Discussions By Condition: I cannot get a diagnosis.

Chronic diarrhea 10+ years

Posted In: I cannot get a diagnosis. 115 Replies
  • Posted By: prettyprettypumpkin
  • February 17, 2007
  • 06:44 AM

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.

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  • You probably need to be more specific on what your main problems are when you speak to your doctor. If you present a large number of symptoms, doctors often assume that you are imagining things unless they can see a clear link. It is wrong, but sadly it is true. The kidney stones were probably caused by dehydration, which is not surprising if you have had chronic diarrhoea. The most obvious thing is a food allergy (possibly gluten). But you could have a parasitic infection also. Another possibility is a Candida overgrowth. If you have had scans, these should have identified any major physical abnormality. What do you mean when you say your hormones are a mess? Is this a view or the result of a test? Also, what do you mean by lesions on your skin?
    Anonymous 42789 Replies
    • February 17, 2007
    • 00:52 PM
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  • My poop has been checked for parasites, and that was all clear.. just a whole ton of undigested food. I have gone gluten free. I 've been tested for celiac. as for my hormones.. I get weird hot flashes all the time. I will be sitting in class and all of a sudden my face will get all hot and red and sweat will start pouring down my back. I have acne. I can only assume these symptoms are hormone related because I have done nothing to bring them on. I eat very healthy. High fibre low fat but my tummy keeps getting bigger and bigger. I dont understand. My clothes aren't fitting and it hurts to have any sort of pressure on my stomach. I can no longer lie on my right side as it is too painful.The skin lesions are like somewhat flat red crusty, slightly bloody sores that I have had for months now and can't get rid of.
    prettyprettypumpkin 47 Replies
    • February 17, 2007
    • 06:54 PM
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  • Did they do a vaginal or lower abdominal ultrasound? Ovarian cysts can cause extreme bloating, gas, irregular bowel movements, and pain. I don't think this is the cause of your relentless diarrhea, but it may be a factor in your abdominal pain. Have you been tested for clostridium difficile bacteria in your stools? I think this is a special test you need to ask for it specifically. C. difficile is caused by past antibiotic use, and sometimes the symptoms don't show up for months later. C diff can cause extreme cases of psuedomembranous colitis, with further complications. Docs miss this, and often don't test for it...also have them test for candida overload: this can cause hormonal problems as well as gas/bloating, diarrhea and IBS symptoms. I developed this after taking clindamyacin. Thought I was going to die, with severe diarrhea 10-20 times a day. The docs tested me for this, and turns out I had it...the problem is the treatment for it is MORE antibiotics! I said no thanks, and went to my acupuncturist who prescribed herbs and gave me acupuncture. 2 Weeks later, my symptoms were 80% improved. Another couple weeks and I was completely better. That was over 4 years ago, and I still have trouble at times, but nothing like before. The best thing to take to help your symptoms is a good quality Probiotic. I always take this when I start to have problems... As an acupuncurist and certified herbalist, I have also helped people with severe diarrhea and IBS symptoms, as well as hormone imbalance. There is definitely something going on, and I recommend finding a doctor who will do more tests - especially c difficile. But also please try finding an acupuncturist/herbalist to help you get yourself back in balance. Log on to www.acufinder.com for more info. Best wishes.DOM
    acuann 3080 Replies
    • February 18, 2007
    • 01:51 AM
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  • Oh, sorry, one last thing - could you be pregnant?DOM
    acuann 3080 Replies
    • February 18, 2007
    • 01:52 AM
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  • Nope not pregnant. I take Diane 35 for treatment of polycystic ovaries. I had a lower abdominal ultrasound in december when I noticed my uterus was being pushed to the left by something all it showed was the tilted misplaced uterus. my ovaries were clear of cysts although a year before they had been covered in them.. so I guess thats good. I see a naturopath in conjunction with my other doctors. His diagnostic machine thing picks up problems with my liver that we haven't been able to fix through acupuncture and herbals. I saw an OBGYN about the uterus and he said there was nothing he can do because the pressure is coming from somewhere in my gut. He suggested they look into a carcinoid tumour, so I have a urine test to be collected this week.
