Resection and some history

[Pangolin]

My son, now 12, had an ileocecal resection last week to remove a stubborn, inflamed stricture at the ileocecal valve. Recovery has been surprisingly fast so far, and he's feeling pretty good. The surgery went very smoothly, and less than 6 inches was removed. The rest of the intestines looked good, so hopefully this puts him into a deep remission.

The stricture was there since he was diagnosed in 2017 and probably long before. I believe the ileocecal valve had been causing him problems since birth and may even have been the original cause of Crohn’s in his case.

When he was first diagnosed, he was treated with Remicade, which had some temporary effect on symptoms but was otherwise not helpful. More recently he was on Entyvio, which also had some effect on symptoms but overall didn't do much.

Neither biologic was able to induce mucosal healing or improve the stricture, and Remicade in particular caused troubling side-effects. In both cases, when he went off the biologic he experienced a week or two of lower esophageal pain and nausea as a withdrawal or rebound effect resulting from the recovery of the immune system after drug levels became low enough. Be aware of this when stopping these drugs--it's easy to confuse with a disease flare.

EEN was highly effective at mitigating problems resulting from the stricture and keeping symptoms relatively under control. EEN completely healed his large intestine but unfortunately could not heal the stricture itself. Without EEN, everything would have spiraled out of control, and he would have lost much more than just 4-6 inches of his ileum.

Hopefully we'll be able to prevent recurrence and avoid any further Crohn’s problems now.

 

[my little penguin]

So glad your kiddo is improving fast
Sounds like he had scar tissue for his stricture which no biologics or any other med or een can fix
Did they say it was scar tissue ?

weird side effects and withdrawal from biologics are not something Ds has ever had
He has been on remicade
Break them humira
Break from humira for almost 2 months and now Stelara
Never had any withdrawal
He had true flare symptoms when stopped including high fecal cal as expected

Even when he stopped another biologic for another auto inflammatory condition never had throat/nausea as withdrawal symptoms

did they say what they plan to keep him on to keeping the crohns calm after surgery ?

 

[Pangolin]

I actually asked the surgeon if it looked like scar tissue, but at that time I didn't get a clear answer. Perhaps there will be a pathology report I'll see later.

Prevention of recurrence is of course a big issue, and for now while he's healing he's on metronidazole and EEN. Just before the surgery he had a couple of weeks of the semi-elemental Peptamen Jr through a tube, and that substantially reduced inflammation even more than polymeric formula did. He'll be getting the tube out and switching to a normal diet soon, but we want to be really careful about diet for now. It may make sense to continue on partial EN for a while. However, I'm hopeful that the root cause of all this has already been taken care of in his case.

 

[my little penguin]

So I am confused
Reoccurrence with inflammation/new strictures is high in kids who already have had a strictures.
It moves the crohns to a severe category
Most kids have inflammation for 10 years before the body starts switching to strictures
Cutting it out doesn’t stop the crohns from coming back .
The root cause is crohns which hasn’t gone away .

 

[Pangolin]

I know, recurrence is common. But in order to understand recurrence we also have to understand what Crohn's is and what causes it.

Crohn's is characterized by persistent inflammation in the gastrointestinal tract, most commonly at the terminal ileum. What is inflammation and why does it happen? The short version is that inflammation is a response to objects or molecules identified by the body as foreign. Due to a variety of studies, we know that Crohn’s is not an autoimmune disease and that it does require the presence of foreign material.

But normally foreign material passes through the gastrointestinal tract without becoming exposed to the immune system and causing inflammation. So what's going on in Crohn’s patients? Here are three possibilities:

1. The immune system of Crohn’s patients is excessively responding to normal antigens, resulting in inflammation

2. The guts of Crohn’s patients are allowing unusual quantities of antigens into the tissues, resulting in inflammation

3. The immune system of Crohn’s patients is deficient and inadequately clearing infections, resulting in inflammation

Some Crohn’s patients may have mostly situation 1 going on, while others may have situation 2 or 3. Surgery is not going to fix the problem if your immune function is the problem. However, if your problem is #2, surgery might actually fix your problem, depending on what caused the gut to have such a defect in the first place. Note that no particular scenario has yet been proven to be the underlying etiology in a group of Crohn’s patients.

