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Terminal ileitis + indeterminate calprotectin

L

Lessa

Hello, everyone

Well, i have symptoms since last year (April). I used to be a veeeery constipated person, who needed to take fibers and other stuff to help me have bowel movements.
Then I suddenly started going to the bathroom daily, 2-3 times and also had abdominal cramps very often. Found out that i was lactose intolerance, cut the lactose out but the symptoms are still here. Also always had anal symptoms (like pain while passing the stool).

So i had a colonoscopy which showed "moderate erosive terminal ileitis". Also had a faecal calprotectin of 100 (which stays in the "grey zone"). Recently I found out i had distal proctitis too (inflammation in the anus), and i have been using mesalazine suppositories for 15 days.

The point is: I'm seeing a GI and a coloproctologist. The GI believes it's an early crohn, but the coloproctologist is not so sure about it because my proctitis got better with only 15 days of mesalazine (she says that inflammatory proctitis usually takes longer to get better).
So she wants to wait longer and repeat the exams before saying " it's crohn!"
I completely understand her and I truly wished it was just IBS, however when i put all the pieces together it just seems too much like crohn.

Anyway, my point is:
- does any of you know someone who has been diagnosed with a calprotectin level < 200?
- also, does any of you know or have gone thru a proctitis that healed fast?

Sorry for the long post and sorry for any English mistakes (it's not my first language). Thank you 😁
 
GI Jane

GI Jane

I have erosive terminal ileitis along with other conditions. IBS and Crohn's are so similar with the symptoms. It's just picking up the pieces and making the game plan of attack. I wish you luck for a good diagnosis.
 
L

Lessa

eleanor_rigby said:
I have Crohn's disease with inflammation and ulcers in my terminal ileum. Over the past year my FC results have been:
65, 70, 60, 142, 72
I am in a chronic flare.
Click to expand...
Oh, it kinda looks like my case. What symptoms did you have? (were they mild or strong?).
I'm also reluctant about it because i feel my symptoms are mild compared to the other cases I've seen/read.
 
E

eleanor_rigby

Location
Cheshire, England, United Kingdom
My symptoms vary. Right now I'm sat on a train and feel completely normal. I never get diahorrea or blood in my stool. My BMs are generally pretty normal (probably why it took me 10 years to get a diagnosis). I never have nausea or vomit. My symptoms are solely pain related. Most of the time I feel either OK or I have discomfort like trapped gas type pains. Sometimes I get twinge type pain in my lower right quadrant. Sometimes I feel fatigued if I am walking for extensive periods of time.
I have had two incidents of terrible pain since April 2016 which was like horrific contractions/cramps. I think these were like a type of obstruction type thing.

I know of people who have NO symptoms whatsoever but needed surgery because of the damage Crohn's did to their bowel. This is why symptoms alone should not determine a diagnosis/treatment.
 
L

lacey2

In response to Lissa post: Gosh, my calprotectin tests come back at 400+ always. But, I'm considered normal! All the symptoms of crohn's but, no confirmation thru the colonoscopy, so, I'm stuck! Sounds like you are in good hands though. Good Luck!
 
Jabee

Jabee

I get so weary of hearing that crohn's (any illness, really) "usually" does this or that. I was diagnosed with celiac disease years ago (biopsy and antibodies as well as an excellent response to a gluten free diet), yet that was questioned last year when I got a second opinion about my crohn's pain from another GI. I didn't present with the "usual" symptoms (diarrhea). Rather, I was in constant severe pain. My Mom had giant cell arteritis a few years ago, and the ER doc said that 50% of people who have it don't present with the "usual" symptoms. We're all different and diseases can affect us differently.
 
GI Jane

GI Jane

I like when they say you're looking like you feel better just because you got dressed in something besides yoga pants. Because I dressed appropriately for my appt instead of for comfort it must mean I'm all better....ya
 
Jabee

Jabee

Exactly! I also love it when they "forget" to inform you about test results that are way out of whack (low blood counts, pancreatic enzymes). For a awhile I had a neurologist who never looked at me during my appointment. He just typed into the computer. I should have asked him if he were treating the computer instead of me!
 
GI Jane

GI Jane

Jabee said:
Exactly! I also love it when they "forget" to inform you about test results that are way out of whack (low blood counts, pancreatic enzymes). For a awhile I had a neurologist who never looked at me during my appointment. He just typed into the computer. I should have asked him if he were treating the computer instead of me!
Click to expand...
OMG so true. I looked at my blood work after they said it was good because my c-reactive protein was better. Found out my Thyroid was going bad and they didn't notice. I had to make the appt to find out what is up with that won't until the 6th.

I had a dr that did a lot of typing too. My current one is good thought I like her. I'd find another one.
 
L

lacey2

GI Jane said:
I like when they say you're looking like you feel better just because you got dressed in something besides yoga pants. Because I dressed appropriately for my appt instead of for comfort it must mean I'm all better....ya
Click to expand...
Yes, and they say "For a person who says they are unwell, you certainly do not look ill!""
 
GI Jane

GI Jane

lacey2 said:
Yes, and they say "For a person who says they are unwell, you certainly do not look ill!""
Click to expand...
It so frustrating so we should wear old pajamas and moan all the time. Don't they realize how much effort it is to try to hold it together and not just crawl under the covers and say nope not dealing with today.....ggrrrr:voodoo:
 
Jabee

Jabee

I actually ditched that neurologist and now see a really terrific neurologist who gets migraines herself so she really understands how much they debilitate me (and anyone who gets them!) I was looking over my test results a few days ago and found I was severely anemic several times (I already take iron, of course) and my doctors "forgot" to mention it. Currently my GP and my GI both want each other to handle my long term issues. Seriously?
 
GI Jane

GI Jane

Jabee said:
I actually ditched that neurologist and now see a really terrific neurologist who gets migraines herself so she really understands how much they debilitate me (and anyone who gets them!) I was looking over my test results a few days ago and found I was severely anemic several times (I already take iron, of course) and my doctors "forgot" to mention it. Currently my GP and my GI both want each other to handle my long term issues. Seriously?
Click to expand...
I know right....if it's not something exciting they are bored with your case.
 
L

Lessa

Hi, everyone! Sorry for never replying, but thank you very much for all the answers. I was busy with life and stuff.
Anyway, my case got closed and I'm unfortunately part of the team now =(
I was really diagnosed with crohn's. But my case is very mild, luckily
Thanks again for the help!
 
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