I am sorry you are going through this. Quite a few people here are taking Remicade on here, that is a biologic. I hear a lot of great things about it. Maybe you should suggest that to your doctor and see if he agrees. A lot of people on here have educated me about Remicade on here. One person on here told me that Remicade has a credit card or patient support thing or something similar to that, it is called Remistart I believe, I believe it helps with affording Remicade. I am not sure if it works for all people or not but it is great to research if you have time.

Good Luck Dear

Sudie,

The Camera Pill is not a treatment, it's a diagnostic tool. It is being mentioned because Crohn's may be suspected (did you have a recent pouchscopy?) Other diagnostic tests are the Prometheus Blood Test, the CT Enterography and the MRI Enterography, all designed to distinguish pouchitis from Crohn's. I had all of these tests except the camera pill.

I think you are correct that it's an expensive and useless exercise. I would ask your doctor how will the results of the tests change your treatment indication, if at all? I doubt you will get a good answer because the treatments are mostly the same.

I saw the camera pill when it first came out in 2005 or so. One of my father's connections at Merrill Lynch told him a company was making it and gave my father a sample pill. It looked like a huge horse pill I would not be able to swallow.

Back in 2007-2012 when it was suggested to me, there were problems with the pill getting hung up in the ileum and surgery sometimes being necessary to extricate it. It was due to that risk and my doctor's inability to confirm how treatment would be any different that I rejected it.

However it's no longer 2007 - it's 2021- and I heard advances have been made and the pill is a lot smaller and as a result there are less complications. I think if I recall there might be an Israeli company that makes them. I would ask all these questions.

But the bottom line may be an expensive test with no conclusive consequences for treatment determinations. Either there is something to be gained by it or not and I do not see what is to be gained by it unless they can tell you something that will be gained by it.

As far as antibiotics, I did use doxycycline with some success. I rotated antibiotics continuously for 20 plus years with success, but they only kept my inflammation "simmering" in the pouch, never eliminating it. I eventually went on Remicade after being encouraged to do it from 2009-2015. In 2015 I gave in and went on Remicade after 20 plus years rotating antibiotics. I have had very good results, still on Remicade and now off antibiotics and all other treatments. My Pouch is in good shape. I have some inflammation at the J pouch inlet and in the neoterminal ileum. This is likely due to backsplash stool, but I carry a Crohn's diagnosis.

You can stay on antibiotics for years - maybe as long as I did- but you do need to be scoped annually and eventually, you may well need to go on biologics. You might also try probiotics. They seem to work for poster Scott F. In big doses. Good luck.

I took doxycycline for several months when I had small intestinal bacterial overgrowth (SIBO). It worked well, and seemed to be an effective replacement for the Cipro I was usually on. It did give me some abdominal pain, so I haven’t gone back to it.

As CT says, I’ve had good success with high-dose probiotics (VSL #3 in my case). They are very expensive, though, unless your insurance will cover them.