Diagnosed with Ileitis

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raggy73

Joined
Dec 21, 2015
Messages
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Hi
Sorry if this is the wrong place for this question, my son is 18 and has been having abdominal discomfort for about 4 months now since arriving back from a holiday abroad, (he also came back with worms) and has had 2 bouts of bleeding when passing a stool, he has just had a colonoscopy and the doctors didn't discuss the findings with us, they just said they would send the results of the biopsies to the doctors but he gave us a letter which said "multiple apthous ulcers at the terminal ileum" but otherwise everything normal. Under diagnosis it said "Ileitis" .He has no weight loss, fever or any other symptoms other than the discomfort and the bleeding but everything I read about keeps shouting crohns disease which is really worrying, surely the doctor would have mentioned this? Can ileitis be caused by anything else?
Thanks
 
I checked it on my search engine and they are one and the same. I don't know why the doctor didn't say Crohn's.
 
I've read a couple of things I could find and it said it can sometimes be caused by an infection with him coming back from abroad with intestinal worms I was hoping that may be the cause, I suppose we can only wait and see what the biopsies. I have tried to add the link to the article but it won't allow me to.
 
Ileitis isn't just CD. This may have been the paper you were referring to:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

Still, I think all you can do is wait for the biopsies.

There are scenarios where infections picked up from world travel can cause ileitis so it could be a possibility. The paper I linked above goes over the majority of them.
 
Yes, thats the article I read, I'm really hoping its something like an infection, I really don't want my 18 year old to have to cope with something like crohns when all he should be doing is having fun, when I know the results I'll post back, thanks for all the replies, its a worrying time and its good to have others to talk to
 
It's probably no help but it sounds like some tropical infection and you may find the biopsies have went to a specialist centre dealing in tropical diseases which is getting more common with foreign travel.fingers crossed that's what it is.good luck all the best.
 
My Bx were normal, but the findings were the same as your sons. It is the same Dx with two different words. I am sure your Dr will explain it all to you.

I hope he feels better soon!

Lauren
 
What was the outcome? I was diagnosed in the ER a couple of weeks ago with Giardiasis and didn't respond to the meds so was hospitalized where they also did colonoscopy and upper endoscopy. The biopsies revealed ileitis, gastritis, and duodenum inflammation
 
I have pretty similar story about myself.. this is my first post.. I am thinking of posting my whole story in a seperate thread..
 
While were still waiting for the results of the biopsies, the doctor has told us that my sons blood work has all come back completely normal and his fecal calprotectin levels are also completely normal, they seem a little baffled by these results, what does everyone else think?
 
My son has Crohn's disease, his blood work is generally normal even in a flare. His fecal calprotectin was always a good indicator for us but the last one showed normal results when there was in fact inflammation.

The "gold standard" for diagnosing CD is that they find granulomas in the biopsies. Some pathologist require those be present for the Crohn's box to be checked off. The problem is granulomas appear in less than 50% of those who have CD and are dxed.

I would wait for the biopsies. In the mean time have the symptoms cleared up? Have you questioned the GI on whether a contracted infection during travel could be the cause?

A lot of times people with CD will have extra intestinal manifestations of their disease such as joint pain, eye issues or skin issues. Are any of these occurring?

Lastly, if the biopsies don't give you a definitive answer and the symptoms persist you could request an MRI, MRE or even a pill cam so that they can get a look at the whole of the small bowel since an upper endoscopy only shows the very beginning and a colonoscopy only shows the very end of the small bowel.

Also I'll see if I can find the link that gives the differential dxes for CD as a lot of them are Infectious causes. I'll post it when I find it.
 
Then there's this

Principal Alternatives in the Differential Diagnosis of Inflammatory Bowel Disease—Crohn's Disease
Crohn's Disease
Infectious colitis
Antibiotic-associated colitis
Amyloidosis
Bowel tuberculosis
Small bowel cancer
Nonsteroidal enteropathy
Diverticulitis
Celiac sprue
Lymphoma
Postsurgical adhesions
Behcet's disease
Ischemic colitis
Radiation enteropathy
Click to expand...

Source
 
So there are a few travel related infections that could mimic crohns disease. I would definitely keep pushing for answers.

The most common mimics I've seen on the board are NSAID related, Infectious related and celiac sprue though Im uncertain if it showed as ileitis. If he traveled to a country where intestinal tuberculosis is common then I'd check for that as well.
 
