Sinuses are usually caused by leaks, even if there is no frank leak now. Constant inflammation at the suture line can lead to a leak, or it could have started early in the original post op period. I guess you are lucky it has not abscessed, but maybe you'd have this answer sooner if it had abscessed. 

It does explain why antibiotics tend to settle your symptoms. If these sinuses arise at or near the suture line, you cannot conclude it is Crohn's, since that can be a complication even without any IBD.

The bad news is that it seems that for everyone here, pouch redo is the usual remedy. However, nearly everyone has had good results with a redo.

Staying on antibiotics should buy you time to sort this all out. Good luck. I bet you are very weary of this merry-go-round!

Jan

Thanks Jan. It all makes sense...the severe ilieus after takedown, the nighttime fluid leaking right after that was attributed to 'diversionary pouchitis' and the surgeon putting me on antibiotics immediately after, the stricture  at the anastomosis present since takedown, all the peri anal symptoms snd excruciatibg fissures and pain I have and why Cipro is the only thing that helps me half way function and on and on.   Never have I had any of these issues in the 25 years I had UC  

I'm not sure I understand how you have sinuses with no leaks?  Are they just little tunnels in the pouch where stool gets trapped and infected or could they form due  to the stricture and not being able to fully empty the pouch and from straining? Would they have been there since my takedown or do they develop over time?   I'm certain this is the treason I also have ongoing tailbone pain I complained about to my original surgeon several times  what are the risks of not acting on this immediately? 

What concerns me about the pouch redo is there is ulceration where the pouch is stiched together and Dr Remzi  felt pouch looked burnt out and there is a question of Crohn's   I was managing off antibiotics for a long time before the scope but I was definitely not symptom free.  I am  guessing I am no longer able to do a pouch advancement with cutting of the stricture with these issues going on and it upsets me my local surgeon was going to attempt this procedure without these additional tests ( gastro enema)  

I  am so angry it took all this time of my complaining of these recurring painful symptoms and wasting 5 years of my life suffering and having to go to Ckeveland twice to finally get the right tests done for someone to finally figure out what has been wrong with my pouch pretty much since day 1   

i have have had such bad luck and post traumatic stress from all this that I'm  very frightened to attempt a re do or give up another year of my life going through it  

Thank you for the information  

No leaks mean that there are no leaks at this time. Fistulas and sinuses are simply leaks that become little tunnels that are lined with epithelial tissue. It is the body's way of preventing widespread infection. Essentially, they become part of the GI tract, and this is why the body does not sense them as something to heal. If fecal material becomes trapped in them, it gets infected and causes a lot of symptoms. 

Sometimes they can open the sinus up to become part of the pouch. But, with the stricture, multiple sinuses, and pouch condition, it is not an option in your case. I think that Dr. Remzi means that your pouch is "stiff" when he says it is "burned out." Once this happens, it is fibrosed and unable to work as a reservoir. 

I agree that it must be very frustrating to not get a proper diagnosis until now. It may not seem so by what you read here, but these complications are uncommon and most surgeons have not encountered them. My early leak did abscess, so it was apparent right away. So, while it made me severely ill, I had intervention only a month post op, without sinuses forming. Just lucky I guess.

Jan

Thanks Jan. So far of all the medical doctors I have seen in five years, combined with all my independent research on my issues,  you have described this best. The members on this site are so lucky to have you as an active member offering continual advice and support  

 It's very sad. I honestly don't think I have Crohn's and considering how healthy I am otherwise, I should have been a perfect candidate for this surgery.

 I should have suspected something was very wrong on my scope soon after takedown when I had the stricture and the surgeon's report comments were noted as being 'very surprised' I had so much inflammation in cuff at that time.  At that time I was prescribed  anucort. The inflammation could have been disease related or my issues could have been surgery related.  I will never know  

 I can tell you the surgeon I see in my state has always suspected I had an initial leak and noted he never does  a two step Jpouch going in on very high doses  of steroids as I was on.  Then again, he never suggested the gastro enema X-ray and was suggesting removing  the stricture  scar tissue and dropping and re-stapling  the pouch which Dr Remzi  is not in favor of at all without doing some of these more invasive tests.  My GI was also pushing me to the in state surgein and told me I didn't need to go to Cleveland.   

Dr Remzi said he feels I have an 85% chance of success with redo and I was surprised he suggested it even if possible question of crohns   ( the scary part) 

i am hoping to gain a couple of months before going through this enormous surgery  I just hope I'm not putting myself at more risk by waiting if I opt to try pouch redo after six month ostomy 

I think you reduce your risk by having the ostomy for a few months. It can help restore your health (both physical and mental) before taking on a major repair. While I've never been to the Cleveland Clinic, I've read countless stories of how Drs. Shen and Remzi (and Fazio) have been able to solve unsolvable pouch problems. There have been a few who have been unhappy with their care, but that happens everywhere.

One thing for sure, you could use a break from butt issues!

Jan