As long as there are no issues with strictures or tight spots from adhesions, it should be OK. It would not damage anything as it moves through. The only real risk is getting stuck in a tight spot, requiring surgery to remove.

Jan

Thanks for quick response. As far as I know he does not have adhesions, but the "real risk" about getting stuck is kind of nerve-racking!

I presume he's done all the "zero risk" diagnostics without finding anything meaningful. I also presume they need to rule out small bowel Crohn's before entertaining a pouch advancement surgery. Capsule endoscopy has revealed Crohn's lesions that all other methods have not, so it can be a very useful tool.

But, yeah, nerve wracking to say the least, especially when it is your kid! Much easier to make these decisions for yourself. I think it is reasonable to just want your son to be able to live a normal kid life without having to deal with pain and disability. He is lucky to have you take on the worry for him!

Jan

I refused the capsule endoscopy a few years ago as I was warned there is a risk of the capsule getting hung up in strictured areas. Since that time they are making the capsules smaller. It used to be an elephant capsule that you were certain you would choke on. In any event I passed on doing this test, and I would still pass on doing it because the neoterminal ileum at the juncture with my J Pouch inlet is strictured.

MRI and CT Enterographies are diagnostic tests that essentially accomplish the same objective and are safer, although diagnostically are not considered quite as good a tool as the capsule endoscopy.

Since April 4 takedown he has had 3 pouchoscopies and a pouchogram. (An integrative dr has given him the Geneva Lab stool tests and we are waiting for those results) Per Dr. Shen's advice to our GI he is also going to have an MRI to look for a leak around the cuff. Before the GI starts to treat with systemic drugs to get cuffitis into remission she wants to check for crohns. He had same test a year ago and no crohns showed, but doing with J pouch sounds risky. Have there been any reported inciddences of the capsule actually getting stuck? We are not going to try advancement surgery (yet) because there is a 15% chance it cannot work. Thank you.

quote:

Have there been any reported inciddences of the capsule actually getting stuck?

Yes, it is a possible complication and if it happens surgery may be needed to remove it. This is why I rejected the capsule endoscopy in favor of doing the MRI Enterography.

As I noted above, since I rejected the procedure the technology has improved and the capsules are made smaller now, thereby reducing the chance that this will happen. Ask the Doctor what the % chance is that the capsule gets hung up, and what the plan would be if it does get hung up.

Thank you. The dr doing the test has done with this other J pouches, though not a child j pouch. If there is a problem they retrieve the capsule in a double balloon enteroscopy. I guess the need to know about crohns is important in treatment protocol going forward, though nothing has shown crohns previously.

quote:

the need to know about crohns is important in treatment protocol going forward

Yes and no. I have never been officially confirmed to have Crohn's although there are scattered ulcerated areas in my neoterminal ileum. My GI doctor thinks this is a result of pooling of feces above the pouch due to the strictured area above the pouch inlet, as opposed to a manifestation of classic Crohn's disease.

Nevertheless, we have proceeded to treat my inflammation in the pouch as though it were Crohn's.

A diagnostic test like this could be helpful in confirming Crohn's if they do find inflammation further up the pipeline so to speak, but if they don't it does not necessarily rule it out. I think the test just gives the Doctor a clearer picture of what they are dealing with.

I think the main value in getting more certainty on ruling out/in a Crohn's diagnosis is not so much in regard to medical treatment (even biologics, since Remicade, Humira, and Simponi are also approved for UC).

The real value would be in deciding surgical options if medical treatment fails. If there is a high suspicion of Crohn's, it would affect decicions relating to the advisability of surgery to salvage the pouch.

Jan

My GI was considering one for me earlier this year, though it got hung up in red tape because provincial health insurance plans don't cover it. That being said, I have reservations about it as well given that I have a history of adhesions. I had an MRI enterography. Pretty straightfowarded, though drinking 2L of volumen mixed with metamucil wasn't exactly my cup of tea.

With respect to diagnosis, sometimes IBD can be indeterminant. Crohns can sometimes be tricky to diagnose because it doesn't always present classically. As Jan said, it's always good to have a working diagnosis to guide treatment. However, many inflammatory conditions have the same treatments despite differing diagnoses, so even if Crohns isn't confirmed or ruled out, chances are the course of treatment may be similar.

"The real value would be in deciding surgical options if medical treatment fails. If there is a high suspicion of Crohn's, it would affect decicions relating to the advisability of surgery to salvage the pouch."

if there is no crohns's would that be more or less of a reason to salvage the pouch if meds don't work? Thank you.

Yes, if Crohn's was not suspected, it could assumed there is a better chance of pouch salvage surgery being successful. If Crohn's was suspected, then pouch salvage would be less likely to be successful, and he would not be a candidate for a continent ileostomy(Kock pouch or BCIR).

Jan

I'm to have one soon, too. I'm nervous because I have narrowings and things get stuck often. I had an MRE and it showed narrowings. The doctor offered a great solution for my case- it's a patency capsule. Basically same size as the regular one, but has no camera. What's special is it will dissolve if it's stuck. So I feel it's worth the risk. After swallowing it, I have to have an X-ray three hours later to see where it is. If I do ok then I'll move forward with the video capsule. See if this is an option.

I get them with a BCIR