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When does someone have Crohn's?

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Crohn's Disease
When does a preson have Crohn's?
All the time with periods of flares and remissions whether or not inflammation is evident on endoscopy - 82.4% - 14 votes
Only when there is active disease on endoscopy - 0.0% - 0 votes
Whenever symptoms consistent with Crohn's exist - 17.6% - 3 votes
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Posted 10/27/2011 4:04 AM (GMT 0)
I have been back and forth with Docs trying to sort out my Dx for at least 15 years. For many years they said that even though I had a CT showing 17 cms of inflammed terminal ileum and enteroclysis showing inflammation in the terminal ileum and cecum "most consistent with Crohn's" I could not actually have Crohn's because I had normal biopsies in between those 2 tests - even though all of my symptoms seemed to indicate Crohn's. Then I got a set of biopsies with chronic inflammation and damage to the vilil but only my pANCA was positive and my ASCA and ANCA were negative. I was actually told that the inflammation might have been caused by the prep! Now, I may not be a doctor, but I would imagine that the pathologist can differentiate between chronic inflammation and acute inflammation which would exist if the prep was the case for it, but maybe I'm just nuts.

Over this summer I spent a few weeks in Hawaii with my sister and got very sick. When I came home I went to see my Rheumy because he's really the only one who believes I have CD and that I trust. I also have spondylitis and the only reason I get Humira is because the Rheumy orders it for me. Anyway, I was so sick that he ordered a bunch of tests, including the IBD Serology panel. For the first time ever my ASCA and my pANCA were positive!! I thought that now there could be no doubt as to what is happening to me and scheduled an appt with my GI. He wasn't impressed and still did not seem to think I have CD btu he wanted to do a scope since I had been so sick. I agreed and did so yesterday. This time he found at least two areas of scarring from what he described as significant inflammation, however he did not see and inflammation currently. When I asked if I have CD he straight out said No! Exasperated I explained that all my life I've been sick to my stomach in one form or another and needed confirmation of what exactly is wrong. I wanted toknow if it would take a fistula to finally get an answer. As we haggled over semantics I finally realized that in his opinion someone would only have Crohn's if they currently have visible inflammation on endoscopy. Although he believes that I have had Crohn's in the past based on the scarring he found, he did not see inflammation so I do not have Crohn's and he can't see any reason that I should still be feeling sick. He said that my current symptoms have nothing to do with my past history of Crohn's.

I know... it's time to find another GI. What do all of you think?

Posted 10/27/2011 12:46 PM (GMT 0)
I'm sorry you have been sick, but its good to see you back. I think any GI who thinks you can have CD at one point and then not have CD at another point needs to be replaced. I had this go around with my last GI for a few visits, until we finally understood each other. He meant I didn't have any ACTIVE CD, not that I didn't have CD at all. But I was getting close to the point of looking, because its a basic tenet of this illness. Periods of activity and then periods of remission, so during remission, you still have the disease it is just dormant.
Posted 10/27/2011 2:22 PM (GMT 0)
I think I would be looking for a new GI.
Posted 10/27/2011 5:20 PM (GMT 0)
I had the doctors at one hospital tell me it was all in my head and I was making myself throw up by putting my fingers down my throat. Well less than a week later I was on my death bed (literally) and went to another hospital and THEY figured out I had Crohn's. If you have the symptoms of Crohn's and they do colonoscopies and endoscopies and nothing shows up, have them do a barium test. Don't give up! There are all kinds of tests now that weren't available 20 years ago. They will find out what you have. It could also be IBD, the symptoms are similar to Crohn's without the ulcers and stuff that you get with Crohn's.
Posted 10/27/2011 6:43 PM (GMT 0)
Yep, the same thing happened to me too. Lots of tests, mainly upper Gi's, lots of scratching of heads.
then my EX pc decided I was depressed, so basically telling me this is all in your head!! He puts me
on high doses of whatever the anti depressant was, had a really bad reaction to it, rapid heartrate
sweating, the works. Discontinued that after one day, the next day, was admitted into hospital with
full blown obstruction, vomiting fecal fluid, and pain nothing would help. I cursed that doctor to Kingdom
come. The outcome of that was a very positive Crohns dx. That was some 12 years ago, and have been
having problems and surgeries ever since. The lesson I've learned from that, is listen to what your body
is telling you, you are the only one who really knows what you're feeling. Be your own advocate, because
it's a sure as hell no.one else will be. Lastly find a doctor that you have faith in, even if you have to change
several times. Your relationship with him or her is paramount to your well being!! I still get very sick, but at
least now I'm taken seriously....
Posted 10/27/2011 9:36 PM (GMT 0)
you absolutely without a shred of a doubt need a new GI doc IMHO!!!!!!! how does that guy even have a license????
Posted 10/28/2011 2:02 AM (GMT 0)
Do not pass Go, do not collect $200, get to a new GI ASAP!

