Crohn's Disease Types and Progression?

[Karma]

I've read that CD is often classified by location and by type.

The type is often referred to as Inflammatory, Stricturing or Penetrating/Fistulizing.

So my question is do we all progress through the types over time, or are there genetic variants of CD which have the different types? i.e. if someone is diagnosed with inflammatory CD will they never develop the penetrating effects?

I can never seem to get a straight answer beyond 'everyone is different' from my doctors.

 

[DJW]

Hi. I'll do my best.

We don't necessarily go through all the different types. But, if the crohns inflammation is untreated or under treated all bets are off. Complications can include structures, perforations, fistulas. This may be a bit broad of an answer but I hope you get what I mean.

 

[mish2575]

I have fistulizing, but so far no penetrating. I definitely have inflammation.

 

[If*]

Interesting. Crohn's can do a number of things ~ change course at anytime and one can have one form or all forms ~ ie stricturing, penetrating, what most have is inflammation/ulceration. There are common areas but that does not mean that it will stay there. From what i have been told that resection/s can put a patient at risk for future penetrating CD but then again that is how it can present itself to start.

Why do people need surgery while being aggressively treated, or why people do fine and can be in remission on no treatment and others get worse?

I am really confused on the nature of the illness as there is never a warning of what can be around the corner. However it forces us to pay attention to your body. That the onset of something 'new' will present itself sometimes subtly.

If a Dr. could predict the actual course he would be amazingly well known. Perhaps he/she would be the one who has the 'magic' wand i have heard mentioned.

 

[xeridea]

...But, if the crohns inflammation is untreated or under treated all bets are off. ...

Having under a year's experience finding out what I can, it seems CD is a very personal disease and manifestations all depend on individual's immune response and progression course of disease is hard to quantify and predict empirically due to individual variations.

I recently met with a GI who put it well saying it shouldn't be called "Crohn's Diseases" but rather "[Insert your Name]'s disease".

And I have learned that appropriate treatment is of utmost importance. DJW's advise above is spot-on.

 

[Karma]

This makes for interesting reading:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3270503/

Looks like there are particular genetic mutations which make certain effects much more likely. It'd be good if patients were tested so we can have some idea...

 

[DustyKat]

I agree with those who have posted above Karma. It is a difficult question to answer once you get beyond the diagnosis of Crohn’s and its phenotypes. The disease can change over time and people do move through varying stages of the disease over their lifetime although not necessarily the different types.

I have two children with Crohn’s and at the outset, when my daughter was the only one diagnosed, I finally came to the conclusion that its cause was likely equal parts genetics, environment and trigger. So pretty much what quite a bit of the literature states. My views on that changed however when my son diagnosed. As it turned out they both have disease isolated to the ileum, it is of the fistulising phenotype, it was severe at the outset and they both required surgery very early on. With that I now think in our case a NOD2/CARD15 mutation exists and that is essentially the cause of their Crohn’s with little else playing into it.

There is a blood test called ASCA that seems to give some predictive idea as to what may be expected if it is positive. I don’t know how well these claims stack up though.

Amongst the Crohn’s disease patient population, those testing positive for ASCA appear to have a poorer prognosis than those testing negative. For example, ASCA-positive patients are more likely to develop complications (eg, internal fistulas, fibrostenosis, perianal disease) or require surgical intervention.

http://www.moavenandpartners.com/doctors/information_form/asca-testing-for-crohns-disease.shtml

Interestingly enough my daughter has just had bloods drawn and for some reason the GP ordered this test. I don’t know why given she has been diagnosed for 8 years and we know what phenotype she has and the severity of it. That said it will be interesting to see if the results stack up with what we do know.

Dusty. xxx

 

[Karma]

Perhaps GIs could use increased MRI surveillance on people who are more likely to get complications. An annual scan might be more reasonable to them if they can discriminate a subgroup more likely to need it.

 

[DustyKat]

I don’t think that is at all an unreasonable suggestion Karma, particularly when disease is located in the small bowel where scopes can’t reach.

Dusty.

 

[dave13]

I had a resection 11-25-13,my upper jejunum.Three weeks ago I had a fistulotomy and three draining setons placed.My current GI told me the fistulas have been misdiagnosed by my last GI for several years at least.I thought I had really bad hemorrhoids.The last GI gave me a colonoscopy and he new about them,but said nothing.I,like a fool,trusted him.

I feel if the fistulas were addressed years ago there is a possibility I would not have had a resection.At the least I would have been properly diagnosed and measures could have been taken to limit the chances of it progressing to the point it now is.

I have had a small bowel follow through,in July,and the resected area is looking good.The GI tract the SBFT checks is free of inflammation.The stricturing part seems to be doing o.k. for now.

My diagnosis is severe perianal crohns disease now.If the first GI did his job I feel it would have been diagnosed as penetrating CD years ago and I would have been on the alert for the symptoms that led up to my blockage.

I started Remicade last week.I was on Pentasa up to my first infusion.I am prescribed Canasa as well and just finished a prescription of Flagyl and Cipro.

I feel confident with my current GI and his entire staff.They have treated me well.I know CD can be unpredictable but I feel now I know to be vigilant and have a competent and knowledgeable GI to work with.

I see the colorectal surgeon on a regular basis as well so he can check on the setons.He is refreshingly blunt without being callus or uncaring.He has a good sense of humor too .