colectomy quandry

I only have problems with acid when I eat hot peppers. I can eat just about anything else without a problem. I ate some huevos rancheros the other day that seriously made me grab for the A&D, but I hadn't dealt with it in a week+ from not eating hot peppers. Hot peppers are a big part of my life so it's been tough avoiding them, but i wouldn't eat that stuff with UC either, so that's something to keep in perspective. I can avoid hot peppers, or i can eat them and deal with the consequences. I try to limit it to once a week at this point. I use butt cream once a week. Some people don't even care about eating hot spices... with my ileo, I ate it without problem.

If I had 3 surgeries and ended up unhappy, I would be devastated. That's the problem with surgery too, when can you safely say it's successful? Susan53, who posted here a few months back, had a pouch for 20 years or something and ended up with pouchitis and needed to have a temp loop. It's definitely extremely risky. With the perm end ileo, you're good to go. I get that. I wear glasses and I slop them on like it's nothing, at the same time, i wouldn't mind not having to. I also didn't like when the bag was puffed up under a shirt. I felt like I would be dressing for the bag sometimes. That bugged me. Not the end of the world, really petty stuff...

not that anyone is aksing for my opinion, but oh well, here it are

this > " I'll keep letting people know what the poor outcome can be, so they have the knowledge for an informed decision." belongs on this forum -


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 -

NSSG: I still have the pouch attached and a loop Ileo, so I still have to pass mucous from the rear most days. It's still much better than UC or the pouch when it was active.
juststud: I still stand by the second comment you quoted, it's based on things I've read, not a conclusion based solely on my own poor experience of J-Pouch life.

notsosicklygirl said...
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.

juststud said...
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).

telha said...
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).

Hey, can we put this in more of prospective for the OP? This thread has seemed to go off-track, FAP is different from an IBD, it is rare for FAP J-poucher to get pouchitis or other pouch issues. So most of what was brought up in this thread is not relevant for the OP's situation.

OP, I understand your worries about time-off from work, you might have an easier recovery with an IRA because you won't have to have your rectum removed sewn up like you'd probably want to do with an Ileo.

You might even be able to get a 1-step j-pouch but that is a big surgery and some extra recovery time.

NiceCupOfTea said...
Am I allowed to comment on recovery from IRA surgery if I assume my Crohn's didn't turn up the day after I had surgery and that it took a few weeks for it to appear?

Personally I would have been hard put to work full-time after a month. I developed an ileus which took a fortnight to recover from. It wasn't the pushover surgery I thought it would be, but I don't know how much having an ileus contributed to that.

It's the human body which can be unpredictable. It's a YMMV thing, some people get ileus and others don't; some people get abscesses or infections and others don't. After my colectomy I had ileus for 24 hours, puked a couple of times and things woke up. I was back to work within 14 days of my colectomy, which is a desk job. When I had my j-pouch (step-2) built I was out of work for 8 weeks because I had some complications but some people are back to work in 2-3 weeks. Again, YMMV.

Well I didn't have a huge amount of choice but I maybe could have pushed for a j pouch with indeterminate colitis, but I went for the permanent ileo partly because I just wanted one surgery -- but I've had four surgeries in the past five years -- the original, fixing the non healing butt wound, exploratory to try to figure out why I was having so many obstructions, and then emergency to fix a hernia and move my stoma.

I'm doing great now in many ways and I still stand by my choices but I think it's important to acknowledge that there are also risks with the end ileo -- and my first one did work great -- getting a handle on the new one but its on the wrong side and shorter and not as good.

A stoma is basically already a permanent hernia and the risk is non trivial. I think we need to make the best choices we can and just keep doing that if things don't go as hoped.