midgut carcinoid tumor

Anyone out there know anyone who has had one?

[Jaybay]

My father died of adenocarcinoma of the gallbladder, which would be "mid gut" in layman's terms.  What's going on?

[prettyprettypumpkin]

Well I have been investigated for so many different things and now my doctor is looking into a carcinoid tumour. My primary symptom has been chronic diarrhea since I was about 12. I am now 22. It happens when I eat. But can occur at anytime really. As I have gotten older things have gotten much worse. I have diarrhea 4-20 times a day, I wake up often in the night having to go, a few times I haven't made it and woke up in a big disgusting mess. I have been diagnosed with polycystic ovarian syndrome. I have to take B12 injections because of malabsorbtion problems. I have had kidney stones. I have what appears to be a large mass on the right side of my abdomen/behind my belly button. I can't eat without becoming sick. I have had several intermittent bowel obstructions. I have had several ultrasounds, colonoscopies, and a CT scan all of which keep coming back normal despite all my other problems. I now have lesions on my skin, and my lymphnodes in my groin are causing me pain. Also my uterus is being pushed down and back to the left. I can feel that something is pushing it. I also have a fair amount of pressure on my right side lower rib cage. I can't stand up without the urge to urinate and defecate. Its ruining my life. I hate it. No one will take me seriously. I have to wake up several times a night to change my pyjamas, bedsheets, and comforter because they are usually drenched in sweat.My hormones are a mess. I have had hot flashes since I was 16. I have been accused of taking laxatives and doing this to myself. Please help me. Its been 10 years of my life and I can't go on with this much longer.

[Jaybay]

I read your post on the doc's board, and my heart really goes out to you.  In the meantime, have you tried going gluten-free with your diet?  Celiac disease causes all kinds of malabsorbtion problems and crazy symptoms not even related to D.  For instance, if your body can't use B vitamins, you can get odd numbness in the extremeties, and even seizures in some people.  

You'll have to get rid of wheat, barley, rye and oats and give it at least 4 to 6 weeks to see what happens - just depends on how much damage has already happened in the small intestine.  People with celiac disease have an immune response to gluten that causes damage to the little villi in your small intestine - hence the malabsorbtion problems and the inability of your body to properly use vitamins and other nutrients.

Have you ever had an exploratory laparoscopy?  Seems to me like that is a reasonable step after all the testing you've had.

[prettyprettypumpkin]

no. exploratory laproscopy has been done. I'm in canada and they aren't too keen on doing that sort of stuff I don't think, unless there are results to suggest that they are needed. Aside from my life being destroyed.. I am just so sick of hearing doctors say there is nothing wrong with me when I KNOW there is. My parents said they would take me to a private clinic in the states. Seattle is the closest major city. I need to find information about someplace I could go for that. Any help would be appreciated.

[Jaybay]

I can't imagine the horror your life must be right now.  Yes, medical care in the US can be expensive when one has no insurance, but at least we have the ability to fire a bad doc and find another one.  How awful!  I live in Texas and can't recommend any clinics in Seattle, but perhaps you could make a new post here asking for anyone from that area for info?

In the meantime, why not try the gluten-free diet and see what happens?  It won't make things worse, and just might help.  Here's a link with some solid easy-to-understand info on celiac disease:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm

From what you've written, it appears you've been tackling these problems from a purely GI angle.  Since you mentioned hormonal issues, hot flashes, etc., have you consulted a gynecologist or even a reproductive endochrinologist?  Something else to consider anyway, and you're way past the time for these docs to start "thinking outside the box."  

Please don't ever give up trying to find an answer.  You are right: something is wrong, and the docs just haven't figured it out yet.  Every abdominal problem I ever had (and still have) has never, and I mean NEVER showed up on any test.  Gallbladder, appendix, severe endometriosis, uterine fibroids, and tons of scar tissue never appeared on the radar of any MRI, CT scan, X-ray, or ultrasound.  Every last time I had to fight for a diagnostic laparoscopy that turned out to be the cure.  My surgeon just sighs and laughs when I have to see him these days, because I've been vindicated every time I had to argue with him about the need for surgery.  I have so much respect for that man because he is one of the few docs I've ever known who actually listens to his patients and doesn't entirely rely on test results.  I hope and pray that you will find such a doctor for yourself - and SOON.