In situation 2, damage to gut tissues precedes inflammation (which then causes more damage and more inflammation, etc). There is some support for this hypothesis in papers and debates on "early surgery". Patients who have surgery earlier actually tend to have better long-term results, implying that stopping the damage process early prevents further damage from happening. I have also seen reports of Crohn’s resulting from physical damage to intestines such as after a car accident. I believe that certain dietary components (especially oxidized oils in fried foods) may also damage the terminal ileum region. Some infections may also cause damage to the ileum. Impaired flow through a region of intestine could also result in damage and inflammation.

In my son's case, I believe based on close observation and family history that some problem at the ileocecal valve was present at birth. I suspect that impaired flow at that valve is what started the Crohn’s process in his case.

So, I'm hopeful that the root cause has been corrected in my son's case, but of course there are other possibilities and I don't claim that anything is certain.

 

[pdx]

Glad that recovery is going well!

 

[WindingRs]

I am so happy the surgery went well. Hope he recovers very quickly, and this puts him on remission.

 

[my little penguin]

Recent Advance in Very Early Onset Inflammatory Bowel Disease

Recent studies on pediatric inflammatory bowel disease (IBD) have revealed that early-onset IBD has distinct phenotypic differences compared with adult-onset IBD. In particular, very early-onset IBD (VEO-IBD) differs in many aspects, including the disease ...

www.ncbi.nlm.nih.gov

And

Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Program | Children's Hospital of Philadelphia

At the VEO-IBD Program at CHOP, our gastroenterologists, immunologists and geneticists use cutting edge technologies to find targeted treatments for children with very early onset IBD.

www.chop.edu

If your child has veo ibd that would explain not responding to biologics or other traditional ibd meds
Studies for adults or even kids 15-25 -traditional ages for crohns onset due to increased peyers patch cells don’t apply to infants or little kids dx with crohns

in order to stay ahead of the disease a lot of these out of the box type of kids see specialists who see nothing but the youngest of the young .

chop has an excellent veo ibd program that looks at genetics /immunology /Gi and pools all the known data for kiddos dx before age 8 it’s part of large nih study

Which may explain some of the difference your seeing with your son versus the average adult or teen ibd patient

Ds takes part in the chop veo ibd study
Well worth it imo
Even from far away

 

[Pangolin]

Thanks MLP. A little more detail on the VEO aspect of his case: I believe the intestinal issues started literally at birth, before inflammation even set in. He basically did not want to eat as a baby. We managed to deal with it, but it was only in hindsight and other kids that it became obvious that that wasn't normal. At 14 months old he really stopped consuming anything for a while, and fortunately we managed to get him to try Pediasure, which he finally guzzled. I think what happened then is that he began unintentionally self-treating his Crohn's (I think the inflammation may have started by then) with EEN, essentially. This kept everything under control for a number of years, until we finally managed to get him to have other foods (oops).

Anyway, what I'm hoping is that the problems all started at birth with a fixable anatomical issue rather than some other unfixable issue. Could be either!

Edit: Not sure the VEO people would want to see him since we have no solid evidence before age 9, though. When we tell doctors we think this started at birth they just brush it off.

 

[Clash]

Your child's disease progression after diagnosis sound so eerily similar to my son's journey but my son was a bit older.

At the ileocecal valve and just beyond is where my son's disease eventually required sx. All other areas with visible or pathological evidence of CD were treated by meds and or partial EN.

My son started stelara after sx and had a G tube placed for EN/partial EN.

The anastomosis site has shown first histopathological evidence then endoscopic evidence of inflammation after surgery.

My son is asymptomatic and the stelara has kept the CD at bay in other areas but CD remains active at the surgical site. We are thankful for the Stelara working as well as it has and Im hopeful something will eventually come along that can knock out that one area.

I hope for great outcomes for your son!

 

[Pangolin]

Ugh I'm sorry to hear it came back at the anastomosis. All too common! Why does it go away everywhere else yet persist or come back at that one spot? Such a mystery.

Stelara would be the next biologic on the list to try if needed...