PS: darn glad to see you. You have been missed.
Posted 10/28/2011 2:17 AM (GMT 0)
Thanks guys! It's nice to know that I'm not the only one that has gone through this nightmare with GIs. A very interesting thing to note is that the GI I see is one of the top Docs at Mt Sinai New York - supposedly "THE" Crohn's hospital! I've been told by other Docs there that he literally wrote the book (or chapter) on capsule endoscopy and reading the pictures. It' would seem to me that he'd be the very guy I need to be with but his idea that you only have Crohn's when there is inflammation visible on endoscopy and you don't have it when it's not visible is just ridiculous! I even asked if that means poeple with Leukemia no longer have it when they are in remission and he said yes. He makes no distinction between having no disease and having no active disease. He'll be calling soon with the biopsy results and I'm going to schedule an EGD with him only because that will be more expedient. If I go for another GI right now it could take weeks for a new patient appt and I really need to see what's happening with my stomach. I'm having heartburn so bad that it's triggering esophageal spasms which are just unbearable and I need to get that under control ASAP. I've also got a history of esophageal erosions and I'm worried about that. I may need to change my meds to control it and I do believe he could handle that. It makes no differnce in terms of my Crohn's, so I may as well get it done now - while I'm sick.

Dunny and Tootsies - I can imagine the frustration you had when those idiots made their wild guesses. Over the years I've had many humdingers myself. As a teen, my Mom was told that my weight loss was because I was likely anorexic and I need a shrink. When I was older I had "gastroenteritis" - yeah from CROHN'S!!! I also had a Doc whisper that I should stop going out and drinking with the ER nurses because I worked in that hospital and did sometimes socialize with the ER staff and even some residents and fellows. BUT, I didn't ever have more than 2 drinks because unlike them, I didn't live in Manhattan near the hospital and I had to DRIVE home. The last WHOPPER was only a few years ago when I was having terrrible problems with my teeth. My poor calcium absorption combined with a bad overbite actually cracked a few upper front teeth and they broke at the gumline. This QUACK wrote a letter to my PCP and said that he had never seen such dental distruction in a patient who did not have bulemia!!!! Thank God he didn't say that to my face or I might actually have smacked him.

Being sick is so terrible in itself and it frustrates me to no end that so many docs out there don't listen to patients or just don't believe what they do hear. I know some of the guys have had a rough time getting a Dx but it seems that women get the run around especially with BS emotional/psych Dx and that so many end up at such great risk because we go untreated for so long. We just shouldn't have to end up with obstruction, perforations, hemorrhages or fistulas just to get the appropriate treatment that we've been seeking.

OK, rant over. Thanks again for your opinions and support. 

