# Finding it hard to believe I have IBS and not something fatal :(



## teacupcakes (Jul 18, 2010)

I am 21. I've had non-watery diarrhoea a seemingly random number of times a day (anything from 1-15) for about six months. No pain. Feeling constantly bloated, full, always tired (though the latter preceded the diarrhoea). I've had a colonoscopy with biopsies (negative), full blood count, bacteriology, celiac tests, stool tests, abdominal/pelvic ultrasounds (and a chest x-ray thrown in for luck) all negative. I am terrified I have carcinoid. Absolutely terrified. If I have it's presumably too small to pick up by sonography or x ray and if I have diarrhoea it presumably means it's spread. Knowing that the probable lifespan for carcinoid can be 10ish years is terrifying when that only means I would be in my early 30s when I died if I did have it. I can't even bring myself to mention this as a concern to my doctor because I know full well I self-diagnose too much and she's been mad at me about it before (I don't want to be written off by my doctors entirely). I started taking calcium carbonate + vitamin D a couple of days ago and it seems to be having some positive effect but I am still incredibly scared I have carcinoid. Would it have had an effect if I did? I don't know, and can't find any literature to suggest it's even been tried. Is it even possible to have diarrhoea this constantly and for nothing but IBS to be wrong with you? Sorry for the big pile of worry. For obvious reasons I can't really talk to most people about this.


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## Kathleen M. (Nov 16, 1999)

It is possible to have severe diarrhea (worse than yours) every single day for several decades and it be IBS and nothing deadly (or other functional GI disease as you can have functional diarrhea that is IBS without the pain or discomfort, but you say you have bloating--which counts as discomfort-- and the other discomforts are: disruptive urgency--gotta go now can't put it off at all, incomplete evacuation, or cramps not bad enough to be painful but just annoying. Functional diarrhea--like IBS without the discomfort, is rarer, but can happen)Calcium is generally constipating so can firm up diarrhea no matter what, it isn't specific to IBS diarrhea.You didn't mention flushing and that more than diarrhea seems to be the most common symptom (something like 90+% of people with it)--although if you have the usual health anxiety presentation you will convince yourself ever little bit of warmth you have ever felt is obvious the deadly flushing and you will be dead shortly.







That is just what the anxious do whenever another symptom is mentioned. Diarrhea can be found in a bazillion diseases and when it isn't also present with all the other things a disease cause you can't assume you must be that one rare person that only has this one symptom of a syndrome and none of the others.


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## Hester (Jul 5, 2009)

There is a urine test for carcinoid tumors/syndrome. 5-HlAA is what I believe it is called here in the States. It is a 24 hour urine collection with a timing component to get it back to the lab. It is not full-proof at about 70 to 80 percent accurate, but it not terribly hard to do nor expensive. I think it might help to either confirm or allievate your concerns. Oh, you do have to follow specific dietary instructions for a week prior to taking the test as well as confirm that any medications you take will NOT interfer with the results. I had a small artifact on my liver scan and was fearful of the same thing. This test has helped to ease my mind that it was indeed just an artifact.


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## teacupcakes (Jul 18, 2010)

Hester said:


> There is a urine test for carcinoid tumors/syndrome. 5-HlAA is what I believe it is called here in the States. It is a 24 hour urine collection with a timing component to get it back to the lab. It is not full-proof at about 70 to 80 percent accurate, but it not terribly hard to do nor expensive. I think it might help to either confirm or allievate your concerns. Oh, you do have to follow specific dietary instructions for a week prior to taking the test as well as confirm that any medications you take will NOT interfer with the results. I had a small artifact on my liver scan and was fearful of the same thing. This test has helped to ease my mind that it was indeed just an artifact.


My concern is that even if I had a positive urine test, I have no apparent mass. There is, at the moment, nothing to remove, which is particularly terrifying. I am worried about doing the biochemical workups for carcinoid because I wouldn't be treatable if they were positive.Kathleen, thank you. I am in a funny situation right now where basically everything innocuous has been ruled out but very little else, and am driving myself insane with worry.


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## Kathleen M. (Nov 16, 1999)

Strangely with the body a lot of the "innocuous" diseases (won't kill you just make you miserable) have lots of very obvious and annoying symptoms that seem like something major and lethal must be going on.A lot of the dangerous and lethal things like to keep it quiet. Besides IBS I have severe allergies and a family history of really high blood pressure. The blood pressure is the lethal one, stokes and heart attacks abound in my my family as well as ending up in a wheel chair because the vessels to the legs gets so damaged from peripheral artery disease.The high blood pressure, I'd never know I have. If anything I feel a little bit better when it is high then when the medication gets it under control and where it should be. The allergies aren't the kind that even make an attempt to kill me, but I've had all sorts of annoying and disruptive symptoms from them. Including the few weeks I spent as a purple person. Very purple. Like I belonged in a Willy Wonka movie and ate the candy when I was told not to purple.There is a new blood test in the USA that can see IBS biomarkers in the blood so prove you have the innocuous, but I don't know if or when they might get that available in other places.


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## Hester (Jul 5, 2009)

teacupcakes said:


> My concern is that even if I had a positive urine test, I have no apparent mass. There is, at the moment, nothing to remove, which is particularly terrifying. I am worried about doing the biochemical workups for carcinoid because I wouldn't be treatable if they were positive.Kathleen, thank you. I am in a funny situation right now where basically everything innocuous has been ruled out but very little else, and am driving myself insane with worry.


I would bet you will come back negative as the condition of which you speak is very rare. . . I sense how upset you are, kind of damned if you and damned if you don't. IBS-D with SIBO is what I have and believe me when I say that there ARE many, many days I FEEL like I am dying. Some days I want to. There are days that I feel so much pain, my butt burns, my sides and body ache, my mind is cloudy, my gut churns, I cannot leave the bathroom and I am so jealous of people who can go out and eat whatever they want. They have a life! I would bargan with devil to have the "old" me back!! Like you, I was healthy and active at one time and then "BOOM" this happened to me. For a long time, I suffered a deep burning sorrow and fear. I had to finally go to counseling to discuss whether I might die and to grieve over this condition that has put so many limitations on my life and carries with it so many unanswered questions regarding treatment and prognosis. Since I have had every test including the 5-H, I know it is not immediately fatal. Could that liver spot end up being something next year when I have another scan or ultrasound? Sure. No one ever really knows when they will die or of what. You should find a way to live your life to the best that your "condition" permits with joy. I would get that last test and then you WILL know. Carcinoid syndrome is treatable with certain medications when the tumor cannot be located (different treatment than IBS), granted you would not have a long life if the tumor cannot be found but with the right treatment, it might be more enjoyable that what you are currently enduring. . . and in ten years, medicine WILL grow by leaps and bounds. I have to add that if the 5-H came back postive, a 64-slice scanner with contrast could probably pick up the tiny tumor(s). There is also the exploratory surgery. If your anxiety over this is hindering your ability to function, you may want to talk to a professional. Being ill regardless of whether a condition is life-threatening or life-altering is traumatic. I can tell you are very well educated and a brilliant person. Good luck to you.


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## IBD/IBS Author (May 24, 2007)

teacupcakes said:


> I've had non-watery diarrhoea


Cupcake,FYI - I'm not a doctor but I've seen a lot of GI's, and if you're stools are frequent but not watery then you're not having diarrhea, you're having frequent bowel movements. Also, you're doctors have done just what they are supposed to do to make a proper IBS diagnosis. They've run and done all pertinent tests and found all to be fine. This is the classic definition of a person who has IBS. And yes, it can make you feel so bad that you're convinced something worse it wrong. Perhpas this will alleviate some of your worry.


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