Rectal bleeding after the ileostomy shouldn't prevent the next surgery from going forward. I had rectal bleeding and inflammation in my rectum after the first surgery, my surgeon said it was normal, occurred in about half of his UC patients, and we moved forward with the next surgery. I asked if I could use steroid enemas since they worked for me in the past, but he said it was better to do the surgery on inflamed tissue than on tissue that was weakened by steroid use. In fact, rather than postponing, he said that if it was really bothering me (I had urgency and even a small amount of incontinence at this stage), he would do the surgery sooner.

Honestly, if I were you and if there are any other options available, I would seek a second opinion from another surgeon. Many here had their j-pouches constructed when they were still flaring in the rectum (I know because when it happened to me I sought advice!). Either there is more to the story than the surgeon has explained to you, or he is being overly cautious.

I also had rectal inflammation prior to jpouch surgery and was on a high dose of oral steroids for a long period of time prior to my operation. Neither phased my surgeon too much. Three years later and I still have rectal inflammation at times in the remaining cuff and have had a small ulcer at my anastomosis connection pretty much the entire time. I'm not sure there is ever going to be a perfect situation going into the surgery. I guess it depends on how skilled the surgeon is and how confident he feels operating with inflamed tissue. What concerns me more about this is whether your son may fall into the refractory cuffitis group, where some of us are, once the biologics are stopped (assuming they relieve the inflammation). Most surgeons would prefer to operate on a steroid free patient but the reality is many of us are on them going into surgery and if a short course of oral steroids helps with the bleeding I'm not sure why your surgeon is that opposed to it.

Maybe it would be helpful to get a second opinion.

Most Docs are quick to shy away from steroids these days, because they really do have more bad long term side effects and a systemic impact than some of the other meds. They did that recently with my kid's first flare.

We went with Humira for my daughter's Crohn's colitis, because it also covers her sacroiliitis. Also, this study is how her docs are treating Crohn's patients:

http://www.sciencedaily.com/re.../02/140219160412.htm

It does take more than a few doses of any biologic to ascertain if it will work for you, though my daughter received relief two days after her load of Humira (3 shots at once).

I had my surgery when I was in my worst flare ever, with pancolitis. I was hospitalized on TPN and bowel rest and high dose IV hydrocortisone. Didn't work. Still went ahead with the first step of surgery (J pouch creation, colectomy, loop ileostomy) and did fine.

What is refractory cuffitis?
I'm getting very discouraged reading all the things that can and do go wrong with j-pouch surgery. We were really counting on this being the cure to UC, but it seems that for many, the trouble continues on.
I am getting a second opinion on treatment and timing of surgery, and will keep asking and searching for the best thing to do.
thank you for taking time to answer and help me.

Rachelraven, I appreciate your response. I'm so sorry your own daughter is now diagnosed, as you were.

I too think we need to give Remicade an honest try before abandoning it. I hope I can get the adult GIs to consult with me. Last two times I tried, they would NOT see a ped.

Refractory cuffitis is cuffitis that is usually not treatable by medicines or can be treatable but requires constant medications to keep it quiescent

The vast majority of the people on this site are here because they have problems with their j-pouch. Conversely, the overwhelming majority of people with j-pouches (>90%) don't have any problems at all. Don't let a site that is specifically for supporting j-pouch problems convince you that it's not a good option.

Cuffitis is not the norm, and rectal inflammation prior to surgery is not predictive of cuffitis. It just isn't. Every UC patient has rectal inflammation, it's a defining feature of the disease. If we knew something that DID reliably predict refractory cuffitis, surgeons and GIs would be using it to screen patients.