Ongoing narrowing without inflammation?

[BayAreaChronie]

Hi all,

I recently had scopes done and was told there is no more inflammation. In a sense, remission (though i still have abdominal pain).

I was told however that there is ongoing narrowing of the ileum.

They want to play this by pain levels to see if I will need surgery soon.

Question is how do you have ongoing narrowing if there is no inflammation to cause narrowing? Isnt narrowing done by inflammation that leads to scarring and that is narrowing?

Thanks again forum!

 

[Jennifer]

Hey there fellow Californian.

The thing about scaring is that over time scars shrink so the area will become more narrow with time. I encourage you to read this as it relates to your issue: http://www.crohnsforum.com/showthread.php?t=50494

 

[BayAreaChronie]

Thanks.
Had no idea as this wasnt explained to me.
Was just kind of given the heads up of the future options and to judge based on pain.

Seems in this case the Dr proposes resection when the inflammation is gone.
With me, I had severe inflammation that is gone now and scarring to the point of not being able to get to the ileum. Yet my GI says to just go by pain levels.

Hopefully this approach by the GI isnt risking anything by delaying a possible resection. Guess its the last stop when pain first increases, further cramping, additional medication dosage fails. Least with my GI.

Though on the other hand, glad I dont have to have it just yet. Seems terrifying.

 

[Danico85]

My doctor told me when i had my latest stricture in the rectum that he HOPES its alot of inflammation because if it turns out to be a benign stricture (scar tissue) then i would need surgery. If its just inflammation then it can be sorted with anti inflammatorys, suppositories or steroids but you cant cure scar tissue. I was told id either need a baloon dialation or my full bowel taken out (because of the location).

Luckily it was inflammation

 

[BayAreaChronie]

damn. this doesnt seem fun. this will be my first surgery as i just was diagnosed recently.
Though I am probably more worried at the notion of waiting around to see based off of pain.
Wouldnt complications be worse than surgery - id think so but im not a GI.
Even more so is how much more narrow will this get if have no inflammation? I mean how much can scars keep swelling up to cause narrowing? How many weeks does it take for scarring to stop swelling?

 

[Jennifer]

Scars continue to disappear for years. I had a resection 14 years ago and sometimes have minor pain at the resection site. Nothing horrible and nothing that requires surgery. A resection scar is a small area yet scaring from inflammation damage takes up a larger area which may make it harder for food to pass through putting you at a greater risk of an obstruction.

Complications from a narrowing would be a bowel obstruction. Those can be life threatening so its important to evaluate how bad it is before deciding on having surgery (sounds like where you're at now) before winding up with an obstruction and having to get emergency surgery. I do not advise waiting for it to become an emergency. I'm not suggesting that you freak out or anything like that though. You can watch out for signs of an obstruction or partial by reading about other people's stories who have dealt with one: http://www.crohnsforum.com/showthread.php?t=29625

Have you had any symptoms at all besides pain (how bad is the pain, scale of 1-10?)?

 

[BayAreaChronie]

thanks all for the updates and info.
Pain is on an off - some days I cant move and others nothing but just an annoyance pain.

Ill read up on the bowel obstruction threads by others and see when a decision was made for resection or not.
Still being new to this and just a bit freaky when your own GI asks for a 2nd opinion and they decide lets wing it and wait, on something that can lead to something serious, yet also trying to avoid already having a resection when this disease seems to require many resections in the lifetime.
Im thinking maybe getting my own 3rd opinion with another GI to see what they recommend just because of the obstruction emergency fear.
Still need to get adjusted to the fact that this disease can go from being hidden to constant issues.

Thanks again all. Been using this forum for a bit and everytime I do i get helpful insight into crohns.