I sent a message along these lines to my surgeon and J pouch clinician who work side by side at the hospital but I haven't gotten an answer yet and it's 6 hours of driving to go see them to discuss it in person (and I'd have to call in sick, again). Maybe one of you might have some advice?

I was diagnosed with severe cuffitis (even though my cuff is very short) about a month ago. I had my first infusion of Stelara of two weeks ago and apparently it takes 3-6 to take full effect but effects can be realized as early as 1 month following the dose. The doc said I had a 40-50% chance of the Stelara working and that this medication is the best chance I have.

I understand the cuffitis is a major problem, but the main symptom I have is an ulcer on the surface of my anal opening (which I can actually feel and see if I take a pic with my phone) and I am not even sure the ulcer is from the cuffitis, from a previous fissure, or from mechanically straining at some point. If I go to work and am on my feet all day, the ulcer opens upon a bowel movements and hurts terribly like passing broken glass; however, if it is a weekend and I sleep 11 hours, stay off my feet, and take oxycodone to reduce my BMs to 2-3x the whole day, then the ulcer closes and I don't experience ANY pain during the bowel movement. The doctor tries to tell me that the pain I experience is from the cuffitis, but if that is the case, then how is it intermittent pain which only occurs in the location where I feel the ulcer and only when it is open?  

I have a few questions:

1. If medication doesn't work and the cuffitis remains present, do I HAVE to get a temp ileostomy? Does cuffitis affect the integrity of the J Pouch? I think I would rather live with the cuffitis and no ileostomy but I do not want to continue dealing with an open ulcer.

2. Does anyone know whether this ulcer might be mechanical vs. autoimmune (due to the cuffitis)? I am trying to figure out whether the ulcer may simply go away once the Stelara has kicked in but if it is not autoimmune then the ostomy will probably be needed.

3. Should ulcers from cuffitis only be internal? If external the ulcer is mechanical, then I think I most likely need a temporary ostomy to allow the area to fully heal or else it'll continue to re-open unless I potentially take a month off of work and sit at home and rest until it heals for good.

4. For those with re-occuring fissures or ulcers, do you think a temporary ostomy is needed to break the cycle of fissures and ulcers? Or do you think that eventually the fissures will go away if I rest and am careful? I went a whole year without having any of these problems with fissures or cuffitis prior to the fissures beginning in October. 

Any help or advice from those in similar situations or having knowledge about this would be greatly appreciated.

Thank you.