This is probably in the realm of typical. It could be cuffitis, but it is just too soon to tell. Things are just going to be funky down there while healing occurs. It is also typical to assume the worst. Some people just have to stop coming here for a while because they keep imagining that they see themselves in every post.

Hard to find that happy medium of being alert, but not paranoid. So, basically, take note of wther this gradually improves or gets worse. 

Jan

It turns out that my suspicions were right from the beginning. Although one of the fellows kept assuring me that there was no problem, I went for a pouchoscopy today. The cuff was inflamed, meaning cuffitis.

Could it be diversionary? How will be possible to tell? What does this mean for takedown?

First of all, this should have no bearing on your takedown. It is possible that this is diversionary inflammation and restoring the fecal stream could improve it. But, it is just as possible that it is regular IBD related cuffitis. Did the doc prescribe some topical treatment for you?

Jan

Thanks for the responses, Jan.

I was prescribed Proctofoam HC enemas to make the inflammation die down.

My colorectal fellow seems pretty unconcerned about it, but I'm concerned about:

A) Feeling really poorly after takedown due to cuffitis

B) He is maybe not taking this seriously enough. I have seen a study showing that only 40% of cuffitis patients are well-responsive to topical therapies. I am interested in neither bidaily enemas for life or the possibility of harsher drugs. He insists that it will resolve and not be a big deal, but I have learned to be suspicious of doctors' assurances.

I expected that getting a pouch would not be without its challenges, but developing cuffitis before takedown seems like an abysmal start to my pouching life.

Any advice?

Or, you can look at it this way. Wringing your hands with worry will not change the outcome. It will only increase your stress hormones and make things worse. So, you may as well assume that this is diversionary and will improve with take-down. You have just as much chance of that being true as a worst case scenario, perhaps more. 

We all hope for a perfect surgical outcome with no complications. We don't always get what we want. If you hope for the best, while preparing for the worst you will be OK. I won't sugar coat it. Sometimes stuff happens. I have had many complications and I am OK. Not what I would choose, but I am OK.

Jan

Thank you for the response.
I've not been able to find much info on diversionary symptoms. Other than seeing improvement from takedown, is there any other way to distinguish diversion from IBD caused pouchitis/cuffitis?

Not really, other than seeing improvement when the fecal streamis restored. If it is bad sometimes short chain fatty acid enemas can help. If it is regular cuffitis, you can use Canasa or hydrocortisone suppositories.

Jan