He is still getting some blood in his stool most days but his stools are well formed, he's never had diarrhoea. He has slight abdominal discomfort a couple of times a week, he has no extra intestinal manifestations that you have mentioned, his appetite is normal with no weight loss and he is feeling well, I'm probably hoping against the odds that it isn't Crohn's but he just isn't displaying hardly any of the symptoms apart from the ulcers on his terminal ileum and the other things I have mentioned, all of this started when he returned from Spain in August 2015 which I have told the Dr's in case it was an infection but they still say it looks like Crohn's. I'll have to wait for the results of the biopsies which seem to be taking forever but I'll definately request more tests if need be. Thankyou for the link.
 
Well, i had colonoscopy before 3 weeks. the report said "multiple aphtous ulcers in terminal ileum and colon" and doctors thought its crohns .. I had colonoscopy because i had a perianal fistula. i didnt have any symptoms and biopsy report said chronic ileitis,chronic colitis but no granulomas and crypt structure is very good.. My doctor after looking at that report, said everything is fine and biopsy is normal.. I asked the doctor what are those ulcers.. She said it must be inflammation.. So i got tested for feacal calprotein, ACSA, pANCA, cANCA, ESR, CRP.. All these tests came back negative..Met my doctor yesterday and she requested me to do surgery for fistula.. And those infections on intestine could go off by itself, or may even become crohns later on.. Now, nothing is wrong with me and she cant find any markers to treat me with medication.. I never had any blood in stool though..
 
raggy73, hopefully you will soon get some answers.

CD is so very individual, my son never experienced diarrhea with his disease at diagnosis. The area of his active disease was in his terminal ileum at the ileocecal valve. His disease was severe at this location yet he didn't experience D or even blood in his stool before dx.

He did have abdominal pain but what drove us to look for medical help was actually mouth ulcers and a slight fever that would come on in the evening times. The fever would dissipate over night. It was while waiting for his scopes and other tests that other common CD symptoms cropped up like fatigue, weight loss, anemia.

Even now, he is on biologics on immune modulators he has active disease yet no outward symptoms of Crohn's like D or bleeding. He does have anemia and scopes have shown the inflammation so we know he is flaring. He just presents asymptomatically, right now any way.

Hopefully, your son has something easily resolved and done with like an infection. Please update us and feel free to ask any questions along the way.

Also, in the mean time of waiting if the abdominal pain gets bad it sometimes helps to switch to nutritional shakes like boost or ensure to give the bowels a rest. You might mention it to the GI if things don't improve quickly.
 
"multiple aphtous ulcers in terminal ileum" is exactly what it said on my sons initial colonoscopy report, the rest of the colon was normal, diagnosis on the report was ileitis. I'm really hoping against all hope its something other than crohns, your story has made me feel a bit better, thankyou
 
Thankyou Clash, it's really helping being able to talk to others in the same situation, I'm so worried, I've not slept properly for weeks, as a Mum you just want to make everything Ok and I can't.
 
I completely understand. My son was 15 when dxed. He is 19 now. The diagnosis is so overwhelming and it is such a steep learning curve. I truly hope the biopsies come back normal and it's not CD. The most important think is to keep pushing as long as there are symptoms.

A couple of tests you might considers since he does have ulcerations is a vitamin panel. Most nutrients are absorbed in that are of the small bowel so vitamin deficiency can occur with B12, D, and others. If he hasn't had his iron levels tested that can be helpful in determining if he might need an iron supplement.

Heating pads can help with the abdominal pain, especially at night when trying to sleep. We used the microwaveable kind instead of electrical. Warm baths can help too.
 
Just an update on my sons diagnosis, we've finally had the results of the colonoscopy biopsies and everything has come back clear, definately no colitis and definately no crohns. We're going for an appointment later this week to discuss the findings more thouroughly as he is still bleeding when passing a stool but I hope our story gives some reassurance to others with the same diagnosis that it doesn't always have to mean crohns disease
 
Oh I truly hope they can get to the bottom of his bleeding. I know you are relieved about the biopsy results.
 
I'll repost after we visit the Doctors and let you all know any findings, thankyou everyone for the support you've all offered over these past few weeks, its helped tremendously
 
It's not that uncommon to hear someone use ileitis, enteritis, regional ileitis, regional enteritis, etc..for a person with crohn's disease. Crohn's disease used to be called chronic intestinal enteritis, it translates like that in some languages too.
 
The words were used interchangeably more especially in the past. But ileitis means inflammation of the ileum that inflammation can be caused by things other than CD, such as infections and such.

It's like colitis, it means inflammation of the colon but can be Ulcerative colitis, crohns colitis, Ischemic colitis, microscopic colitis.
 
Wow, this sounds so similar to me. I've had many bouts with parasites and my colonoscopy showed ileitis but the doctor hasn't called it crohns. I've always had diarrhea even before the parasites.
 

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