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NEED ANSWERS RE: CROHN'S DIAGNOSIS! IS IT THIS HARD!?

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Crohn's Disease
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Posted 1/7/2013 11:10 AM (GMT 0)
I am a 24 y/o male from central PA who is getting the constant runaround about my horrible, persistent and debilitating abdominal pain. It is accompanied by chronic nausea, fevers, joint and muscle aches, severe lower back aches, chronic watery diarrhea and sweats like you would not believe.
I have a "diagnosis" of "Chronic Abdominal Pain" from a doc at University of Pitt. Med. Center. Honestly, I think that is just another way of saying, we do not know what the hell is wrong with you. I go to a pain mgt. clinic, but the doc is very reluctant to put me on anything that really, really helps the pain. I have a very high tolerance to pretty much most rx, especially opiates. I am on 3 Norco 5mg/325mg a day. Does very little to relieve pain but is better than nothing i guess.
Anyways, my question is....can Crohn's Disease be this elusive and hard to diagnose by medical professional's? If so, I would like to hear how some of you with a confirmed Crohn's diagnosis went about doing so and what hell did you have to endure and for how long before receiving the diagnosis. I am so convinced this is Crohn's, you could not convince me otherwise. Please help me, I really do not know what the hell else to do. I have lost all hope for being able to live a life that I may enjoy, any comments/answers will be greatly appreciated. Thank you all.
Posted 1/7/2013 1:41 PM (GMT 0)
Crohn's is typically diagnosed via biopsy of the colon, done during a colonoscopy. There are a few people who will have inflammation only in the small bowel that cannot be biopsied by typical scopes. It can take a long time to get a final diagnosis. Have you been scoped?
Posted 1/7/2013 1:53 PM (GMT 0)
I'm presuming you've had all the relevant tests done? Blood/stool tests, colonoscopy (with biopsies taken), CT/MRI scan, pill cam, etc? If not, you need to get those done ASAP. With Crohn's, you have to rule out disease in the small bowel as well as the large one, so if you have a clean colonoscopy, make sure you get a small bowel test done as well - the pill cam, or capsule endoscopy, is currently the best method for visualising the entire bowel.

Your symptoms do sound like Crohn's, but they could also be colitis (there are different types of colitis, not just Ulcerative Colitis) or a bacterial infection - there are a few which mimic Crohn's very closely. (If you want to know more, read this article.)

If you can't persuade the University of Pitt. doctor to take you seriously, seek a second opinion. Fevers and watery diarrhoea indicate something else is up besides IBS or chronic abdominal pain. Best of luck...
Posted 1/7/2013 3:22 PM (GMT 0)
Hi I would make an appt. to see a Gi. The Gi doctor was the one
whom diagnosed me after running test.
Posted 1/7/2013 3:57 PM (GMT 0)
NiceCuppaTea is right on w/advice. The small intestine is some 20 foot long. They don't call it "the dark continent" for nothing. Its not the easiest body organ to view and diagnose any problems it may have.

Most Crohn's starts in the terminal ileum and can be detected by colonoscopy - but not all by any means. I'm a prime example: my Crohn's struck first in the mid-ileum (small intestine) and didn't show up in the terminal ileum detectable by scope until some 20+ years later.

You might want to check your life and health insurance coverage NOW and do NOT let them lapse as if and when you get a Crohn's disease Dx none of the insurance companies will want to insure you.

