Posted 2/27/2013 2:27 PM (GMT -7)
Thank you, folks - this was a lovely thread to come back to!
I thought I would be able to post online sooner than this, but I could not get a signal on the hospital's guest wifi in the ward and was too hooked up to various contraptions to be able to walk to a public area with wifi <_<.
Anyway, the surgery itself went very smoothly and well. No complications. I spoke to a trainee physiotherapist who had been present throughout my whole operation (about 2 hours long). He was very enthusiastic about it: said he hadn't been bored once, that it was fascinating to watch my colon being taken out... D: (Memory fails me as to why he was there in the first place, but apparently the surgeon didn't object to his presence.)
The following week was largely spent in trying to get pain under control, texting on my smashing new smartphone, and dealing with unruly patients and walkabout nurses - I didn't have that much time to think about my stoma! <_<.
Pre-operation I had an epidural put in. I profoundly wanted to see being wheeled into the theatre, but I was out like a light well before then, sadly. The only thing I remember about coming round is that I felt incredibly sick. That lasted a couple of hours, then gradually faded. My dad visited me the same day I had my op and marvelled at how well I seemed. I don't remember much about it now, but was certainly talking. Mostly slept that day, but by the next day I was much more awake. I was even more awake when my epidural started leaking in the middle of the night... Dear god what a saga that was >_<.
The doctor on call that night came across as downright incompetent. Kept on being fobbed off; first he claimed to have increased the dose of my epidural, then later on said, oh no, I never increased the dose LOL. Besides, it was leaking - what was the point of increasing the dose?? The final straw was when a nurse brought a syringe and, when I asked what it was, said paracetamol. 'Paracetamol only? Nothing else?', I said in a faintly appalled tone, which begged to be proved wrong: begged to have its faith in human intelligence restored by not seriously being offered paracetamol for 10/10 post-op pain. Alas, it was paracetamol only; I lost my temper then. The nurse babbled something; cannot remember it exactly, but it was about wanting to start from the bottom up. Only on the NHS would they want to work their way up from the weakest painkillers in the face of sheer and urgent agony - only on the NHS.
Anyway, hours later, they eventually brought the pain under control with oxycontin and morphine. The next day I was put on a patient-controlled morphine drip, which turned out to work pretty well: I administered my own, tightly-controlled, doses of morphine. Why they just did not give a large dose of morphine from the off I'll never know.
Said a bit earlier I didn't have much time to think about my stoma and, certainly for the first few days, that was absolutely true. The nurses did everything for the first couple of days, then I was gradually taught to empty and change the bags. I just took it in my stride, really. Staying in hospital is already a strange and disorientating experience; having a stoma just felt like one more weird thing on top of many other weird things. The pain worried me; I would have flashbacks to Crohn's pain and, no matter how many times I was reassured that it was all post-operation pain only, could not entirely dispel the belief that it was, in part, Crohn's pain. I will be a happy bunny when the pain has gone and the unwelcome reminder of Crohn's along with it.
The stoma is a relatively more massive deal now that I'm home. Occasionally I seriously wonder *** have I done. It's this large, ungainly, unsightly, smelly object to be honest. And I'm nervous about damaging it. Or, worse, blocking it. But I don't absolutely hate it. I'm more... bemused by it, if anything :-/
The last paragraph probably makes it sound like I regret the operation, when I don't. Overall, it's a massive amount to take in and I don't think I have taken in half of it yet. My stomach has been cut open and muscles and nerves shredded; that sort of thing pisses your body off. But overall, I do think I already feel better within myself compared to pre-op.
I'm starting to tire now and some of you are probably starting to wilt as well >_>. I forgot to say that I didn't actually have my entire colon removed: only about 90% of it. The surgeon (who was very good: she saw me several times) said that, as my sigmoid colon didn't look too bad, she decided to leave half of it. I was a little bit 'hmm' about that inwardly, as tbh the less of my colon there is for the Crohn's to come back in, the better. But for a possible future reconnection, I'm sure that's a bit better.
Meds-wise, I'm on 20mg Pred, 40mg (20mg twice a day) of Oxycontin, and 5-10mg of Oxynorm to take as needed, plus the usual paracetamol and omezaprole. Back on the Fortisips, to the tune of 3x a day. Thought I could never drink those again, but I managed in hospital: wanted to get enough calories and nutrients to aid healing. Gonna try to wring more Oxynorm out of the GP tomorrow, as was only given a small bottle of the stuff and I don't think the Oxycontin on its own is going to cut it.
And finally, I made a new friend on the ward >_>. She was in for osteoarthritis and an operation on her knee, completely different medical condition to mine, but we shared many, many of the same complaints about ward 22 >_>. (The ward we were in.) Have kept in touch by phone.
Part 2 coming up later before I, or the reader, collapses: whichever comes first.