flare in remaining rectum?

I had my colon removed December of last year but surgeon left my whole rectum. His advice (and my GI's) was to leave it as he didn't want to do any pelvic surgery on me - I had surgery when I was 19 to remove one of my ovaries, and he didn't want to potentially add to the infertility risk as I'm young and haven't started a family.
For the last few weeks I feel like I'm flaring in my rectum. I always passed mucous every so often, no real pattern to it. But the frequency has increased and I get urgency with it. Last weekend I started seeing blood. It also causes me a lot of pain to pass anything, and I have pain up my rectum & cramps in my pelvis on & off during the day. I've also started feeling bad in general too, I'm so tired and just don't feel well - like I'm sick again.

I spoke to my IBD nurse a couple of days ago. Unfortunately I've a holiday booked for next week so she couldn't get me in for a scope before I go, which she said is what they would usually do in instances like this. So she gave me a two week prescription for Asacolon suppositories to tie me over until I get home and I'll make contact again then.
It was difficult mentally to put the first one in - I thought I was rid of all this!! But I've used them yesterday & today...and they're hurting me a bit.
Does anyone have any experience with using them with only a rectum intact? I feel like everything is just sitting in there (which I guess it is), but it's making me feel like I need to go to the toilet way more but obviously I don't want to let it out because it won't work that way! And then I'm getting sore & full-feeling in that area... Maybe it's hurting more if it is inflamed in there, and if they start working they'll be easier to put in?

I know that not removing the rectum always ran the risk of this happening, but I thought (hoped!) that I might catch a break and not have any problems for a while at least. So needless to say, this has gotten me really down..
This turned into a long post...suppose I'm just venting my frustration at probably flaring again!!

It sounds like you've developed diversion proctitis in your rectum - it was bound to happen sooner or later. Even people who've never had an IBD get it. The colon doesn't like being starved of 'food', or in this case, poo. I'm not sure how effective they are, but I've heard of short chain fatty acid enemas as a treatment for diversion colitis. The idea behind them is to supply the nourishment that the colon would otherwise get from poop.

I had the same thing. I was even prescribed salofalk for it, but in the end I never took it. I probably would have done if I hadn't went on to have a reversal. It doesn't help you but if I go back to having an ileostomy - which is quite likely - I want to have every last bit removed: rectum, anus, etc. I can't be doing with pain and urgency in that area anymore.

Do you have any plans for future reconnection? If not, I'd consider getting your rectum surgically removed. I'm not sure about the infertility risk, but young women with UC who have j-pouches routinely have their rectums removed: it can't be that high, as I don't think most women would have it done otherwise.

Is freezing your eggs an option?

The inflammation won't get any better by itself, so if no treatments work, you'll just have to learn to live with it or have surgery. Plus it's a remote risk, but you can still get cancer in the remaining rectum. That's not something I'd personally worry about for a long time, but I certainly don't want to be getting my rectum removed when I'm 80 and have rectal cancer.

I had to bug my hospital for a flex sig, 'cos I'd convinced myself the Crohn's had come back. (It hadn't, but I did have diversion proctitis.) That was almost 2 years after my surgery. God knows when they'd have voluntarily arranged for a checkup of their own accord.

Yeah, I know the feeling (sick of being sick, that is). I'm deeply sick of it.

I had a rectum problem with my surgery and according to my surgeon I was a very rare case. I did my own research and found Dr Schiller in Hollywood California he does BCIR surgery and it was my saving grace. If you have any questions please feel free to contact me. Good luck