HealingWell
Search Close Search
☰

How is ileitis diagnosed? Few other questions...

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/24/2017 12:17 AM (GMT 0)
I just spoke with an 'IBD Specialist' to get a second opinion from my most current GI doctor, who had suggested that my diagnosis change from UC to CD.

The reason he felt this way was because I had an abscess drained, a fistulotomy and an MRI showed activity in my terminal ileum.

The IBD specialist said that this would not be present in UC. I asked her why this had never been diagnosed in the past and she said COLONOSCOPIES NEVER REVEAL ILEAL ACTIVITY. She said the scope does not go that far up to the small intestine. Is this accurate?

She also suggested that I've had fibrotic ileitis for "years" because I was given Budesonide about 4 years ago to address a flare. She said my GI (who I believe saw what he called "cecal backwash") would not have given me that type of steroid to treat UC. The thing is: after I went into remission from that flare, he did a CT scan and a scope and said the result was "night and day" and ruled out CD.

So now I've got an IBD specialist who works with my GI telling me that I have CD and need to start Remicade + Imuran to avoid any future fistulas or other CD related issues. I'm so utterly confused, because I'm not exhibiting any physical symptoms. She said the imaging and the fact that I had a fistula is enough for her to conclude that I have fistulizing Crohn's, regardless of how I currently feel. Does this seem drastic to anyone else? I feel like I'm being caught so off guard by all this and don't know what to do...
Posted 5/24/2017 2:14 AM (GMT 0)
I just don't understand how someone can change my diagnosis based on this information...I don't know what this means for my future
Posted 5/24/2017 3:04 AM (GMT 0)
Colonoscopies can and usually do show the terminal ileum, and allow for biopsies of the terminal ileum.

https://www.ncbi.nlm.nih.gov/pubmed/14686723

Though that makes me wonder if your doctor ever attempted to enter your ileum during past colonoscopies... confused

A fistula is very suspicious for Crohn's Disease. Next time you are flaring, I would highly recommend a pill cam.
Posted 5/24/2017 3:13 AM (GMT 0)
The specialist suggested I've had the ileitis "for years" if it's only now being noticed via imaging. I would think you're right that the ileum has never been looked at in scopes before - despite your link, it doesn't seem to be common practice.

I guess this means I don't have UC anymore? Maybe I never did?
Posted 5/24/2017 3:29 AM (GMT 0)
My GI told me that the trick was to try to flap/flip the tip of the c-scope to get a peek into the ileum. But he also said that this increases risk of perforation to be flapping the tip of the scope like that.

maybe some clinics do not try to peek into ileum

it would be a situation of you diagnosis changing, not of no longer having UC, bot more of it always having been CD
Posted 5/24/2017 3:33 AM (GMT 0)
Yeah, that's what it seems like. The thing is, though: I was dx'd with UC 12 years before the abscess or anything being noticed in my ileum. Mesalamine DID work for me, symptomatically this whole time (and still does). Wouldn't you think something would have happened before this abscess?

Also: I can't imagine how much damage must have been done to the ileum at this point if it's been there the whole time...is that a valid concern?
Posted 5/24/2017 4:34 AM (GMT 0)
Yikes this is really messing me up
Posted 5/24/2017 4:49 AM (GMT 0)
Both my colonoscopies had successful ileoscopy. Usually if they don't enter your ileum, it is because they can't due to swelling or possibly anatomy, whatever. I do think it is standard procedure if you have IBD or suspected IBD.

If you are flaring, you could have a pill cam to get a view of your whole small bowel.

If you had extensive damage from untreated Crohn's, it would likely have shown up on your MRE (though not necessarily), if that gives you any peace of mind.

