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UP spread signs? Calprotectin.

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Ulcerative Colitis
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Posted 3/22/2021 11:58 AM (GMT 0)
Hi everyone, wishing you all well.

What would be the change in symptoms if your UP spread?

Can you get a high reading (1000) with Proctitis alone, or does this suggest spread?
Posted 3/22/2021 2:57 PM (GMT 0)
I've had 1600 with "severe" proctitis (assuming you're referring to calprotectin) - confirmed with sigmoidoscopy. Calpro is most sensitive to inflammation in the rectum. So, it doesn't tell you how far it might have spread. If your stools are still formed that's a sign that at least a good chunk of colon higher up is not inflamed. Otherwise I think symptoms are pretty individual and it's about learning to read your own body...
Posted 3/22/2021 5:13 PM (GMT 0)
The number seems high...what exactly are your son's symptoms? I assume he wouldn't have had the test without symptoms.

Is he still on oral and enema mesalamine?
q
Posted 3/22/2021 8:13 PM (GMT 0)
Hi Quincy, he’s flaring pretty bad the now. Going 3/4 times per day with blood most times. Still no pain and stool is mostly formed. He’s on oral, 3g per day and 3x suppositories per day. Bleeding not stopping this time 😕 think we are going to get another scope. Maybe need the enemas again, what you think ?
Posted 3/22/2021 9:29 PM (GMT 0)
Quincy will always advise using enemas 🤣🤣

3-4 x a day is not that much. I do that even in remission, and can go up to 20+ times in a bad flare. Formed stools indicate the inflammation is limited to the left side but hard to say how many cm....

You can have calprotectin in the thousands and still only a couple of cm of inflammation, it depends on the severity and location of the inflammation - if it's in the rectum and/or severe you'll get a higher number.
Posted 3/22/2021 9:39 PM (GMT 0)
Thanks, hopefully it’s still just in his rectum then. Looking forward to the scope.
Posted 3/23/2021 4:25 AM (GMT 0)
I would think, based on symptoms, limited in rectum, not left side. But he might have mild inflammation travelling higher...a c-scope (not sig-scope) is a good idea.
I do think 4g enemas twice daily would be good. OR...You could ask the GI to try him on a steroid foam during the day and mesalamine at night.

What oral mesalamine is your son on? It could be increased...wasn't he on a higher dosge in the past?

It's good he's not having any pain...

q
Posted 3/23/2021 7:08 AM (GMT 0)
He is still on the 3 gram oral but it hasn’t done much to stop the bleeding.

I am thinking rectal inflammation that won’t settle down. After the scope we are going to review the treatment plan, I think it will be enemas or a steroid.

Yes, no pain and still very active so that’s a positive however, still 100% in a flare.
Posted 3/23/2021 6:04 PM (GMT 0)
It's definitely interesting no pain. But any discomfort during bms?

When is his scope?
q
Posted 3/23/2021 8:30 PM (GMT 0)

quincy said...
I would think, based on symptoms, limited in rectum, not left side. But he might have mild inflammation travelling higher...a c-scope (not sig-scope) is a good idea.
I do think 4g enemas twice daily would be good. OR...You could ask the GI to try him on a steroid foam during the day and mesalamine at night.

What oral mesalamine is your son on? It could be increased...wasn't he on a higher dosge in the past?

It's good he's not having any pain...

q


I consider the rectum to be part of the left side (if that wasn't clear)
Posted 3/23/2021 9:30 PM (GMT 0)
Not got a date yet Quincy however, I think within the next month or so.

He has never had the pain even pre diagnosis but the scope showed definite mild inflammation both as proctitis and at the cecal.

I am emotionally ok with it now, just want to get to a remission again. His stools are all formed so I am hopeful it’s still localised. Today for instance it’s evening time now and he’s only been twice to the toilet.

Maybe time for a steroid enema or something, who knows.
Posted 3/24/2021 4:20 AM (GMT 0)
Good his scope will be soon. I think the steroid enema would be good as an addition.
I do think he's doing pretty good, and hopefully with time and increased meds, he will get into a more solid remission.

q
Posted 3/24/2021 12:03 PM (GMT 0)
Good Quincy but surely the ongoing bleeding isn’t good
Posted 3/24/2021 6:46 PM (GMT 0)
It's not, but the scope and biopsies will determine its severity and limitation. Ask the GI to take pics from the scope for you to see and understand what it looks like. There are rectal options...and your son is functioning well which is good at this point.

Let us know when he gets his scope.

q
Posted 3/24/2021 10:39 PM (GMT 0)
Thanks Quincy, scope confirmed for a few weeks. Strange, only bad one toilet trip today and be said there was no blood. Sometimes I give up.

Actually looking forward to getting some clarity and will ask for pics and keep you updated.

Stay safe
Posted 3/24/2021 11:32 PM (GMT 0)
One other thing - has he taken any ibuprofen (or other nsaid) recently? That can inflate the calprotectin value...
Posted 3/25/2021 12:05 AM (GMT 0)
Maybe the increased supps are doing their thing. I suggest sticking with it till the scope for sure.

He should have another calprotectin test done to see if there is consistency regarding decreasing numbers and if it matches to healing.

Looking forward to your update. You too keep well.

q
Posted 4/6/2021 10:25 AM (GMT 0)
My son is in for his colonscopy on Friday afternoon, we go in Thursday for the bowel prep. Hate it, and a bit upset but I know its for the best. Looking forward for the results and hopefully a better treatment plan so stop the bleeding. Symptoms thankfully still mild with 1/2 toilet trips per day.
Posted 4/6/2021 5:16 PM (GMT 0)
Great your son's scope is soon on this Friday!
Where is he going for the prep?

q
Posted 4/6/2021 6:32 PM (GMT 0)
He’s going into the hospital for the prep. I go with him, we are staying the night, this Thursday.
Posted 4/7/2021 4:42 AM (GMT 0)
Convenient process for him.
Let me know the outcome of the scope.

q
Posted 4/9/2021 4:11 PM (GMT 0)
My sons proctitis is now sort off left sided colitis, almost 60cm?

It was quite inflamed so the doctor has gave him a 4 week course of steroids and continued other meds. If that does not work he’s mentioned azathioprine on a low dose as a background maintenance.

I am hopeful it does not come to that.

All in things have got a bit worse when examined but they also said it’s certainly not terrible. Feel a bit down but at the same time glad he’s being treated.
Posted 4/9/2021 5:24 PM (GMT 0)
Hi...thanks for the update.
Your son's inflammation upward must be extremely mild considering his symptoms ...which is a good thing.
The biopsies will determine how mild and if it's beyond.

I would have thought the steroid enemas as a first choice, but hopefully the systemic will do its thing more quickly.

Is he slated for another scope to check?

q
Posted 4/9/2021 7:42 PM (GMT 0)
They didn’t mention another scope, I hope not for a while as he really didn’t enjoy the whole thing. Hopefully the steroids do the trick and we can calm things down as they where before. Still a bit upsetting but we will get there. Do the biopsies determine the inflammation levels ? It looked pretty red in the pictures
Posted 4/9/2021 11:20 PM (GMT 0)
Yes...biopsies will confirm severity, inactive or active inflammation, changes in cellular architectural changes., etc. I suggest you get a copy of the results for your records, research and any questions you might have.

What steroid is he going to be on? Will he be increasing to the mesalamine enemas?

Please keep us updated on how he is doing.

q
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