    prettyprettypumpkin 47 Replies
    • February 18, 2007
    • 02:11 AM
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  • Hello- I am so sorry to hear that you have suffered for so many years, and I understand that you wish to carry on with living, instead of existing. Celiac disease ....... has a doctor considered this for you? While a diagnosis can be helpful, sometimes a solution is even better. I want to share with you some info. that might change your life. The greatest breakthrough in medicine this decade is the study and application of glyconutrition. I am a health care professional, with CME credits in Glycomics, and I am truly impressed with the science and the results I am seeing. Here is what I would do in your situation, and I want to make this simple and to the point. 1. try a gluten free diet - and this is not an easy task2. use a minimum of these three supplementsa. Threelac, to address an overgrowth of Candida yeast fungib. Advanced Ambrotose - glyconutrients for cellular health, immune modulator and overall healthc. a good broad spectrum probiotic3. consider these other 3 supplements, to support the rest of your bodya. AO - anti-oxidantb. Phyto*Matrix - vitamin, mineral and phytochemicalsc. PLUS - endocrine support - this one may be invaluable for hormonal balancing, for you Now, allow me to provide you with some research links, if I may. www.SweetLifeInfo.com - has scientific research, testimonials, layperson explanation of glyconutrients, etc. Greatly informative. www.CandidaExpert.com - you guessed it, Candida yeast fungi overgrowth info., all that you might want. Just find the links on the Candida page, on the lower left side. I am passionate about sharing information with people, as I suffered for many years myself, and now live vibrantly. May you be blessed with good health! Victoria Smith, BS.HTwww.SignificantHealing.com
    SignificantHealing 3 Replies
    • February 18, 2007
    • 02:35 AM
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  • Please get the stool test for c. difficile.Best wishesDOM
    acuann 3080 Replies
    • February 18, 2007
    • 05:07 AM
    • 0
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  • I had chronic diarrhea for 2 years, later diagnosed hyperthyroid. Still diarrhea. Then had appendicitis and was removed. Still diarrhea. They found stones in my gallbladder at the time of the surgery and didn't remove it then. I had it removed 2 months later. No more diarrhea. My gallbladder was found to be toxic. Something that helped me at the time was Cholestyramine. It is a powder formulated mix to treat high cholesterol but it's side effect is constipation. With me, it was wonderful. No more Amodium.Good Luck. See a new doctor or two or three...
    Anonymous 42789 Replies
    • February 18, 2007
    • 05:23 AM
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  • I've tried chlorestrymine actually. I found it made me quite constipated... I'd go for days without a bowel movement, in some ways it was a nice relief from constant diarrhea, but I have more vomiting when I'm constipated. Plus my doctors were concerned because it made my stool black so they wanted me to stop because it was either making my stomach bleed or making it so we wouldnt know if my stomach was bleeding. ah yikes.. Life sucks sometimes. I'm just sick of fighting this by myself. Its been 10 years. I'm tired.
    prettyprettypumpkin 47 Replies
    • February 18, 2007
    • 06:12 AM
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  • The reason I was asking about the lesions is that a heavy roundworm infestation can cause a trunkal rash (is this what is?). They could also explain a lot of your other symptoms. I am not saying it is that, but you should check it out. The hot flushes you mention might be hormonal. But they might be caused by a sugar imbalance. You probably need to work out when they are occurring in relation to when you have last eaten to find out.
    Anonymous 42789 Replies
    • February 18, 2007
    • 11:41 AM
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  • Night sweats, skin lesions, sore/swollen lymphnodes, diarrhea, vomitting, hot flushed cheeks and B12 issues are all symptoms of a bacterial infection. Look further into these symptoms at www.canlyme.com and click on symptoms at the side and also co-infections at the top of the page. My daughter went 3 years undiagnosed and even the experts at a world renowned children's hospital couldn't figure it out! Testing is poor so you must have a knowledgeable doctor to treat you. All my daughters tests came back negative and the doctors thought she was making it up.
