lol, that is a sad image.
You also have to take into consideration the fact that people who have an end ileo with UC, are people who are having 3 step surgery. Often we still have procititis between step 1 and 2, so we are in and out of the toilet with the end ileo passing blood and mucus, and it's urgent... You can't get an accurate picture of life with the ileo when you're still worried about your butt. I was pretty lucky with my butt, I didn't suffer from terrible proctitis symptoms, but I did go to the bathroom and pass "stuff". It sucks to have an ostomy bag and still sit on the toilet and push. That's what we have going on after the first step.
That poor, suffering caveman <_<.
Yeah I know about
the proctitis part. I'm not really sure how inflamed my rectum was going into surgery (I got slightly conflicting reports about
that, so I'm not sure if it was mildly or moderately inflamed - all I'm sure of it wasn't as badly affected as the rest of the colon). But I had zero
butt symptoms for months after my first surgery. I eventually passed my first, incredibly foul-smelling, mucus 'BM'. I had diversion colitis in my rectum and the symptoms did very, very slowly increase. However, it never became anything like as bad as some experiences I've read about
- it was mildly annoying (passed mucus every day, occasionally passed blood, occasionally had tenesmus), but no more.
As for your earlier point about
a puffed-up bag and "dressing for the bag", that's something that probably would have improved with more time. It takes as long for the bowels to adjust to having an ileostomy as it does a j-pouch. For me I think it took at least a year for the gassiness to settle down, perhaps even longer (my memory for time-frames is dreadful, sorry). All I know is there came a point when I not only didn't need to get 1x a night to empty the bag, I didn't even wake up to a puffed-out bag anymore. Didn't have issues with it ballooning in the daytime either.
But yeah, for the first year at least, I was paranoid about
the bag filling up when I was out in public. I would empty it every hour or at least as often as I could. I eventually calmed down and became more confident about
leaving the bag for longer between emptyings. (This was only when I was out - never worried about
it at home.) I never needed to change how I dressed even slightly. Wore the same jeans and t-shirts/jumpers that I always wore. Admittedly my tops are always loose, but my jeans are more close-fitting. I suppose if I had a penchant for baring my midriff I would have needed a belt or something to restrain the bag, 'cos the top of it did have a tendency to pop out over the waistband.
and this > "I firmly believe there are pouchers out there that are suffering needlessly, stubbornly refusing to accept a return to Ileo, for whatever reasons (pride, stigmatisation etc)." not so much -
He's not saying that every, or even most, j-pouchers are like this, just some. To be honest, is this really surprising to anyone? Seriously? Look how stubborn some people are about not
having surgery but continuing to suffer year after year (and yes I think there are some UCers who fall into that category as well).
hi thanks for your advice I have a pre op assessment before the op so I will certainly ask some questions ! I live in the uk and we rarely get a chance to see another surgeon I think that if there will be few probs keeping the rectum then I may leave it as the choice was either to keep it or have a bag The worry I still have with keeping it is that I work full time and weird shifts, don't want to spend most of the day on the toilet as I have targets to meet. I am also on a zero hours contract so have to be careful about time off as don't get any sick pay.
I'm from the UK as well (as is SL). If you do change your mind about
having an ileostomy, make sure that a) you see a stoma nurse beforehand and get measured up for the position of the stoma, and b) your surgeon knows the importance of creating a stoma with a decent spout - 'flush' (i.e. level with the skin) stomas are a nightmare to manage.
If on the other hand you go for an ileorectal anastomosis, good luck. You should take at least a month off after surgery to recover, preferably longer (but it depends on the individual and the job).