Why so hard to get dx for crohn's?

[Dexky]

Reading through this forum, there seems to be a common theme; years of undiagnosed suffering. I am curious as to the member's (pro's) thoughts as to why this happens.

I think it's because it's chronic and "incurable" so, in the US at least, insurance cos. push back. It's guaranteed to cost them for the life of the patient.

Mark

 

[merrywidow]

because sometime your symptoms can be other illnesses, like IBD, coilitus, i got my diagonsis from a coloscope.

 

[Dexky]

Hi Sharon, but it seems many on here have had multiple scopes b4 dx. I think docs are afraid to call it crohns.

 

[DustyKat]

I think that's a hard one to answer,

As you say about the health system in the US, I don't know if that plays a part there or not but wouldn't be a consideration here. I think in a lot of cases with disease in general, diagnosis is a process of elimination and that seems to be what happens with Crohn's, so much time is spent looking for and ruling out just about everything else it seems. I know in Roo's case it was never a consideration, it wasn't on the radar at all. I don't know why. Is it because there there are numerous combinations of symptoms that patients present with, or time after time tests return normal results even when people are in very acute phases of the disease, or doctors aren't willing to listen to patients or their families, or is the medical profession sadly lacking in the knowledge required to recognise this disease earlier. It's probably a combination of all these things and many more.

I guess the only way we will overcome this problem is for a definitive test to be developed that is able to identify active Crohn's and to also find the genetic markers so at least you can know your susceptibility to it if you have a family history.

 

[Manzyb]

When I was 13 I started getting sick. I was not diagnosed until 15. My general practitioner for a while didn't believe that there was anything wrong with me other than IBS. He kept saying I was at that age where girls get self conscious about there weight and blah blah blah!! We were really frustrated. My mom believed me that I was really sick, but it didn't seem like anyone else did. I finally had to lose 14 pounds in about 3 days before they referred me to a GI doc, and was diagnosed that very next morning. To this day I still hate to go to the doctor for fear of being told that its all in my head!

I just don't get why its so hard either!

 

[Cat-a-Tonic]

I also wish I knew why it was so difficult. I'm still waiting for a diagnosis myself. I've been sick for 8 months now and have had normal blood tests, normal colonoscopy and normal biopsies. It's so frustrating! I don't want to be sick, but at the same time, I want the doctors to find something so I know I'm not crazy.

 

[crohnicaly stinky]

My wife had a rare brain cancer two years ago. I was her advocate and the Internet is a wonderful thing. We had surgery in another city, took the kids and all with us, but it was a good thing and the outcome was good. We then met a radiation doctor and he was awful, after she survives brain surgery and they got all the cancer out, he takes her into another room away from me and gives her a 50% chance of dying! what the heck? Then he wants to radiate her entire head, she would lose saliva glands in her cheeks, wouldn't be able to make tears, and it would take weeks of treatments and there were other bad side affects. So we left that guy and got cyberknife, from a different doctor he was great and it had limited side affects, took one week and worked beautifully. Then I had to fight over a $450 bill from the first doctor for a "level 4 consult" which was a half hour of bad information and scaring my wife needlessly.

The point is every patient needs an advocate IMHO. The Internet is such a good tool for this. I think we can all help our doctors by being informed patients. If you can ask your doctor specifically about certain blood tests and why they did not obtain them, perhaps the doctor will be forced to actually order the test. Or you can take his reasons for not wanting it to another doctor. In my expereinces you have to be proactive. Bascially I think some doctors just don't work hard enough on each patient to really figure things out.

 

[Regular Joe]

I think it's difficult first of all because it isn't a common condition, which equates to there being a smaller pool of specialists that fully understand the illness. The first diagnosis was in 1915 if I'm not mistaken, so until then if you had CD, you were in bigger trouble than any of us now. I'm not bragging about Cleveland, but it serves as a great example. Between the Cleveland Clinic and University Hospitals, a pateint has at least 20 top-notch male and female cardiologists to choose from. I'm talking about specialists that are the best in the nation. That's a fairly large group of doctors that fully and completely understand cardiology well enough for any patient to feel comfortable putting their lives into their hands.

Ere-go Crohn's Disease: there are 2 top-notch GI doctors between the same two major hospitals in Cleveland who specialize in Crohn's disease. There are plenty of GI's here, but once they get any indication, not a diagnosis but merely a suspicion you have CD or UC - boom - off you go to one of the two specialists - and you sometimes have to wait a long time to see them, and buddy don't cancel your appointments!