    Anonymous 42789 Replies
    • February 18, 2007
    • 03:05 PM
    • 0
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  • ^Thank you! I was considering that it might be lyme disease at one point, as I used to work at a doggy daycare and was often bit by random insects. I have an appointment with my doctor tomorrow. I will request that I be tested for that as well.
    prettyprettypumpkin 47 Replies
    • February 19, 2007
    • 03:08 AM
    • 0
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  • "I see a naturopath in conjunction with my other doctors. His diagnostic machine thing picks up problems with my liver that we haven't been able to fix through acupuncture and herbals." If you are not noticing results from your naturopath, then I would suggest you find someone else. A naturopath is not a trained acupuncturist, and just doesn't have the same diagnostic training. I would thing your symptoms should show improvements after 3 or 4 acupuncture treatments. Visit www.acufinder.com to find one near you.Best wishes.DOM
    acuann 3080 Replies
    • February 20, 2007
    • 01:18 AM
    • 0
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  • Thank you. My naturopath is a registered acupuncturist as well. Trained in China and everything. He is an amazing man. Was a medical doctor who switched over to naturopathy.
    Anonymous 42789 Replies
    • February 20, 2007
    • 01:21 AM
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  • well.. Lyme disease has now been ruled out and we are waiting the results of the 5-HIAA......
    prettyprettypumpkin 47 Replies
    • February 27, 2007
    • 08:07 AM
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  • So I got the results from the 5-HIAA.... I got a 15.... 8 and under is normal....9-25 is suspected carcinoid tumour and 25+ is guaranteed.. So now I am on a list to see the only specialist in BC capable of diagnosing carcinoid tumours and carcinoid syndrome. I'm looking at 6 months or so.
    prettyprettypumpkin 47 Replies Flag this Response
  • This should have been done via a 24-hour urine sample (was it?). The other thing to watch out for is that false positives are common with 5-HIAA as there are a lot of interferents. Bananas and pineapples spring to mind, but there are others including some drugs. Because it is a bit of an unusual blood test, doctors tend not to remember this. It is perhaps worth checking out if there is anything you could have eaten or taken that could have interfered with the test (rather than waiting six months only to be told you need another test).
    Anonymous 42789 Replies Flag this Response
  • well yes it was done 24-hour collection.... I was on a restricted diet for three days before so food substances I don't think would've interfered that much.. I'm not sure about medications. I should look into it, but in all honesty I'm starting to not trust my GP that much, It has been very frustrating for me because I've been treated so badly by so many doctors and she seems to be the only one who recognizes my symptoms and wants to help me, but she doesn't really seem to be doing anything.... She had never heard of carcinoid, I told her, she had never heard of the test for 5-HIAA, and she seemed to be unaware what the rating of 15 meant. As a good GP shouldn't she be doing research on the issue herself?? Granted she works at a university and typically deals with stuff like std's and the flu...sometimes mono.....I am just finding it hard to believe that even with suspected carcinoid I have to wait 6 months to see the specialist. I understand he's busy but shouldn't I finally be getting some sort of priority? It seems like since hardly anyone has heard of it, its not a big deal, but meanwhile I'm the one who has to stress out about it and suffer for the next half year.... it seems so unfair...
    prettyprettypumpkin 47 Replies Flag this Response
  • I think part of the problem is that it has been thought of as a rare condition, although it now seems possible that it is not as rare as was first thought. At least you have a doctor who is showing some interest. Where did you get your normal range figures from? This should have been supplied by the lab as they have different analytical procedures and standardisation techniques. I have seen a figure of 15mg/ day quoted somewhere as being the top end of the normal range. So these things are not set in stone. I think you would be wise to get a re-test anyway, since it is almost certain that the consultant would instruct this. At least then you would be armed with it when you finally see him or her.
    Anonymous 42789 Replies Flag this Response
  • I've read several different sources that have said that 15 is top end of normal, and several that have said 8 and below is normal.... its starting to get confusing... I agree.. I think a retest should be done as well... apparently for most midgut carcinoids (which is where I think mine is, because it coorelates with the large bulge in my stomach) usually would prefer to have the mean of two 24 hour collection samples... since I have six months to kill I might as well do that test again... My doctor didn't actually have the results in front of her she called and they told her the number but she hasn't received the fax or something... I don't know it all seems so unorganized... I just really get the impression that none of the people I talk to know much about it...
    prettyprettypumpkin 47 Replies Flag this Response
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