I would make sure that whoever does your next colonoscopy does ileoscopy as part of the procedure, with biopsies.
Posted 5/24/2017 5:00 AM (GMT 0)
you were diagnosed with "suspected Crohn's Ileocolitis" - what did they do to treat that? did your diagnosis change back to UC?
Posted 5/24/2017 5:35 AM (GMT 0)
Some notes/thoughts:

Doctors doing a colonoscopy are more likely to go into the TI if the patient has known Crohn's or Crohn's is suspected. If the patient has UC or the scope is for cancer screening of a non-IBD patient, they may not go into the TI because of time issues and small increase in risks.

If they do go into the TI, it's only a couple of inches. If disease is truly at the terminal part of the terminal ileum, it can be seen and biopsies. If the disease is more than 2 or 3 inches from the ileocecal valve, it can be out of reach of standard colonoscopy (there are specialized procedures that can go somewhat farther into the small bowel, but not all GIs can do them).
Posted 5/24/2017 5:35 AM (GMT 0)
My first diagnosis was Crohn's so it didn't change "back." They just gave me prednisone for that to get me through until my colonoscopy 3 weeks later. At that point, my ileum was healed. My doctor said she changed the diagnosis based on the fact that my colitis was continuous rather than patchy. For my full story on that, you can read this thread: https://www.healingwell.com/community/default.aspx?f=17&m=3819828&p=2

The only new event since that thread is that my doctor attributed my persistent B-12 deficiency (despite injections) to backwash ileitis. You know, the ileitis she insisted at my last appt never existed ;)

So yeah. I might have Crohn's. I might not. I've just sort of accepted it, as it doesn't make a huge difference at this point in terms of treatment. There's a good chance I will switch doctors somewhere down the line. You will see after reading the thread I linked above that I've gotten much more "zen" about that whole thing.
Posted 5/24/2017 5:41 AM (GMT 0)
Well, noodles, it *Does* make a difference in terms of treatment, regardless of what the UC'ers here say. Mesalamines are not going to prevent a fistula or abscess or stricturing of the TI, etc - things that Crohnies have to worry about that UC'ers don't.
Posted 5/24/2017 5:48 AM (GMT 0)
Beave, I'm sorry - I should clarify - it doesn't make a difference for ME at this juncture. My doctor is vehemently against immunomodulators and biologics, so... my treatment likely wouldn't be much different at this moment. Especially since I'm starting Entocort now.
Posted 5/24/2017 5:55 AM (GMT 0)
I remember you're in a rather odd/unique situation with your doctor.

Mesalamines being used in Crohn's issue is a dead horse I can't resist beating now and then. You'll have to forgive me if I seem repetitive and/or annoying about it. smile
Posted 5/24/2017 6:07 AM (GMT 0)
Haha, your phrasing of the situation with my doctor is so kind. Don't worry - it won't offend me to say it like it is - she's not a good IBD doctor =p But yes, weird situation - trying to be strategic about when/how I switch away from her.

I started seeing major improvement about a week into Apriso, so I don't have much of a leg to stand to argue with her on that choice. Maybe that means I have UC, maybe not. I figure time will tell.

sfc, can you post the results of your CTE (copy and paste from the report) here? If you don't have the report, definitely get it for your records.
Posted 5/24/2017 1:20 PM (GMT 0)
UC pancolitis patients can have ileum-backwash, and that's not unusual. Backwash creates a small amount of inflammation in the ileum. I'd just verify that was ruled out.

You can get a small-bowel follow through, drink some contrasting dye and have imaging done to see if there's any small intestinal involvement.

You can get the relatively new prometheus labs ibd sgi blood test. www.prometheuslabs.com/Resources/IBDDiagnostic/IBDsgi-ProductDetailDX13005-0113.pdf

In another post, you and I had talked about Imuran in depth, so I won't bark up that tree again. I assume you find remicade to be equally extreme... I'd try not to eliminate multiple classes of IBD meds from your treatment path, as you might need them some day.
Posted 5/24/2017 5:25 PM (GMT 0)
It sounds like I need them ASAP iPoop. I had trouble sleeping last night with this on my mind. Meanwhile I still feel symptomatically fine.
✚ New Topic ✚ Reply