Types of CD and surgery question

[Tesscorm]

I have a couple of questions regarding the different types of crohns and surgery.

I've read about the different types of crohns - stricturing, fistulizing, etc. but am not sure I understand it.

First, how do you determine if you have stricturing or fistulizing crohns? Are there other types (other than mild, moderate or severe)?

I believe there is a test for NOD2 and, if positive, increases the likelihood of these types - is this correct?

And, if there is such a test, can it be determined that you do NOT have stricturing or fistulizing crohns? Does this mean you will never have either problem? I'm confused about this as I thought continued inflammation would inevitably cause strictures, the only variable amoungst people being 'how long' until strictures occurred.


As for surgery, Stephen's last MRE indicated inflammation in the distal loops and the GI suggested that, should the inflammation turn to scarring, surgery be required and the fact that it involved the loops would mean more extensive surgery (unfortunately, there was too much other conversation to get into more detail about this).

I'm not sure if I can explain my question but, here goes...

For simplicity, lets assume the small intestine is 7 feet and loops, right to left every six inches. If the inflammation was situated over 3 inches within the section 'between' loops (so a straight path), the surgery to remove the scarring/stricture would be straightforward - remove the damaged 3 inches resulting in one reconnected section.

However, let's say the inflammation and resulting scarring/strictures affected three loops on the left side, how would this surgery be performed? Would it actually be the removal of a portion of all three loops and then reconnection at three separate areas? Or would you need to remove a continuous long sections that includes the three loops plus the undamaged loops on the right side plus the 'straight' areas between the loops?

(I hope that made sense???)

Thanks!!

 

[DustyKat]

First, how do you determine if you have stricturing or fistulizing crohns? Are there other types (other than mild, moderate or severe)?

It is determined by your presentation. Some people never develop fistula's but have extensive scarring but others can have very little scarring and develop a fistula, like Matt.

Inflammation and scarring that is present for an extensive period of time can lead to a perforation and/or fistula simply because Crohn's affects all layers of the bowel and inflamed bowel resting on inflamed bowel can cause this complication.
Just as someone with fistulising disease can develop scarring if inflammation is present over an extended period of time too. I know that muddies it for you but either complication is possible under certain circumstances.

The types of Crohn's are identified by their location, the fistulising and stricturing are characteristics/complications of location and are descriptive terms. These descriptive terms fall under the same umbrella as other complications such as obstruction, fissure and abscess.

I believe there is a test for NOD2 and, if positive, increases the likelihood of these types - is this correct?

I think NOD2 is characteristic of ileal disease but don't quote me on that! I will tag Judith to this question.

For simplicity, lets assume the small intestine is 7 feet and loops, right to left every six inches. If the inflammation was situated over 3 inches within the section 'between' loops (so a straight path), the surgery to remove the scarring/stricture would be straightforward - remove the damaged 3 inches resulting in one reconnected section.

However, let's say the inflammation and resulting scarring/strictures affected three loops on the left side, how would this surgery be performed? Would it actually be the removal of a portion of all three loops and then reconnection at three separate areas? Or would you need to remove a continuous long sections that includes the three loops plus the undamaged loops on the right side plus the 'straight' areas between the loops?

They would tend not to do repeated cuts and joins if the area affected was over a limited area. With each cut and join you increase the risk of complication. Also it may not be as simple as having scarring sitting nicely confined to that area of bowel. By that I mean, because there is an inflammatory process involved with inflamed tissue resting on inflamed tissue (the loops) there is often a gluing together of those loops and/or internal fistula between the loops.
I see what you are saying about the lie of the bowel but in reality it doesn't quite sit like that in the body so you may well find that even though more than one loop is involved it doesn't necessarily follow that large amounts of bowel are removed. Those loops can in actual fact be in quite close proximity to each other.

I hope that answers your questions to some degree Tess. I am heading to work so doing this in a bit of a rush. I will come back to it though when I have more time.

Dusty. xxx

*Text added.

 

[Patricia56]

It is very confusing Tesscorn. Part of the confusion is that stricturing is used to refer both to an acute inflammation and swelling of the intestine and to a non-acute condition where the intestinal wall has been scarred by the inflammation. The scarring will not go away. The acute inflammation will (hopefully) go away with treatment.

It would be very helpful if they would come up with different words for these things but the doctors don't seem inclined to do so.

Anyways. The reason the scarring is a big problem has to do with the particular shape and function of the intestine. The closest analogy I can think of is a tube that is dumping soup into cans. The stuff going through the tube is sometimes thin, sometimes thick or lumpy. It moves through the tube because of pressure from above but also because it is getting squeezed by the sides of the tubing.

Imagine that part of the tubing is swollen from inflammation so it's much narrower than it should be. Because Crohn's affects the tissues all the way through, the swelling goes deep and may run all the way around the tube. Once healing has happened there may be scarring left behind. Having ulcerations and swelling inside your intestines is pretty much the same as having those same things on your skin. So you can imagine that big ulcerated swollen patches on your skin would leave scars.

But the scars run all the way around the diameter of the intestine. In the food tube analogy, it would be like someone put a strap around the tube and tightened it up and left it that way. The tube couldn't expand or contract as needed and that might cause it to get blocked.

OK, so now you know about stricturing. When a doctor says you have strictures you will have to clarify which kind they mean (and you can have both at the same time). They may not know for sure if you are flaring since telling the two kinds apart when you are flaring can be difficult.

Stricturing, as you would guess, may result in surgery. Not necessarily but if there is substantial scar tissue left and the stricture is significant then the docs will probably recommend surgery for scar tissue. If you have an acute stricture usually they will try to treat that medically with medicine in order to avoid emergency/urgent surgery.

