Getting "the talk" tomorrow....

If you have CD (and I know its hard to know for sure) then I would not bother with the reconstruction (j pouch). If you are feeling good and healthy with your ileo, don't rock the boat. Just my opinion. If they told you with good confidence that you have UC, then I would say go for the j pouch. What testing have you had done to determine UC or CD? There are many cases of people with an ileo and keeping their rectum in tact. It just depends on the case.

I had exactly the same operation that you did, only two months earlier than you. My rectum and part of my sigmoid colon were left in, partly because the surgeon did not want to remove them while I was on steroids (much longer and riskier surgery than simply removing a colon), and partly with a view to a reconnection in the future.

What is closed off to me for good is a j-pouch, or ileo-anal pouch, 'cos I had Crohn's by every measure going: biopsies, transmural (involving all bowel layers) inflammation, disease in the terminal ileum. The j-pouch is constructed from the ileum, so docs will not usually do a j-pouch for Crohn's patients. This is because if there is one place Crohn's likes to attack: it's the terminal ileum.

There are exceptions, but I do not think you will fall into one of the exceptions categories. You are too recently diagnosed.

You might be a candidate for an ileorectal anastomosis (IRA), however. That's where the ileum is simply joined to the rectum/sigmoid, no bells and whistles added - the rectum is already there, so a new 'rectum' does not have to be constructed. There are two main drawbacks to this op: a) it may not be possible if your rectum is diseased and b) it tends to have be reversed eventually in Crohn's patients due to the return of Crohn's disease. But there is a study which shows that Crohn's patients who had an IRA were generally happy with it: nobody wished for the alternative of an ileostomy instead.

In my case, I last saw the surgeon in July and she wouldn't consider doing an IRA on me just yet. Just said she wanted me to get over the last surgery first and to get used to the ileostomy (because if the IRA fails, literally the only reversal operation is an ileostomy).

Re: removal of rectal stump. There's a possible risk of rectal cancer leaving the rectum in situ for years, but that alone wouldn't make me give up my only chance of a reversal, especially as the operation to remove the rectum (proctectomy) isn't a walk in the park and has a small risk of incontinence or sexual dysfunction (not that I have a sex life to worry about, but still) afterwards.

So cliff notes:

- ask about j-pouch, but probs won't be an option for you
- ask about ileorectal anastomosis
- ask whether the risks of protectomy outweigh the risks of possible rectal cancer in the future

I hope this helps a bit.

You're welcome. Indeed us Crohnies/ostomates have to stick together :p

My rectum story is sort of the other way round to yours. I didn't pass a single, solitary thing until 4 months after surgery. Then - after increasing rectal discomfort/spasms - I passed my first lot of brown mucus, which smelt absolutely dire. Ever since then I have been passing mucus regularly, probably once every 2 days on average; the smell is still a bit unpleasant, but not nearly as bad as the first time I passed it.

I get tenesmus (feeling of wanting to go) sometimes as well. No blood. But the mucus is always liquid... :-/