[prettyprettypumpkin]

You have no idea how awful I have been treated. My own GP is incredibly sweet and for the most part the only one who has said this whole time "Something is wrong, we just haven't found the right test yet", but nearly every one else has been horrible. I've been accused of laxative abuse. At one point last year I had a bowel obstruction that was left undiagnosed for 2 weeks! I lost 20 lbs in two weeks, and the people at my local ER basically told me to go home and call my own doctor. They were concerned enough at my state to have me seen by a doctor within an hour of arriving, but after doping me up and running some test they said "you have to stop coming here whenever you have this problem and start talking to your doctors more". I couldnt believe it. My poor father called the specialist crying and pleading him to admit me to the hospital as I was literally dying in front of him and he wouldn't even return our phone calls. A naturopathic doctor slowly nursed me back to health (if thats what you call my chronic state) spending well over an hour with me every day for a week. Even coming in after hours to help me. Just seeing how much he cared made a difference in my health. But here I am a year later and in agony. its been 10 years. I'm sick of fighting this by myself.

They diagnosed me with polycystic ovarian syndrome because my hormones were out of wack.. but even after taking the treatment for that for several years I am still getting the hot flashes. I had half a glass of wine and my face was burning. PLus the night sweats are so awful... I wake up freezing and soaked several times a night. I just went out to IKEA and purchased brand new bedding because they were getting so disgusting. I am so lucky to have a boyfriend who worked in a nursing home. The most understanding and compassionate guy I've yet to encounter. So many others have been terrified of my health issues. I am too, but so far I havent found anyone to help me.

[prettyprettypumpkin]

so today i went to the doctor and DEMANDED that I be given the 5-HIAA test as well as one for lyme disease so hopefully we will be able to rule those out. She didn't want to give me the test initially telling me that I can't have cancer for 10 years and not be in worse condition. To which I told her she was dead wrong. After going to her office and googling carcinoid for 30-40 minutes she finally agreed to give me the test in order to ease my stress but she felt it was highly unnecessary. If it comes back positive I am going to start kicking every doctor I've seen in the shins.

[Ms_Makita]

also forgot to add skin lesions is common with crohn's disease,as joint pain,if you havent had barium x-ray ask for one.Sometimes it takes repreated procedures for final diagnosis.Prayers,
          Stephanie

[Ms_Makita]

Hi there,I read your other post on dr forum.I really feel for you and relate,I been told for yrs it is just "IBS",now I'm battling ovarian cysts,possible endometriosis, and chronic pain.I got the "in your head" from dr's till I changed to one who is seems to listen to me.Dont settle,rarely will IBS cause someone to have up to 20 bm's a day.I have had those dreaded accidents (public too,I'm housebound,anxiety over "accidents" and alternating constipation)I'm 29 yrs old,so as young as you are,I know it is hard to live like this,but dont give up!
    Celiac is possible,also have you have small bowel barium x-ray? Chrones disease can affect the whole gi system,but my friend has it ,and  it only affects small bowel ,and has  same issues you have.Colonscopy would rule out ulcerative colitis. Small bowel barium x-ray would reveal abnormal area's and narrowing related to chrones,and obstructions are common.She also has a mass to her right (belly button area) reflecting gradual bowel obstruction.Do you have alot of "rumbling" high pitch bowel sounds?
      Hopefully you will find an answer soon.Hang in there,keep us posted!
                     Stephanie
      

[gennifer]

I am so sorry to hear you are in so much pain.  Ask your doctor to try the camera pill-  Much of your small intestines cannot be seen on x-rays or ct scan and if something is wrong the camera pill will definetly see it!  I hope you find and answer soon.