Posted 10/28/2011 4:25 AM (GMT 0)
I sure have missed you . So sorry you doc is a A hole . He admits you (had) crohns . Sense there is no known cure,,,,duahhhhhhhhhhhhh , you still have crohns . Time to find a new doc . I dont think this one could find his own back side with both hands .
Posted 10/28/2011 9:02 AM (GMT 0)
I don't have anything good to say about he big shot Mount Sinai doc I went to for my second opinion. I found him quite obnoxious. He did spend a fair amount of time with me but he said some things that were so contrary to everything I had read up till then. For instance, he told me that after my resection (which I had at NY Presb) that I wouldn't need to take medicine anymore for my Crohn's. He said that because mine was a mild case that it would take another 10 years for a stricture like the one I had at the time to bother me again. DUHHHH I remember looking at him like he was crazy. I told him that I was quite sure that with Crohn's there could be microscopic damage occurring over many years and that I had every intention to stay on a maintenance drug like Pentasa. Then he gave me some info on a food company that sold some expensive Crohn's friendly foods (I think he and the other 2 Drs in that practice were part owners). It was because of this doctor who came so highly recommended that I decided to do my own research into surgeons and hospitals in NYC. I really lucked out (well I did spend hundreds of hours researching) with the surgeon I had and his staff. I also met my regular GI almost 2 years ago when he was still with St. Vincent's before they closed.. he was called into my case as I was admitted from the ER. I've been seeing him ever since and I am very happy with him.
Posted 10/28/2011 1:04 PM (GMT 0)
Hi Keah,
13 years ago, I started vomiting non-stop. I was put on GERD medication and was classified as a GERD patient without any endocopies (I refused as my late father had 2 and still they could not detect stomach cancer). Also, I had normal recurrent abdominal cramps and C. This was diagnosed as IBS. However, in 2007, abdominal pain became very severe and C turned into persistent D. I had ASCA and ANCA tests and they were negative. However, calprotectin in stool was nearly 250, so I had to undergo my first colonoscopy. There were inflammations for the naked eye and biopsies were taken. They showed mild active infectious ileo-colitis. Antibiotics were prescribed but my doc told me that he suspected external pressure over the rectum and he considered this to be a gynecological issue. So, I saw 8 gynecologists in a row and they all confirmed that the pain had to do with the colon. I returned to my doc and had a bunch of CT scans, enterocolonographies, tests and MRIs without any help. So, again, my doc thought that this might be in my head and I was suffering from IBS. I saw 5 psychiatrists who decided that I was anxious by nature, needed no medication and there was no cause for my severe abdominal pain and D. I had 2 colonosciopes and 2 endoscopies with mild active ileocolitis the result and gastritis and duodenitis. Throughout these years, I had flare ups, took ample antibiotics and Salofalk. The turning point in my diagnosis was in September 2010 when I started a severe flare up with severe diarrheal bouts that lasted for more than 2 weeks. At that time, my doc prescribed reluctantly 40 mg pred and it was to his astonishment that I became better. Also, my WBCs and neutrophils were very high and stayed elevated for 6 months. It was then that he realized that there was something wrong. I started azathioprine and then Imuran but failed them after 7 months. Last summer, I sought a second opinion. I had an entroscope and a proctosigmoidoscopy. As usual, no picture damage but biopsies revealed chronic proctitis and enteritis in the jejunum, ileum and terminal ileum. This made my doc define me as an indeterminate colitis patient with an inclination towards Crohn's. He said that the real disease would emerge in 10 years. He refuses to call it Crohn's and tells me "You have inflammations". However, he switched me to Methotrexate injections to withdraw pred (2 years now), budesonide enemas and pentasa tablets. My proctitis flare ups can never be under control:( It seems that docs have a problem in defining CD, so in order not to provoke my doc, I never call my disease CD and just say inflammations.
Have you had an entroscope? Neither endoscopies nor colonoscopies reach the small intestines. CTs and MRIs miss this too.
Hope you don't have this disease but definitely you need to find another GI.
It's a long journey but hopefully, you will find the right GI.
Take care!
Posted 10/28/2011 7:59 PM (GMT 0)
I have an absolutely wonderful GI. Several months after my Crohn's diagnosis, I developed very severe D. My doc assumed it was a Crohn's flare and put me on 60 mg of Prednisone which made it worse. It was early in my relationship with my doc, so I didn't trust him yet. I live in a small town in Northern Michigan, so I sought a second opinion downstate at University of Michigan hospital. It was a terrible experience and that fancy university doc did little to help me. I returned to my original doc, who ordered stool cultures, and it turned out I had Salmonella (food poisioning) and that's why the Pred wasn't helping. Once I got on antibiotics I got better. My doc had a long talk with me and very sincerely APOLOGIZED, and said he mis-diagnosed me and was so sorry. That was over 4 years ago, and he has been a great doc ever since.
I think a great GI doc needs to understand their medical information, but they also need to be able to LISTEN to you and BELIEVE your symptoms. I also have so much respect that my doc was willing to admit he made a mistake. I can't stand docs who put their egos before providing good medical care. I hope you don't give up until you find someone you can work with. I'm so sorry you are going through all of this!
Posted 10/28/2011 8:26 PM (GMT 0)
GI's can vary on philosophy and treatment ideas..I have moved around some since my dx..I feel it is important to shop GI's if you can till you feel comfortable..Some are in it for the money and seem to have all their information from drug companies it seems?? My doctor now has never treated me for an all out flare and seems to be more concerned over what I am eating and not messing with the predisone unless I self taper myself..?? I have not had any tests for awhile except for blood tests..I had one GI I dsiliked he was rude and did not treat my disease in a manner I felt was acceptable..I do understand the long term predisone usage and teeth collapsing..I hope my bones are not doing the same thing..?? If I move again, I may have to deal with GI consulting contests..I try to stay in-network as well which can sometimes be not as good..
Cindy
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