So with Crohn's disease not as common, and relatively new in the world of medical problems, fewer professionals understand it, so diagnosis is not as easy.

The next factor is that it's an autoimmune disorder which means it affects multiple organs, body parts, regions, etc. Autoimmune disorders are the most difficult diseases to diagnose in the first place. Why? Because they are "non-pathogenic". There is no distinct external source of the symptoms which can be isolated. Nothing can be taken out and grown in a petry dish. No bacterium, no virus, no dog bites, not caused by obesity, no poisons. Nothing. Just a hosed-up internal set of immune system controls.

So maybe the immune system decides to attack the digestive system one day and a person gets poop all over and every living stomach symptom like we have for three weeks. But maybe afterwards, the person starts getting tremors and twitches which get progressively worse over a few months. The bowel symptoms might ease but still be in the background, but suddenly neurological symptoms become evident. Many Crohn's symptoms might be there. But Crohn's doesn't have a neurological component that would manifest in worsening neuro symptoms.

But there is an automimmune disorder that will attack the neorological system: Multiple Sclerosis. MS can also cause severe bowel difficulties. None of us understands autoimmune disorders well enough to predict how any one autoimmune disease can onset or manifest. Some Crohn's symptoms could actually be a part of an onset of different autoimmune disorder like MS.

All of us are probably in the best place in time for having IBD, but it isn't near a complete picture. I've been told by a couple doctors that more is known about effective treatments and cures for depression and mental illnesses today than for Crohn's Disease.

I'm convinced it's not anything purposeful that a diagnosis is hard to get. I believe that Crohn's disease is just very difficult to diagnose for now. Unfortunately, that translates into additional suffering for us.

 

[Jennifer]

I was diagnosed 20 years ago before Crohns was really known by most people. I was hospitalized for a little under 2 months until they finally made a diagnosis. They said that it took so long because I was the first diagnosis in the area so none of the doctors even knew about it then. They had to contact doctors from around the country and even in Europe to figure out what it was. I couldn't even get treatment in that area and had to drive 4 hours north to see a specialist. The same could be true for other people still.

 

[PeninsulaLil]

OK, now I'm going to do my commercial for HMOs and Kaiser Permanente in particular. When I first was having horrible diarrhea and pain, I called the 24-hour 'advice nurse' who immediately got me an appointment with my GP that afternoon. She ordered a bunch of blood, urine and stool tests which I completed by simply walking to another floor. The test results came back that day and the next negative for bacteria, viruses, etc. My GP then sent me for a sigmoidoscopy; which was scheduled within 2 days. I was put on asacol as a first try and i was fine after that for 8 years.

When I recently went through a period of not being able to control with asacol, my GP sent me to GI, who saw me and had me come back the same day (!) for an unmedicated sigmoidoscopy, followed in 6 weeks by a colonoscopy. The office visit after the colonoscopy, he walked me through my colon centimeter by centimeter, explaining what things might mean or probably indicate. He showed me photos on his computer and even had a photo of a healthy colon, so I could see the difference. I couldn't remember when I'd had the first sigmoidscopy; he could look it up on computer because all my records from the last 16 years were on there. We started on prednisone and I was scheduled for a barium xray and a meeting with a nutritionist.

If a new symptom comes up or I have a question about vitamins or anything, I can email my GI or the nutritionist and they reply the same day, usually by email, but sometimes they just pick up the phone and call. One time a routine test showed possible bladder infection and my GI called just to tell me that he had sent test results to my GP and that I should expect a call from the GP! The system has really worked easily and seamlessly for me. (And did I mention that appointments are always on time?)

That said I do think Crohn's is hard to diagnose because symptoms could mean so many different things. Because all my doctors were working together, my records were in one place and instantly accessible and that everything was able to happen in a short amount of time were factors in a relatively quick diagnosis. Every time I read here of someone in serious pain who has to wait weeks for a doctor's appointment, I just can't understand how a medical system can work that way.

OK end of commercial. :ysmile:

Lilly

 

[pb4]

I got DX right away as soon as I saw a GI, he saw my perianal crohn's skin tags, I told him all about the D, mucous and frequency as well as some weight loss, he scoped me and did the usual blood and stool tests but he already knew from the scoping it was a clear case of CD...he also sent me for upper GI tests just to back up his confirmed DX...I was shocked when I joined support boards and saw so many posts from many people talking about difficulty with getting DX...I must be a rare case cuz I was quickly DX...that was soon after my perianal crohn's skin tags were mistaken for hemmies, and the stupid sugeon banded them (tied them off) while they were in a flare (large and hard and painful), this was 19 yrs ago now and the skin tags have stayed (never shrinking down like they did when they first appeared in my teen yrs), if she hadn't banded them then they more than likely would have shrunk down again either on their own or apparently with the help of rectal meds (don't ever mess with perianal crohn's skin tags, they're the biggest pain in the ass literally).

