I feel so rubbish still

Lolzers, seems like my threads have a life of their own :p

Handsomfreddy - You made the right choice. Staying on high-dose steroids for much longer would have been playing russian roulette with your health, and you would still have ended up needing to have surgery. Happy UC is over for you now.

If I'm right, you take 20mg of Oxycodone a day overall, 10 in the morning, 10 at night? That is a low dose; I wouldn't quite say low enough not to worry about, but low enough that you're gonna become an addict in the next week or two. I was on literally 10x that dose for a month after my operation. I feel stupid about that in retrospect, but I'd never even heard of Oxycodone and had no idea what a 'normal' dose was. I was terrified of pain after a horrific night where my epidural came out less than 48 hours after having an open colectomy; nightmare night, took hours for the incompetent doctors/nurses to provide effective pain relief.

Getting off that was brutal to be honest. I was all right until I got down <100mg a day but after that I started feeling the pain. (Not the surgical pain; that was still around but easily tolerable after 2 months). The withdrawal pain. Oh, the pain of withdrawal from a strong opiate.

That said I do not think you will get anything like those withdrawal symptoms. I would start worrying if you were still having pain bad enough that you couldn't sleep through after 2 months, but I think for now what you are going through sounds fairly normal. In my experience, it took about 4 months for the surgical pain to disappear entirely. I was a bit surprised by just how long it lingered. But I never came close to needing pain pills to dealing with the pain once I was fully off the Oxy.

Re Prednisone withdrawal - Yep. Recently I've been starting to wish I'd taper off over a period of several months now, instead of the two and a half months I managed. I think I did come off it too fast, but I knew the Crohn's wouldn't return and I just wanted off the Pred once and for all.

I'd consider going back on a low dose and tapering off again, but only with a doc who really knows about this kind of stuff and I don't have a doctor who falls into that category.

Well, I'm no whippersnapper, but I'm not exactly elderly - yet >_>.

I really regret being on that high a dose of Oxy; it wasn't necessary and I had a hellish time coming off it - the first 4/5 days were the worst, but I still felt dreadful for a week or so after that. More to the point, I developed a sensitised, itchy skin issue, which is still around, and which I can't help wondering if the Oxy partly triggered or made worse. I half believe the skin is a psychosomatic issue now, but I still think something had to trigger it to begin with.

Doctors - especially in the US - have become absolutely paranoid about pain meds and drug seekers. Doesn't stop some parts of the US being absolutely awash wth painkillers anyway, but that's another issue. The point is it's difficult for people in genuine pain to get the pain relief they need, especially young adults. Even for me, I've not always been able to obtain adequate pain relief. The most spectacular example was when my epidural failed and they tried to palm me off with paracetamol a few times. Absolute joke, I was literally crying with pain. This was in the middle of the night, nobody else in the ward could have got a wink of sleep! Basically, the staff were robotically using the 'step up' approach to pain relief in the face of sheer agony. If you want the stronger stuff, sometimes you just gotta take the weak stuff first before you'll be given it.

By all means continue to take the oxy at night. Sleep aids recovery. Severe sleep deprivation does no favours for general health and state of mind.

I'm not eligible for a "take down", as I had Crohn's in the terminal ileum and no surgeon in the country will give me a j-pouch :-/ The only option I have for reversing the stoma is to connect the end of the small bowel to the rectum, which I still have. I spoke to my surgeon yesterday, coincidentally enough. Still no definite answer about a reversal: she wants to wait before doing another major surgery on me, and - this was more implied than anything else - to accept the stoma. I'm a dreadful hider of my feelings, so it really doesn't take a first class psychologist to discern how I feel about something.

Thing is, I'm quite sure the surgeon is actually willing to do the surgery eventually, but I don't think it will happen anyway. I need a healthy rectum and I'm 99% sure there's some inflammation there still. The irony slays me.

Anyway, I can't comment about takedown surgery from personal experience, so if you really want to know, it's best to make a new topic to ask other people about it: loads here have had it done or are waiting to have it done. Best of luck; hope the remaining surgeries do go smoothly.

Bruce -- The vast majority of the rectum is removed in j-pouch surgery. That's why rectal inflammation is not an impediment to the surgery. The pouch is constructed out of the terminal ileum, so if you have disease in the small bowel, the likelihood of pouch failure is VERY high. So high that surgeons won't perform the procedure. Rectal inflammation is a contraindication for the kind of reversal that NCOT is talking about, which would merely attach the end of the small bowel to the entire rectum.