Tethered ileum?

[kernelmom3]

DS just had an MRE yesterday to see if his fistula is gone and he can space his Remicade infusions from every 4 weeks back to every 8 weeks like they had been (he had an abscess and fistula in January and had a drain for two months).

The results can’t definitively say it’s gone and showed “tethering of the terminal ileum to the sigmoid colon” which his GI thinks is why there was a perforation when they did his scope a few years ago. He recommends another endoscopy to see if he should continue on the high dose of Remicade or “switch to another agent”. Anyone have experience with “tethering”? Does that mean adhesions or strictures? He also has mild inflammation of the ileum so I’m VERY hesitant to have him scoped right now.

Any thoughts, advice, experience is much appreciated as always!

 

[Maya142]

I haven't heard of tethering before. He's had surgery before, right? So maybe it's adhesions or some sort of scar tissue?

In terms of inflammation, we have scoped many times with mild to moderate inflammation and have been fine. But if your son's anatomy puts him at a higher risk for perforation, I'd discuss with his GI what the risks vs. benefits are and what can be done to mitigate those risks - maybe using a pediatric or very small scope?

I'm going to tag some parents to see if they have ideas:
crohnsinct
my little penguin
pdx
kimmidwife

 

[kernelmom3]

Thanks for your reply! I spoke with his GI and he said because of the tethering to the sigmoid colon there is a greater risk of perforation. He said DS is on the highest dose of Remicade and there is still active inflammation so he may want to switch him to Stelara BUT...since we don’t have a “smoking gun” the insurance may not approve it. In other words, DS may have to have a colonoscopy to further prove he’s failing Remicade!

I asked him about a possible elective resection and he said he would present his case at the monthly meeting with the surgical team (where DD’s case is already being presented!).

Anyone have experience going off Remicade to another biologic? I did ask about a steroid bridge but we didn’t get into it too much.

 

[my little penguin]

What about a capsule endoscopy (pill cam)?
Is that less of a risk ???
Ds switched from remicade to humira (allergic reaction to remicade ) so no bridge (that was a bad idea )
Then 5 years later switched from humira to Stelara
With 6 months of steroid /een for part of it
That was tough but things are better once Stelara kicked in

Good luck

 

[crohnsinct]

You poor thing! Two kids having trouble at the same time?! I am so sorry you are having to make these decisions.

As for your son, I would be hesitant to switch now because if I read your first post correctly they are not sure Remicade isn't working right?! The fistula could have heeled? Am I understanding this correctly? Does he have other symptoms?

As for colonoscopy, my daughter has been dealing with some pretty severe inflammation. Her GI sent her to a GI who specializes in endoscopy (advanced training, director of endoscopy unit blah blah blah). When he did my daughters colonoscopy he said as soon as he went in he saw how severe things were and he feared perforation so he used water to dilate the colon rather than air as water is gentler. Idk if this would work in your sons case but worth asking about.

My daughter recently switched from Remicade to Entyvio. The wait for a new biological to kick in is painful but doable with bridge therapy (EEN or steroids). My biggest concern with switching would be how successful are the other agents with closing fistula? I know the anti tnfs have the best record. Did GI say why he wouldn't go to humira next? Our GI also didn't choose another anti tnf. He said because he felt O's body unregulated other inflammatory processes.

Good luck! Hugs during this difficult time! Keep us posted.

 

[Maya142]

A pill cam is a great idea!! But if not, I would consider going to a bigger hospital that has someone who specializes in scopes or does a lot of scopes. Our GI also sent us to a GI who does IBD endoscopies all the time. She actually gave us names of three doctors in the IBD clinic whom she wanted to scope my daughter.
I'm not sure I'm remembering correctly, but are you in NJ? Because if so, I would recommend CHOP. We had a great experience there and they have a large and very experienced IBD team. They also do a lot of IBD research.

 

[Guerrero]

DS just had an MRE yesterday to see if his fistula is gone and he can space his Remicade infusions from every 4 weeks back to every 8 weeks like they had been (he had an abscess and fistula in January and had a drain for two months).

The results can’t definitively say it’s gone and showed “tethering of the terminal ileum to the sigmoid colon” which his GI thinks is why there was a perforation when they did his scope a few years ago. He recommends another endoscopy to see if he should continue on the high dose of Remicade or “switch to another agent”. Anyone have experience with “tethering”? Does that mean adhesions or strictures? He also has mild inflammation of the ileum so I’m VERY hesitant to have him scoped right now.

Any thoughts, advice, experience is much appreciated as always!

I think tethering may mean there is a fistula going from the terminal ileum to the sigmoid colon... or an adherence between the two... that’s how i’d understand that, but of course ask the gi to explain better. If there is a fistula between the ileum and the colon, there could be an indication for surgery.

Why would he recommend another endoscopy? He not sure about the result of this MRE and want another exam to confirm it?