Discussions By Condition: Gastrointestinal conditions

flushing, fainting, diarrhea, and IBS - puzzle solved

Posted In: Gastrointestinal conditions 3 Replies
  • Posted By: wildmonkeys1
  • June 12, 2010
  • 06:46 PM

For awareness purposes...

My flushing, fainting, diarrhea, and IBS - puzzle solved!

My health complains were: flushing, fainting, diarrhea, abdominal pain, and IBS. I had also been diagnosed with orthstatic hypotension (tachycardia arrhythmia & low bp).

Carcinoid Cancer is a very rare form of cancer and can be difficult to find even when medical professionals are looking for it. Some tests to help determine Carcinoid Cancer: CgA, 5-HIAA 24 hr urine test, CT scan (doesn't always see it), and Octreotide Scan (aka OctreoScan, 85% accurate). Carcinoid Cancer is often misdiagnosed for years. Please educate yourself on carcinoid cancer as well as carcinoid syndrome.

I was misdiagnosed for years by many doctors. By the time they found my Carcinoid Cancer, I was at stage 4.

Thank you,
Jennifer Holm
Stage 4 Carcinoid Cancer patient,
Advocating Carcinoid Cancer Awareness

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3 Replies:

  • 1. Keep in mind - this is RARE, but it DOES happen. Carcinoids are very rare, though they remain the most common tumour of neuroendocrine origin. Annually, about 1000 – 1200 cases of carcinoid tumour is diagnosed in the UK and 5000 in the US. 2. Out of multiple GI tests that came back normal, one CT scan (out of many) showed a thickening of the ileum wall. That allowed us to go in and biopsy that area through a colonoscopy. The scary thing is... 15 months prior - I was in the hospital for a week with what they thought was a bowel obstruction. However, I had a clean (or "unremarkable") CT scan and a clean colonoscopy at that time. 3. The CT scans did not actually show the 2.5 cm tumor or the 9 lymphnodes that were invaded by cancer. Spots on the liver were chalked up to a "fatty liver". 4. I did not experience ALL of the symptoms below. 5. Most doctors do not know about this kind of cancer because it's so rare. My GI had only diagnosed it 2 other times and still didn't know much about it. My GI surgeon had never done surgery on someone with carcinoid cancer and had to read up on it. I'm the 13th carcinoid cancer patient in a 30 yr oncology practice. I'm 40 yrs old. With that, i give you... Well known signs and symptoms of carcinoid syndrome include :FlushingOver 90% of patients with carcinoid syndrome suffer with this symptom. No wonder that this is the best known symptoms of carcinoid syndrome.Flushing is often triggered by the consumption of alcohol, cheese, chocolate, spicy foods, hot drinks, exercise, defecation, physical, sexual or psychiatric excitements.It could occur on the face, back or limbs. It starts as a sudden redness spreading on the face to the neck or back. There is an associated feeling of been hot or warm. There may also be increased heart beat (palpitation) and nausea or vomiting. Flushing is thought to be caused by the release of substances that increase intestinal motility and decrease absorption including bradykinins and calcitonin gene-related peptides. These agents act on the blood vessels of the skin, causing them to dilate with increased blood flow.Commonly, flushing involves the skin of the face, abdomen, back and limbs, lasting about 3 – 5 minutes. In severe forms, it could also be associated with obviously distended veins on the face, redness and tears pouring from the eyes. This is common in those with long standing carcinoid.A third form of carcinoid flush is a red patch appearing on the face or back or abdomen, lasting for minutes to hours.Finally, the forth and final, as well as most severe form of carcinoid flush is one lasting for hours, is one associated with swelling of the face, tearing, low blood pressure, difficulty with breathing, diarrhoea and racing heart. This is an emergency and requires immediate medical attention as it is potentially fatal. This type of attack is commonly seen with lung carcinoid tumours.Flushing episodes become less and less troublesome with time for those with carcinoid syndrome over time.You can pick from a selection of anti-redness creams from amazon here.Abdominal PainAbdominal pain is a regular component of the symptoms of carcinoid syndrome. Up to 53 % of patients with carcinoid syndrome present with abdominal pain of some degree. This could be so severe that over 40% of all patients with carcinoid syndrome need referral to see a specialist. The pain is usually in the central