 

[HospitalPatient]

May 29, 2010

Mark:

Greetings. I completely concur with your observation about the difficulties associated with merely diagnosing Crohn's Disease and I think this difficulty causes even more problems that then seen almost inherent to the Disease itself. I call it the: “Emotional Effect of the ‘Journey to Diagnosis’ of a Chronic Illness.” I have had Crohn’s Disease for 25 years and been hospitalized 100+ times, endured many Major Surgeries, etc., and through various Media endeavors I’ve have become somewhat of a Patient Authority on it and BY FAR the most common Frustration I get asked about is Misdiagnosis and/or Mistreatment by Doctors. I have come to learn that while these doctors may have good intentions they don’t see enough Crohn’s Disease patients in their patient population and thus they often treat the ILLNESS and not the PATIENT. This often leads them straight to the “Textbook” and then they either put a Patient prematurely on Prednisone or now on one of the miracle drugs such as Remicade, Humira or Cimzia.

Whether it is Misdiagnosis or “Textbook Treatment,” I think it scars a Patient deeply and causes Distrust and Frustration and takes a DEEP Emotional Toll on a Patient and then it has become another “side effect” of the Disease. This is SO NOT NECESSARY. This also goes into the bigger discussion regarding classifying Crohn’s Disease and Ulcerative Colitis under the Umbrella Term of “Inflammatory Bowel Disease” or in some less severe cases: “Irritable Bowel Syndrome.” There are many reasons for this and it seems logical that Health Insurance Companies play a significant role because even the worst case of Crohn’s Disease may be difficult to diagnose by the best of doctors on just a First Visit and thus by calling it “IBD” or “IBS” it gives the Doctor and the Patient a “Billable Code.”

Accordingly, if the definitions of the Diseases would be Clarified and the Symptoms more widely identified and discussed then just by using the phrase "Inflammatory" to describe what can be WICKED medical,emotional and financial problems, I think we would Raise Awareness to the point where Patients would no longer have those horrific Misdiagnosis stories or Textbook Treatment Traumas.

 

[Dexky]

Scott, My wife is EJ's medical advocate. She's a veterinarian and she speaks their language. Her ed. helps her deal w/ EJ's disease very matter-of-factly which I cannot do.
I'm the tell me what to do and I'll do it type and with this devil of a disease that's the wrong type to be. No one has the answers and even the simple advice people can give rarely matches what another will give you.

pb4, our dx was quick too which is why I started this thread. Some of these people have had multiple surgeries, years of illness and total loss of normalcy and still don't have a dx.

Joe, I think you nailed it technically but it still seems like there is far too much undiagnosed misery of people suffering from the same symptoms. From this point to Michael, I'd think some of the long suffering undiagnosed people wouldn't mind a little "textbook" treatment. It'd beat being told it's caused by stress or it's all in their head. If it didn't work, then I'd think they'd just be back to square one.

By the way Michael, EJ's guitar instructor is a guy named Jordan Weiss and he's a crohnie too.

 

[Vivvian's Mommy]

I went into the hospital for a temp of 104.9 at 12 years old.The doctor said I was severely dehydrated with food poisoning.Well they got my temp. down and I started to bleed.The nurse said it was just my monthly time and my mom said she just ended it.
They did CT SCANS and X-RAYS that whole time with no results.The last day of 6th grade I went to see a GI Doctor.Needless to say I was given a scope wide awake which was very unpleasant because I was not prepared.I was diagnosed with Ulcerative Colitis,later that summer to be also be diagnosed with Crohn's.My doctor never had a child patient so he used all the treatments he could to get it under control.About a year later he sent me to The University of Michigan Children's Mott Hospital.He said after me he never take another child again because of all the suffering I went through because the normal treatments weren't working and I had almost died on him once from internal bleeding.They actually think my first flare up was when I was 8 and had a spider web structure throughout my chest causung me to choke because I couldn't swallow and acid reflux where I have heart burn so badly that they literally had to pound on my back to make it go away because antacids weren't working.

 

[Dexky]

Excellent point Elly.