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all lab work has been normal, but still in lots of pain, is it UC or something else?

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Ulcerative Colitis
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Posted 10/7/2011 10:58 PM (GMT 0)
my most recent bout started 3 months ago with lots of bleeding in the toilet.  doc started me on hydrocortisone enema, and the blood went away in 3 days.  been on 5-asa 4.8grams/day for 3 months along with the hydrocortisone enema.  but the symptoms of abdominal pain, cramping have not resided.  stool consistency is normal.  had several colonoscopies the past 15 years and the pathology has always been "non-specific, colitis". the docs are scratching their heads, since they see inflammation in the colon but the pathology doesn't say UC or crohns.  also they ordered IBD blood panel and all is negative.  stool sample for bacteria/parasite/c-difficile, was negative too.  Are the docs missing anything?  should i ask for another stool bacterial/parasite sample?  can the first sample miss something?  or can there be bacteria infection not detected by the stool sample?  they want me to start antibiotics to kill everything first.  but several years ago, antibiotics made things worse for me, so afraid to.  having another colonoscopy in 3 days, can a colonoscopy 100% diagnose everything?  Anyone any ideas?  i googled differetials for colitis, but mostly crohns, and UC come up.  is there any other diagnosis the docs missing?   HELP! 
Posted 10/7/2011 11:05 PM (GMT 0)
laser, that is very frustration but at he same time, there is that little bit of hope that you don't have UC and perhaps it is something cureable! I hope so. I would think the stool tests would show something if it were there but I have heard that often times stool tests report a false negative. Have you had multiple tests? Blood work usually doesn't indicate much so far as diagnosing UC. They can see if your counts are high and that can signalt hat your body is fighting inflammation but it won't tell you what is casuing it, and that's what you seem to be looking for. If I were you, I would want to jump on those antibiotics and hope it would wipe out whatever is causing the inflammation but with your history of bad response to antibiotics, you're right to be wary! Have you been taking a probiotic? Have you been on the cort enemas nightly? 3 months is quite a while to be on cortidone enemas nightly, they can thin the skin and cause more unneeded problems. Have you tried a 5ASA rectal medication? Some find them to be more helpful. If I were you, I think I would try to get further stool testing. Have you been checked for STIs? When I had a stool test, I had to collect 3 stools in 24 hours. Was yours the same?

Is your inflammation throughout the colon?
Posted 10/8/2011 1:49 AM (GMT 0)
Have you tried going gluten-free for a couple of weeks to see if that makes a difference? Gluten tests are not reliable if you are gluten-intolerant, as I am, tests were negative but my bleeding stopped days after gluten-free began.

It may not be the reason for your symptoms but it is worth trying. Dairy is also another well known intolerance to consider.

Your current symptoms almost sound like IBS which will not show up on tests, although certainly people with UC have those also.
Posted 10/8/2011 11:18 PM (GMT 0)
with flares, i'm miserable psychologically, so anxious, and depressed that it won't get better.  does anyone feel this way?  its not just the physiological pain, but the psych anxiety/depression is debilitating too.  already on anti depressants.  
Posted 10/9/2011 4:15 AM (GMT 0)
With your anxiety and depression, thats could be a major sign of vitamin D insufficiency. I take 6000 ui a day cause I dont go outside with my clothes off, and cause its friken cold where I live, haha. 10,000ui of vitamin D is safe, so 4000ui-6000ui wont hurt ya.

Another thing is that your symptoms, unless its nothing crazy, is most likly IBS. Someone suggested gluten free, which will relieve alot of pain (research shows gluten causes GI symptoms in normal bowels). Also, if you have UC and IBS, a melatonin supplement will help alot, its been heavily researched to reduce symptoms of both. Peppermint oil capsules can also help reduce gut spasms and pain.

Hope my advice helps!
Posted 10/9/2011 12:29 PM (GMT 0)
You said you're taking 4.8 g of 5-ASA daily, but you didn't say which one. I used Asacol at first, which took care of the bleeding and mucous, but not the diarrhea. I switched to Pentasa and most of my diarrhea went away. Talk to your DRs again. My pathology has never clearly differentiated btwn Crohn's and UC either.
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