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I was told I have non-fistulizing Crohn's

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Posted 9/12/2007 8:00 AM (GMT -6)
Has anyone heard of this? My GI doc (who's a real winner) off-handedly told me (after I asked about fistulas) that I have the kind of Crohn's where there will be no fistulas. He said some types of antibodies that they tested were negative. That's how they knew this. I haven't seen any information about this and was curious if someone here could explain it to me.
Posted 9/12/2007 8:50 AM (GMT -6)
I didn't know there was a test to see if you had fistulizing Crohn's. I do and always worry that another is going to form.
Posted 9/12/2007 10:13 AM (GMT -6)
Bizarre. Never heard of it.
Posted 9/12/2007 10:39 AM (GMT -6)
Ohana, do you get copies of your records and test results? I'd like to know what the name of the test or Antibody is. I know I have fistulizing CD, have heard it called that, didn't know there was a test.
Posted 9/12/2007 11:09 AM (GMT -6)
I don't have the fistulizing Crohns either. I have what they call stricturing type of Crohns. There are 3 types of Crohns and I can't remember the name of the 3rd one. My surgeon told me I could possibly develop fistula's later, but that is only because I have had multiple resections and they would be a side effect of the surgeries not the disease.
Posted 9/12/2007 12:13 PM (GMT -6)

I've heard of it...some patients with CD are prone to gettng fistulas...a cluster of genes were discovered that impact the behaviour and severity of CD in each patient, likely the reason why the disease is so individualistic....

here's a link I found when I googled non-fistulizing crohn's...

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=15628701&dopt=AbstractPlus

I've had crohns for 16 yrs straight (no full remisssion ever) and luckily have never developed fistulas.

:)

Posted 9/12/2007 2:30 PM (GMT -6)
Did you have the Prometheus test done? I did, and I just noticed that there are patient values versus reference values for several different things. Each is described below. Mine shows that I don't likely have small bowel involvement but (this scares me) I likely have severe disease.
Posted 9/12/2007 3:13 PM (GMT -6)
Ohana, your doctor is mistaken. There is no known, reliable way to predict whether or not a Crohn's patient will develop fistulas. Yes, there is some *correlation* between certain antibody levels and the *likelihood* of developing fistulas, but there is simply no sure fire way of predicting with certainty.

The three types of Crohn's are inflammatory, sticturing, and fistulizing. Over time, inflammatory often changes to sticturing, or fistulizing, or both.
Posted 9/12/2007 4:37 PM (GMT -6)
I would think there are those of us who are more prone to fistulas then others (I've already had a fistula, so I guess I fall in the prone catagory!). I didn't know that there was a type that they are for sure won't fistulize though. I would never say never on something like that, but who knows!
Posted 9/12/2007 5:05 PM (GMT -6)
Crohns disease falls into three categories and individuals can find overlapping in their disease's expression. They are predominately stricturing, predominately fisulizing, and predominately inflammatory. Obviously everyone has inflammation and some of us with stricturing disease do get fistulas, but usually these fistulas are the result of severe occlusion, such that the fistula formation may be the body's last ditch attempt to keep the bowel flowing (I've had one of these.) But for some individuals inflammation is the most predominate symptom and they suffer from fevers, malaise and pan-colitis like symptoms.
Posted 9/13/2007 12:55 PM (GMT -6)

Thanks for all the replies. I really learned a lot about this and now have done some further investigating.

What I learned: I need to get a copy of all my test records and examine them myself. Apparently the doctor doesn't care to share all information with me. How can I make educated decisions about what meds I want to take without knowledge? He basically told me he didn't care what I tried and that I should make that decision. He gave me several options but didn't bother to go over pros and cons of any of them and just gave me a handout to read. He is turning out to be a turd of a doctor (which considering his speciality doesn't surprise me!)

I need to write up a big list of questions and send them to my doctor. He gives very vague answers and makes me feel I am wasting his time. My ability to search for a new doctor is slim to none since I have to stick with this medical facility and he is the only full-time GI. It takes 6+ months to get in to see him so I doubt I'll have luck getting into the part time guy.

He did say that right now I have non-fistualizing CD, and insinuated that it could change in the future. But, he did not tell me if I have Inflammatory CD or Stricturing CD. Based on my symptoms that seem to be moderate at this time and the fact that they didn't say anything to me after my CT scan, I would guess it is inflammatory. But wouldn't it be nice to know. Isn't it possible that the drug of choice would differ depending on what kind you have?

I guess I have just begun the journey of living with CD AND the journey of dealing with the docs!

Posted 9/13/2007 1:24 PM (GMT -6)
I was Dx in 1987 with CD. I never had a fistula to my knowledge until this year. The CT scan didnt even show the fistula, mine was intestine to intestine. My ileum perforated and when they went in to do the Sx that is when it was discovered. I had been flaring since Aug 06 after a year of remission, the pain I had was no different from any other flare I had....in January I had a CTE and no fistula was seen in that test either...I wonder how long it was there...guess I'll never reeally know.
Posted 9/13/2007 3:07 PM (GMT -6)
I saw my GI yesterday and asked him if he thought I would ever get a fistula. If you remember, I have the stricturing type of Crohns. He said it was highly unlikely that I would. I have had Crohns for over 30 years and never had one, and from the stories I hear on this board, I pray I never do.
Posted 9/13/2007 7:26 PM (GMT -6)
Dragonfly, your fistula probably developed the same way mine did, as a late stage development of stricturing crohn's disease. I had SBFT etc done three months before my first surgery in 1993 and it showed an almost completely occluded bowel in the TI but no fistula. A couple of months after the SBFT and after being put on steroids again, I bent over one evening and my hip, back and right side exploded in pain. I couldn't move for a couple of minutes and then slowly it eased, but I was left with this gnawing ache in my hip. Since I knew I was sick and this was an altogether new pain, I called my doc. He ordered bloodwork and the next day I was hospitalized because I was septic. After a month on triple antibiotic therapy, everything was settled down and a decision was made to resect the bowel because I was no longer able to manage tube feeds without vomiting. The bowel was basically closed, yet all this time i was literally running to the bathroom 18 20 times a day. Still no indication that there was a fistula, but when they opened me up there it was linking a defect ahead of the occlusion in my TI to my sigmoid colon. The tract was literally diverting most of what was getting through around the obstruction.

Surgeons figure that the pain event was the fistula forming when an abscess broke. I went on to develop three more abscesses post-surgery that had to be drained percutaneously. But when everything finally healed, I had no more of those kind of complications. Thankfully, when my stricture shut down the second and third time surgery was done before abscesses and fistulas formed.

So even though I have had a fistula and abscesses etc. I do not have fistulizing crohn's. It was just a complication of the stricture. And like Nanners, I am thankful that I don't bear that burden.
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