• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Happy but confused

My 12 yr old had scopes, blood tests and pillcam last month, as he hasn't had a big full scope checkup done for over a year. The nurse just called and said there is no sign of Crohn's and everything is normal! I'm waiting for a call back from our doctor (who is a respected and very experienced Professor of Gastroenterology at the children's hospital) as he has recommended to stop all meds (6mp and Allopurinol) and monitor with 3 monthly blood tests and calprotectin. My son is very healthy and growing so something has worked!
We have been slowing decreasing his dose from 1/2 tab daily to alternating 1/2/1/4 and now 1/4 tab daily.

My question is can one stay in remission without maintenance meds, (we've kind of been tapering off over the past 18 months) and can one be in full remission with no symptoms at all? He was diagnosed at 9 with his symptoms being lethargy, anemia, not absorbing any nutrients, losing blood, eye and joint issues, calprotectin of 1700, and scattered ulcers etc throughout his small bowel. He didn't have alot of cramping or pain.

Would love some advice, thank you x
 

my little penguin

Moderator
Staff member
Typically our Gi is of the mind if it's not broken don't try to fix it.
It's seems like the med is working hence the good scope
So pulling the meds could result in uncontrolled inflammation that may not respond as well to the same med the second time around.

Pagin Dusty
Her kids have both been on 6-mp for years in remission .
 

Tesscorm

Moderator
Staff member
Hooray on clean scopes! :D

But, I'm with MLP... seems odd to take away maintenance meds??? At one time, pre-crohns, he was free of all inflammation and then crohns popped up in this 'clear/normal' environment and started all the problems. Isn't that basically where he is today? ie Inflammation free?? So, with no maintenance meds, what's to stop a repeat of the past? ie crohns popping back up and causing inflammation, etc.?

I imagine he's concerned about med risks?? But, can you ask him how many patients has he treated in this way (ie eliminating maintenance meds) and how successful has it been? What have been his experiences in reachieving remission if inflammation returned?
 
Our GI has told us that he will not recommend his kids coming off medication under his care as he feels that if they're going to flare it will be in puberty and it's really hard to get them back under control when their hormones are all over the place and any height lost is permanent if they don't wrestle it into remission in time. He says once R transitions to adult care then he can talk to adult GI about coming off meds. Of course we have to get him into remission first
 

my little penguin

Moderator
Staff member
Let's put it this way
DS was in remission per scopes /Mre/bloodwork in feburary
We stopped meds due to a minor ear infection ( pretty standard ) but then DS got the flu etc.... So what should have been a short stoppage ( few days )turned into a few weeks/almost a month due to bad luck and elementary school standard illness.
This allowed his Gi tract to flare (10-12 BM a day ) and joints to swell( hands , wrists and knees)
He is now on the original meds plus pred and EEN .
So I highly recommend you have a very long talk with your Gi
 

Catherine

Moderator
Couple of questions for you.

What is the calprotection level? Is showing under normal eg under 50.

This was Sarah's GI initial plan for her. But although she has appeared to be in clinical remission she has flare a couple of times according to calprotectin. So instead of decrease medications she has been increasing.

There is a believe with some GI there is a small group of patients who will only ever flare once, and their is no way of telling who these patients are without stopping medications.

Sarah still has the dream of stopping medication, she is adult now. Her GI plan is if she want to do this, is that would prefer her to have a normal colonscopy and calprotectin of under 50 for at least 12 months.

No matter what you and the GI decide just remember, that no meds requires just as monitoring for signs of disease returning if not more. Have a clear plan for what signs you would use for restarting meds. Calprotection over 100 or 50 for example.
 
...but isn't he in remission because of the meds??

After resection surgery, DS was med free for two months before having a full on flare with his worst labs ever. In our case, I'm convinced maintenance meds are needed until a cure comes along, especially for a kid who still has a lot of growing to do.

Good luck!
 
That's great the scopes are clear. Hope he stays in remission without the meds. I'm sure it must be possible.
 
That's great about the clear scopes.
I would question the no maintenance meds also.
However, theirs a part of me that wishes we could try that someday. So I'm a hypocrite :D

Whatever you choose please keep us updated.

hugs
 

Catherine

Moderator
...but isn't he in remission because of the meds??

After resection surgery, DS was med free for two months before having a full on flare with his worst labs ever. In our case, I'm convinced maintenance meds are needed until a cure comes along, especially for a kid who still has a lot of growing to do.

Good luck!
According what I have told once you have had surgery, you are not candidate to try going of medications even with clear tests.
 
Top