Yes NYP also has this. I'm sorry about your pouch. I hope the remi helps. It put me into a remission for 3 years but ultimately the pouchitis won.. In my case I only had mild to moderate chronic pouchitis that caused severe symptoms very quickly. My surgeon said some people like me who are mild moderate have bad symptoms and some servere have none. 

Funny but several other people in my CCFA support group told me Remicade gave them abut a 3 year remission.  One of them is now being put on Cimzia.  I have never taken any biologics since I have had the pouch, but looking at these results, it seems like I am ready.

 

Ally Kat I have also heard that moderate, or even mild pouchitis can cause severe symptoms while severe pouchitis can cause very mild symptoms.  My concern is that the inflammation was never characterized as "severe" until this year and the pics looked pretty bad to me.  I study my pics every year and I could tell that things are not going in the right direction.

I think the finding of no dysplasia should be comforting. That being said it looks like you need to put the beat down on some inflammation.  Get that pouch into remission...and certainly that cuff!  Has the cuff always come back with chronic inflammation?

I'm sorry CT. It sounds just like you said, there is a lot of inflammation and that remicaide can't come too soon. I hope you can get this back under control soon. Keep up the paleo, I'm sure it's helping some.

The rectal cuff did not show much inflammation until the last couple of years.  But fortunately it's only characterized as "mild colitis." As we all know this is the most likely area for cancer to develop, if there is chronic inflammation.

 

The finding of mild inflammation in the cuff, the one remaining piece of colonic tissue, and much worse inflammation in the ileal tissue, is one of the things which likely has my Doctor suspecting Crohn's and wanting to treat it as though it were Crohn's.  However, My GI reinforced once again that there are more subsets of IBD than UC, Crohn's and Pouchitis so labelling it something is only being done for diagnostic and treatment purposes so I can get insurance coverage.  A lot of people do not understand this point.  The labelling of what it is is not's what important, the treatment is.

 

As my doctor said, "there are more subsets of IBD than we know what to call them........ dozens or more.....so what we call it doesn't matter.  It's inflammation and it has to be treated."  It's funny but that is almost verbatim what he said and I have been trying to make this point on this board for years in response to any number of "I have Crohn's and the sky is falling" threads posted on this board which operate off scientific assumptions that are almost as wrong as the one time assumption that the Earth is flat.

 

Solomon, I agree on the Remicade treatment but it has to wait until I am done with the radioactive iodine treatment for my thyroid cancer in September.  My GI wrote a letter to my endocrinologist about the scope findings and the Remicade treatment, and my endocrinologist responded, basically saying that the Remicade can be started immediately after my radioactive iodine treatment is done and he also told me to hold off on doing the blood tests my GI ordered in conjunction with the Remicade treatment until I am ready to start it.

ct you have had some reports before that worried you a lot as i recall that sounded pretty scary ..my doctor has often told me the reports could sound  or be worse than they are..with that said i would like you be alarmed too..we always feel like we are walking time bombs i know..

 

but its good to have another alternative if necessary and it sounds like you do...i think with all of us that have ongoing serious issues we just have to bounce around trying something till it stops working which seems to be everyones pattern(certainly mine)and then often back to something we had before..sigh!! you have come through some tough reports before and still standing..

 

thinking of you and wishing you well..

Rebecca,

 

Thanks very much for your post.  I did not post my scope pics, but I have a mental image of how they looked in past years as opposed to this year.  I think the inflammation is much more pervasive and it was characterized as "active" Crohn's colitis in the GI's report, although the pathologist's conclusion was "inconclusive" on whether I am dealing with Crohn's or pouchitis, with is about the 5th different pathologist who has so concluded. As I have already posted, I don't care what it is, I just want to get the best treatment for it.  I am not so worried about my symptoms (which remain stable as long as I take antibiotics), as I am about the chronic inflammation.  I am now past 20 years dealing with inflammation in the pouch.  It has to be reversed or I will be in trouble down the road.

 

I will likely start Remicade some time in October after my radioactive iodine therapy for thyroid cancer concludes.  That is the plan at this point.