Posted 1/7/2013 5:23 PM (GMT 0)
Wow - you sound like me in 1980, I had mouth sores, joint pain, had to go to the bathroom before finishing a bite of food.  It took from October 1980 until very early January 1981 to find out I had Chrohns Disease and that was over 30 years ago. Mine started in the large bowel and it did not show up for another 12 years in the "typical" diagnostic area of the ileum.  In 2001 I had my one and only surgery , removal of ileum, 2 ft. small bowel, 6 ft. large bowel. I am really surprised if you have had all the scopes that you have not been diagnosed.  Wow, it sure sounds like Chrohn's Disease.  Good luck, once they diagnose you maybe you can start taking something to make you feel better instead of masking your symptoms with pain meds.  It doesn't sound like they are helping do that either.
Posted 1/8/2013 4:02 AM (GMT 0)
It took me five years to get diagnosed. I had sore joints, nausea, and crippling pain up under my rib cage. A colonoscopy and endoscopy showed nothing abnormal, and my blood tests were within normal limits--except for a SED rate ten times normal (which my doctor shrugged off as "just means that there's an inflammation somewhere in your body"). I was initially diagnosed with gallbladder problems; they removed my gallbladder and things got even worse. But nobody wanted to hear that. The same doctor told me that I was "killing myself with stress" and lying when I said that I had a happy marriage. He finally decided that I might have costocondritis (an inflammation under the rib cage) and sent me to a rheumatologist. The rheumatologist found that all of my trigger points were sore; he diagnosed fibromyalgia. I kept asking why the digestive problems were so much more unbearable than the joint pain, and he told me that digestive problems go along with fibromyalgia. I eventually stopped going to him. It took a major stricture (which involved increasing lower left quadrant abdominal pain, to the point that I could barely walk--and even then, my doctor diagnosed me as having acute appendicitis. But at least he insisted on a pre-op CTscan, which showed that I had Crohn's and a stricture that required immediate surgery.

So it can take a long time, depending on your doctors. But at least you know what Crohn's is and what questions to ask.
Posted 1/10/2013 12:58 AM (GMT 0)
I noticed my Crohn's starting off with major Diarrhea, vomiting and nausea. I also had pain quite a bit too on and off. My general Dr at first thought I had a bout with IBS, but as it progressed he referred me to a Gastroenterologist for more intensive testing. I had every test possible, bowel sample, blood work, upper & lower GI, and finally an endoscopy and colonoscopy, ultimately leading to my diagnosis of Crohn's. It took them about 5-6 months total to figure it out. I would agree with the others on here though, a scope should clearly define if you have crohn's or colitis or not. Good luck and feel better soon!!
Posted 1/10/2013 1:19 AM (GMT 0)
hey rem. i have UC, but i figured i'd comment since i go to a GI doctor in oakland by the univ. of pitt campus. are you going to pitt right now? my GI doctor is at upmc presby and he's a great doctor.

