Was just diagnosed

[airaidsiren]

Hey guys,

After lots of diagnostic tests, my GI doctor told me he is positive I have crohn's ileitis, which from what I understand is crohn's affecting the ileum part of the small intestine. He told me that no medication is currently required and that I should go back in 6 months or so to get tested again and see how it progressed.

My question is, should I be getting any medication?? Should I ask for another opinion? Shouldn't I be getting something to ease the inflammation and treat the ulcers? My current symptoms are constipation, intense abdominal cramps and mild pain. Sometimes I also get backpain, not sure if it's related.

Your input is really appreciated..

 

[Scipio]

Your doctor is treating you via the "step-up" method, which is to increase the treatment if and when the disease gets worse. It used to be common for all Crohn's to be treated this way. But now it is considered appropriate for only very mild disease. For moderate to severe disease the data indicates it is better to treat it "top down" - hit it with the powerful drugs early and often to stop the disease progression and prevent the build-up of permanent damage to the gut.

My disease was quite mild in the early days, and for the first two years I didn't take anything either beyond a couple of short courses of budesonide to induce full remission. But eventually it began to progress and I had to go on stronger stuff.

If your disease is mild enough that it doesn't cause you any suffering to speak of, and the doctor can't find any signs of progression by colonoscopy and blood tests, it may be reasonable to just observe it for a while to see how it's behaving. But I'd have the doc keep a very close eye on it for any signs of worsening.

 

[airaidsiren]

Many thanks scipio.

I wouldn't call my symptoms "suffering" but it does get frustrating to get cramps and pain after each and every time you eat something. Especially if you love food as much as I do.

Can the ileum ulcers go away by themselves though? And if this takes a long time, say months, wouldn't this narrow the intestine?

I apologise for all the questions, I'm just really new to this.

 

[Scipio]

Crohn's is an episodic disease, so the ulcers may go away by themselves for a while. But without treatment eventually you will suffer a flare and they will come back. It is that repeated damage, month after month, year after year, that results in the build up of scar tissue resulting in a narrowing of the ileum, increasing the risk of a bowel-blocking obstruction.

And worse than a narrowing of the gut is a fistula - where the damage bores a hole clear through the bowel and into some other part of the body or through the skin to the exterior. Fistulae are difficult to treat complications that create a lot of suffering. Far better to prevent them rather than cure them, if possible.

Fortunately, I've never had a fistula but I do have a moderate narrowing of the ileum that must be carefully watched for signs of progression.

 

[airaidsiren]

Many thanks man, much appreciated! I am really glad that forums such as this exist to help everyone in need.

How does the moderate narrowing of the ileum feel like? Do the cramps and pain get even more intense? .

 

[Scipio]

How does the moderate narrowing of the ileum feel like? Do the cramps and pain get even more intense? .

I doesn't feel like anything most of the time. not a lot of cramping. I get cramps on rare occasions, but I'm not sure that is associated with the stricture (narrowing). I associate the cramps with an attack of diarrhea, which for me happens quite seldom - just a few times per year.

I did have one partial obstruction at the stricture, and that manifested as total constipation, moderate nausea, and inability to eat - logical since nothing was moving. The obstruction resolved itself after a few days and everything has been flowing more or less normal ever since.