abdomen. It may become generalised. It is cramping in nature, continuous, without any known relieving or aggravating factor. If there is associated bowel obstruction, the abdomen may become distended with vomiting, plus or minus constipation.On examination of the abdomen by the attending doctor, there would be vague tenderness elicited with hyperactive bowel sounds called borborygmi. The patient may even hear theses soundAbdominal pain as a symptom of carcinoid syndrome is due to the release of substance P, neuropeptide K, tachykinins, prostaglandins and serotonins. Substance P is a chemical that is involved in pain modulation in the gut. It triggers the pain receptors of the gut once it is release in more than usual quantity as in carcinoid syndrome.Prostaglandin causes the smooth muscles of the wall of the gut to go into rhythmical contraction. Neuropeptide K, the tachykinins and serotonins are thought to be involved in the formation of spider-web-like materials that causes adhesions and fibrosis, leading to bowel obstruction .DiarrhoeaThis is another of the known symptoms of carcinoid syndrome. It occurs in every three of four patients with carcinoid syndrome. Very watery stool is passed, which may be up to 10 – 30 times in 24 hours. This leads to severe dehydration and loss of salt (electrolytes) from the body. The diarrhoea is caused by the release of prostaglandins, motilin and serotonin. It is often associated with flushing triggered bradykinins. Valvular Heart DiseasesValvular heart disease occurs in over half of individuals with carcinoid tumour. The reason for this effect on the heart is not for sure known, but it is believed that the release of substances like serotonin over a long period help to damage the heart valves. This occurs as a result of endomyocardial fibrosis (formation of spider-web-like strands in the heart, holding down the heart valves) from serotonin stimulation. On the right side of the heart, it leads to carcinoid syndrome triscupid heart valve disease, and on the left side, it leads to mitral valve disease.Evidence for this serotonin theory stems from the fact that valvular heart disease is rare with lung carcinoid tumour compared with liver carcinoids. The lungs contains high levels of monoamine oxidase which is believed to degrade serotonin produced from these tumours. Valvular heart disease as a symptom of carcinoid syndrome of the lung is thus rare.When it does occur with lung carcinoid, a unique type of carcinoid valvular heart disease called left-sided carcinoid valvular heart disease is seen. Liver carcinoid deposits cause left hear valvular heart disease. The explanations for lung carcinoids rarely causing heart disease is that the mono-amine oxidase, a chemical agent that break down serotonin making it impotent, is produced by lung cells.WheezingOne of the symptoms of carcinoid syndrome is wheezing due to bronchospasm. This is due to the release of histamine, tachykinins and bradykinins that lead to constriction of the bronchus. Severe bronchospasm has been reported in up to 20 % of patients. They present like they are in severe acute asthmatic attack. There is usually an associated flushing and or other skin changes.The use of steroids and salbutamol inhalers help in relieving this symptom. Skin LesionsRepeated flushing from released chemicals leads to permanently distended veins on the face, arm or limbs, with associated increased pigmentation or redness in white skin called telangiectasia. Telangiectasia is commonly seen in those with a skin condition rosacea. (*This info was pulled from abdopain and is consistent with all reputable medical sites as well as wrongdiagnosis. I think it provides a good in-depth explaination.)
    wildmonkeys1 14 Replies Flag this Response
  • I think it becomes really very painful situation for a person who is suffering from this cancer as, I have never heard about this cancer and the symptoms that are really panic and should taken under consideration by the people who are suffering from stomach problems most of the time due to over eating and in no time.Thankshttp://www.liferaftgroup.org/gist.html
    namratasnv 30 Replies Flag this Response
  • hello, I have just recently had all the tests mentioned and although bloods and urine slightly raised they have all been negative. Even my octreoscan was negative. still unsure after reaging your blog as I have all your symptons. is there anything else it could be?
    Anonymous 1 Replies
    • November 11, 2014
    • 08:22 PM
    • 0
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