Yes, I have ulcers at the suture lines as well. Doc told me that's the typical location. Do they think you can have Chrons at this point? 

Thank you for your response.

Dr Remzi has questioned Crohns but my GI has not. I'm not sure if I have ulcers below the inlet and need to confirm with GI as never had issues really other than in distal pouch and anastomosis outlet ( stricture) before this.  Never had fissures before Jpouch  either.

I'm just bothered by this since I have had numerous issues with pouch since creation five years ago. I get bad pouchitis off antibiotics and recurring fissures and now will be starting steroid enemas. 

Have you been diagnosed with Ctohns? Do you need medication for the ulcers?  My GI indicated this is a common spot for ulcers also. Very frustrating. 

Yes, my diagnosis changed to Chrons after 17 years, just based on appearance. I'm on Remicade. Have you discussed biologics with your GI doc? 

I am also on biologics for chronic pouchitis, which include these ulcers. I would encourage you to discuss this option thoroughly before entertaining more surgery. Why? Even if you decide to go forward with surgery, you may still need biologics to prevent more of the same. Better to know now whether they work any magic for you. If they don't, then pouch redo or removal may be a better option than pouch advancement.

By the way, my diagnosis did not change. In the long run, it does not matter. What does matter is effective treatment. Biologics are appropriate for both UC and Crohn's.

Jan

Thanks Jan and Brewbirds,

Do you mind if I ask what biologics you are taking and have they healed your ulcers and controlled the pouchitis? Have you ever tried to go off them to see what happens?  

The consensus, up until now, was that the stricture has been causing fecal stasis, hence chronic pouchitis in my case. Prior to this scope, I have shown consistent inflammation, but only a  very small ulcer along my anastomosis and in the distal pouch which is why this scope and pics really upset me.

I have been battling pouchitis on and off without antibiotics and I am sure that is why the ulcers have appeared.  I am now on cipro which is not as effective as it has been in the past and trying steriod enemas.  My guess is these will just be a band aid.  

I do think I should try surgery for the recurring stricture as I don't believe it is disease related, esp since my anastomosis and cuff appeared fine in this scope (usually they are inflamed as well) and my stricture was just about clamped shut prior to this scope and being dilated. It was giving me tremendous tailbone pain and lower anal pain .  If this  works, as both my GI and surgeon believe it will, I may be able to avoid the biologics and multiple other medicines. Tough decision. GI says rest of pouch looks fine other than suture lines where ulcers will form if they are to, so I am wondering if she would agree to biologics at this stage

I have been on Enbrel, Humira, Simponi, Cimzia, and now Remicade with azathioprine. Before the Remicade, the biologics were for enteropathic arthritis, not pouchitis. Up until about a year or so ago, pouchitis was just acute and intermittent. Over time, it became more chronic and I was on rotating antibiotics eventually in order to function. I had ulcers at the pouch anastomosis and the efferent limb and chronic cuffitis. The main part of the pouch was fine and there were no strictures. 

I have tried to reduce biologics, but this has always resulted in increased arthritic pain. I started Remicade in June I think, and have not been scoped yet. But, so far I am doing well off antibiotics (other than a harrowing bout of presumed norovirus last week). 

If you are anticipating a need for surgery regardless, then it makes more sense to do that before starting biologics. It is not that big of a deal (I've had surgery while taking them), but it is one less variable on the table. If you do think you may be starting biologics at some point, get all your vaccines first, especially shingles. You cannot have the shingles vaccine (or any other live vaccine) while you are on biologics. I had to be off for a month before the vaccine and another month before starting my Remicade.

Jan

Thank you Jan. So sorry about the norovirus and  I sure hope you are feeling better now. Those sure are a lot of different biologics you have been on but glad you found a combination of meds that is working  

This bout of pouchitis is worst ever. I'm having multiple nighttime accidents and waking  and in the bathroom almost every hour.  . Lomotil is not helping. I have extreme gas which I have never really had before with ppouchitis nor frank  IIncinrinence like I am experiencing.    I will be starting the enemas tomorrow but I'm fearful I will not be able to retain them. . I'm not sure why my GI did not seem overly concerned with my report considering the symptoms I am having.  

One other thing ...is it possible to develop ulcers on the joouch suture line due to straining?   I may ask about starting entocourt.  I am pretty much chained to the bathroom and fearful I am going to lose the pouch the longer this is unsuccessfully treated