvious sign of bowel problems but did show a small cyst on my right ovary. I am having problems now with eating, it is painful to eat and very painful, almost burning sensation after drinking alcohol. I do not want to go through another several years of being misdiagnosed, please help me!  

[michell221]

Hi, I am so sorry to hear of all your pain :(  Below is my opinion. I am not a medical dr but have had my share of GI troubles and have researched a lot of different things.   I think this below is one of the main things I would be looking into if I had your symptoms.  A lot of  other things things can cause your symptoms but you have had carcinoid before.

  It sounds like you could possibly have carcinoid syndrome and you could possibly have a carcinoid tumor on your ovary or somewhere else. You mentioned you had a carcinoid tumor before.  They should be following up on you periodically.     The syndrome is brought on by the tumors.  It only happens to a small percent of people with carcinoid tumors but you mentioned the flushing and pain so that makes me think of this.  

Have your drs even mentioned this to you?  If not I am shocked! I would be finding a new Dr. ASAP that specializes in this and will be following up on you reguarly.

Carcinoid syndrome can have these symptoms below ( and others)  and the symptoms can also be brought on by alcohol, certain foods , physical exertion etc.

Abdominal pain that comes and goes
Bright red flushing of the face
Diarrhea (may be explosive and severe) or constipation
Heart palpitations
Low blood pressure
Wheezing



Tests to diagnose this
5HIAA - This is a Urine test.  You will be given a jug to collect urine for 24 hrs and this should be done exactly per instructions.  I believe there are certain foods to avoid before this test .  Only about 50% accurate so other tests should be done as well.


There is also a test called blood serotonin and blood chromogranin A and
substance P and many others including scans.

Google carcinoid foundation to check out info and also google carcinoid and carcinoid syndrome support sites.  Try to find a recommended dr in your area to test you and see what is going on since you have had this before.  I found a list by googling carcinoid doctor database.


Please let me know how you are doing and if you are able to find a dr.  I am hoping for the best and will pray you get better soon.