if you haven't had a scope yet, definitely get one. i had all the same symptoms as you and it will help knowing what is going on.
Posted 1/10/2013 5:59 AM (GMT 0)
I would just like to start by saying thank you all so very much for your advice. I have had numerous colonoscopys and they have been "normal", various endo's and I am scheduled for another one here soon because my pain has moved from my lower abd. to up above my belly button recently which MUCH increased vomiting and nausea, as well as it still killing me in my lower ab too. When I went to UPMC Presby (I only went once and he (Yadav) said there is no reason for me to come back), doctor Charad Yadav said "I do not think it is necessary to do an endoscopic capsule which really frustrated me as well as my GI doctor here in Altoona. Also as one of you stated above that yours got worse after your gall bladder was removed, MINE TOO! I have had a small bowel follow through, numerous MRI's, stool studies, urine analysis', so much blood work it's unreal, numerous CT scans (which the doctor told me that I have had so much radiation I now have a 1 in 1000 chance of dying from cancer due to radiation). My GI specialist told me he will do the endoscopic capsule if this next endo comes up neg. Unfortunately, I just today quit my job because this pain in so crippling and I threw up on a customer....I am at my wits end and would really rather be dead. Dr. McKibbon, my GI doc, said if he cannot find anything abnormal w/ these tests he has ordered he will refer me to either the mayo clinic or john hopkins in baltimore. He ordered blood tests to see if I have deficiences for vitamins amongst other things common with Crohn's. I just do not know what to do from here. I just want to get on with my life, for heaven's sake I am only 24 and still live at home w/ my mother. One more thing, could some of you please tell me how you went about pressing this issue with you doctors, no answer is stupid so please post whatever you think I should do whether it sounds ridiculous or not, I am open to anything. THANK YOU ALL SO VERY MUCH! It seems you all care about me more than the doctors that I see, which is very sad.
Posted 1/10/2013 6:03 AM (GMT 0)
Hey CrohnieToo, a question for you too. When you said you went 20 years before getting a positive diagnosis, what did you do in the mean time? I don't know if I could go that long w/o being diagnosed, I just barely have the willpower now to go on.....
Posted 1/10/2013 6:06 AM (GMT 0)
Jeez I'm sorry I keep forgetting to say some things in my replies, I also am ALWAYS deficient in Iron, Vitamin C, Potassium, Vitamin D and in the past 1 1/2 weeks I have dropped 20+ lbs. I am now at a horrible 104.3 lbs. My WBC count is ALWAYS high too, w/ no apparent reason for it to be.
Posted 1/10/2013 6:26 AM (GMT 0)
I have UC. I had d for years before anyone found out I had UC. They always said I had IBS but never ran any tests. I can't offer any support on how to get diagnosed but I can offer something to the poster who says their WBC count is always elevated. I too am anemic and sometimes anemia can cause a high WBC count. I too have this. Normal is around 10000 and mine is always over 12000. It makes it really hard to tell when you have an actual infection. I hope you get some answers soon. Last year I was throwing up 10xs a day everyday and I had every test possible. Finally the doctors gave up and said it was stress. Eventually I figured it out on my own. I am severely lactose intolerant. A single sip of milk and I have d and vomit all day. It was making my UC worse and I didn't even know I had it. Then when I figure it out my parents say to me. Oh yeah when you were a baby you were lactose intolerant. So that could be why I have had d my whole life.
Posted 1/10/2013 6:44 AM (GMT 0)
So can UC be as elusive as CD? Also, w/ all the tests (which is near every one) that I have been through, do you think they would have caught UC or not? Or can that also be dragged out for years and years? What exactly do they look for in UC that they don't in CD?
Posted 1/10/2013 7:02 AM (GMT 0)
UC and CD are basically the same thing except CD can occur anywhere in the digestive track. Anywhere from your mouth to your anus. Some people even get mouth ulcers with the CD. UC can only happen in a continuous line starting at your anus and going up your colon. So UC is usually less elusive. Occasionally you can be diagnosed with UC and it later be changed to CD. There is also another form of IBD but it is less common and I can't remember what it's called right now. Also UC affects the inner most lining of the colon while CD can affect the full thickness. A colonoscopy should have caught UC I would think. As long as they did the biopsy.
Posted 4/11/2013 3:24 PM (GMT 0)
I can relate I'm a ''most likely crohn's'' my CRP is 35.4.I've been diagnosed with celiac,IBD,IBS.(polite way of saying they don't know I suppose) Reccuring uveitis,aphtous sores, my blood work is a mess....but if I stop my Pentasa its to the emergency room I go and usually admitted I can't take prednisone anymore because it was affecting my heart .I've been on Infufer for anemia,I have diarrhea night and day pain night and day,very weak nauseous,vomit sometimes,low grade fever chills blah I HATE IT!
Posted 4/13/2013 6:31 PM (GMT 0)
God, what is it with all the spammers lately? Nobody wants your useless, overpriced, rip-off junk. They are starting to flaming well annoy me.
Posted 4/14/2013 3:49 AM (GMT 0)
I think the best thing for you to do is to find a GI doctor who will listen to you! I was "lucky" in some way because when I started having rectal bleeding, I knew what it was because my father has had Crohn's since he was 33. I am my father's daughter. I remember when Vicodin (and hours of sleep) was the only thing that took the pain away...those years I remember all too well. :(

Yes, Crohn's Disease is not easy to diagnose because it can affect anywhere from your mouth to your anus and anywhere in between + joints and skin. It is an auto-immune response that was triggered by something. The key is how to calm the response which is not an easy task.

You can ask your GI doctor about sending lab work to Prometheus Labs in California (http://www.prometheuslabs.com/about.asp). This lab offers testing for Celiac, Crohn's, and UC markers in the blood. It's very expensive, but I believe it's the only place who completes this type of testing in the US. If your doctor agrees to send blood to them, remember to have your blood drawn on a Mon, Tues, or Wed. The lab is not open on the weekend and if the local lab freezes your blood, there is an increased chance of false results. I found this out the hard way when a sample was frozen and I almost went into liver failure because my levels of 6MP were too high but the first test didn't show it. The second test made the office flip-out, the levels were so high!

As Teddtlove stated, we with CD and UC are often lactose intolerant so stay away from milk-based products. Also had a colleague who was having similar issues (everything came back normal on scope, EUS, labs, etc.) and she was allergic to soy-based foods.

The best advice is to hang in there...we too have been there and understand!
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