Fistulas and abscesses are thought to be caused by chronic inflammation leading to a breakdown in the tissues. That allows fistulas and abscesses to form.

As I understand it (and it is very fuzzy so it's not a bad idea to talk to your doctor about these things) moderate to severe Crohn's includes both fistulizing and stricturing disease.

The other way that I have heard Crohn's defined is by the kind of treatment required to get you into remission.

If you require biologics then by definition you have severe Crohn's unresponsive to lower levels of treatment.

If you require immune modulating meds then you have moderate to severe Crohn's because you have dodged the biologics bullet.

If you can be maintained largely on 5-ASA meds with occasional treatment with entocort/prednisone (as in once every several years) then you have mild CD.

There are no tests available (to my knowledge) that reliably and validly predict disease severity. There aren't even any that can tell you for sure if someone has CD or UC let alone how bad their disease is going to be. Some research results are suggestive that things like NOD2 genotype is associated with disease severity but there are problems with that research and I would not bet anything on it at this point. For one thing, it's not entirely clear that everyone means the same thing when they talk about different levels of disease severity. I think you can see why.

As for surgery and your kid.

It's my experience with my own son that until they got the swelling down it was difficult to know what was really going on in his gut. And even then, intestinal loops move around in the belly - they're not static - and I've heard a couple GI surgeons say that they never know exactly what they are going to find until they get in there, partly because of that very reason. So I think it might be difficult to know now what kind of surgery he might need and it's entirely possible that he will not need surgery at all.

That said, there are surgical procedures that attempt to preserve the most intestinal length possible when doing this kind of surgery. One is called strictureplasty where they split open the stricture and sew it back together in a different direction.

 

[Judith]

Hi Tesscorm,
As DustyKat and Patricia56 mentioned, Crohn's Disease NOD2 - related gene mutations are "implicated", "associated" "related", "correlated" etc. with:
- Early Onset (Pediatric / Childhood onset Crohn's)
- Stricturing Behavior
- Fistulas / Penetrating Disease
- Need for surgical intervention
- Stenosis
- Bowel Obstruction
- Ileal disease location
- Perianal disease location

The NOD2 gene mutations (and others) are used as a tool to help physicians better predict the course of disease and what medications may or may not be tried to obtain remission

Researchers have discovered a "significant" or mathematical association with these characteristics in NOD2 related Crohn's disease but these associations are by no means 100%. Crohn's would likely be a far easier disease to understand if this was the case.....

There is also evidence for more severe disease when patients have two copies of certain NOD2 gene mutations instead of mutations in only one gene.

There are three main NOD2 gene mutations (more information available from our Wiki [wiki=Prometheus NOD2 / CARD15 Test]HERE[/wiki] and [wiki=Nod2 / Card15 Gene ]HERE[/wiki]) that are tested for in relation to Crohn's Disease, but there are multiple less common gene mutations possible and some are associated with Crohn's and some are not. To further complicate the subject, people can have one of the more commonly associated gene mutations in the NOD2 gene but never get Crohn's disease. Crohn's is an extremely complicated condition that is caused by a myriad of positive and negative effects including genes, environment, microbes, and other factors - some of which are not yet fully understood.

There are other genes associated with Crohn's disease that are correlated with "severe" disease ([wiki]ex. IL10 - Interleukin 10[/wiki]), Ileal location (ex. IL10), Ileocolonic location ([wiki]ATG16L1[/wiki]), susceptibility to specific types of microbes, etc.

The disease testing services can offer insight into Crohn's disease and the "presumed" progression of the disease. There are new genes constantly being discovered as to their association and precise role in Crohn's - some genes are even protective against Crohn's!

I am putting together a list of what genes relate to IBDs and how. It is by no means pretty (or even readable) at present... but stay tuned!

 

[Tesscorm]

OMG, thanks Dusty, Patricia and Judith! Amazing info!!! It's answered and clarified so much for me!!

New questions were popping up as I was reading but I need a bit of time to process it all! :study: And, I'm sure I'll be back tomorrow with more questions. :redface:

Thanks again! :rosette1:

 

[Jenn]

CCFA had an educational symposium this past weekend here in San Diego and Dr. McGovern from Cedars-Sinai in Los Angeles gave a fascinating talk on the role of genes. The most interesting thing was the beginning of developing of targeted treatment based on the individual's type of IBD based on their genes. They may even start classifying Crohns/UC as subtypes of IBD based on gene types. But, genes aren't the whole picture, environment and triggers play a huge role to those susceptible. They said they'd post slides, I'll link them when I see them.

 

[Tesscorm]

Jenn, I don't know if you saw the presentation that momoftwinboys posted a while back (link is below). She discussed the role of genetics and the potential to target treatment based on knowledge gained through genetic research (she also discussed other potential causes/triggers, ie environmental, etc.). I found the presentation very easy to understand and interesting. If you haven't watched it, it's probably worth watching. http://www.crohnsforum.com/showthread.php?t=41689

 

[Jenn]

The slides are now posted, see the links near the bottom of the page. The Genes talk is fairly meaningless without explanation, as I look at it, and lots of duplicated slides for some reason. The surgery one is excellent on its own. The medications one is good too, I have some hope for the near future. Dr. McGovern said at the talk that he wasn't hopeful for a cure before, but progess is being made in understanding the immune disorders at an exponential pace right now, so maybe it will be SOON.

http://www.ccfa.org/chapters/sandiego/programs/