Chances of Crohn's returning?

After a colectomy w/end ileostomy for colonic and terminal ileum disease?

I don't feel like the disease is gone. If surgeons won't do a j-pouch because it's going to end up riddled with Crohn's, then why doesn't Crohn's attack the stoma similarly?

Will I wake up one day and there will be fistulas or whatever? Since there's so little literature on Crohn's and colectomies, I don't know what to expect in the future. I just think it will be bad, whatever it is.

In both UC and Crohn's inflammation is more likely to occur in an area where there's a higher bacterial load, which is what happens when you have stool sitting in a pouch instead of continuously passing through. It's also theorized that that's why UC tends to start in the rectum and progress upwards. In any case, that's why surgeons are usually hesitant to build pouches, either j-pouches or k-pouches/BCIR, out of tissue that has already has disease activity.

Crohn's CAN attack the stoma unfortunately, but it's far less likely than if the same piece of tissue were fashioned into a reservoir.

I suppose I just don't want to be taken unpleasantly by surprise again. I had pancolitis from at least 2007 and probably earlier. I feel a mixture of guilty and dumb because the pancolitis should have been a clue or predictor for an eventual colectomy and yet I had absolutely no idea. No doctor ever brought up surgery to me and I never asked about it. I didn't find out until 2012, when I told my GI I was fed up with this, I wanted surgery! He looked as serious as I've ever seen him, but not surprised; he told me exactly what surgery would entail. And he was spot on. From that moment, any hopes about being able to get away with a resection were dashed.

So now I just feel like I want to know the most likely outcomes, rather than naively assume I'll never get fistulas or small bowel disease, just like I naively assumed for 11-12 years I would never need surgery. I had terminal ileum involvement before surgery, so I think the Crohn's return is a matter of "when" and not "if". I should probably get on azathioprine or 6MP as a prophylactic.

Thanks folks.

Yeah, I'm just depressed.

No energy, barely feel better than I did with Crohn's, and stuck with a stoma that can probably never be reversed and that I don't like any better. I have no more control over my BMs than a baby and I hate it. I really, really hate it, and I don't know how to feel any differently. I just feel disgusted when I see the output come and spurt all over my leg. And I don't know how to not feel disgusted. Pre-stoma, I would not have wanted to watch the diarrhoea come out of my rectum, so why am I expected to feel okay about watching the poo come out of the hole in my stoma and not mind it? There is obviously something I am not getting about all of this.

I mean this sincerely: if I could go back in time, knowing what I know today, I would not have a colectomy. I would force the surgeon to do a resection and take my chances or just not had surgery at all. The Crohn's might have ended up killing me, but what life do I have now? I might just as well have let it have done.

Note: I'm only talking about me. Obvs no one else minds, except me. Obvs I wasn't a good candidate for a permanent ileostomy.

Edit: Never mind, I did put the bleakest possible spin on it, but that's me... :-/

Post Edited (NiceCupOfTea) : 10/1/2013 10:12:30 AM (GMT-6)

I do use opaque bags; I meant whenever the bag is off... >.>

I change my bag once every 2 days on average, usually after a shower. The shower is actually the least worst place for the stoma to go off; I still don't like it but at least the water rinses the crap off. It's when I get out of the shower that the problems start. I have to look at the stoma to prep the skin, with the hole looking right back at me. Half the time I'm lucky, there's no stoma activity. The other half of the time, it's a crapshoot, quite literally. That's what I can't stand.

The stoma going off interferes with the prepping of the skin. Using tissues interferes with the prepping of the skin. In just a split second, the ghastly thing is quite capable of dribbling all down my leg and has done so many, many times.

I'm sick and tired of it and I haven't had the stoma for a year yet. I go as long without eating before changing the bag as I feasibly can. I get my showers in the late morning before eating or drinking anything and I usually haven't had anything since dinner the night before. That's 15-16 hours without eating already, but I can't skip both breakfast and lunch, so I don't know what else to do.

Not to mention other nuisances, fears, and occasional disasters (last week the contents of the bag spilled right out onto the bed), etc.

It's just old already. I'm no Probiotic. I'd do anything to reverse this: colon transplant, whatever. Genuinely would rather be running to the toilet all the time with Crohn's, but still have my colon and no stoma or bag.

Edit: Shouldn't have said that last sentence. The Crohn's will probably return anyway, like the prodigal son... :-/

Post Edited (NiceCupOfTea) : 10/1/2013 12:50:28 PM (GMT-6)

I know I don't have to remove the bag for a shower, but I just feel a bit better for letting the skin 'breathe' for 15 minutes or so (whether it makes any difference to the skin or not, I don't know).

I will try the plastic bag tip for collecting output, although I'm a bit worried it will go more under the waistband than into the bag :-/

All I can do it is try it I guess...

I used to do my bag changes in the evenings, but that worked even less well than late mornings. Marshmallows and peanut butter don't really go very well with trying to lose weight =/ How many marshmallows did you eat and how long did they take to stop stoma output?

I have followed the same routine for a long time now, 'tis true. AKA doing the same thing over and over :-/
In the beginning, I wanted to try different things, but I've just given up. It feels like the stoma nurses (there're two of them) just cut me adrift, and that was it - haven't seen them since. Anyway, apart from no longer seeing the two people capable of making me feel a bit better about having a stoma, I now do all my own ordering. There's like a bajillion products related to ostomies and I have no idea what does what, or what's good or rubbish, so I stick with what I already know.

Anyway... Thanks for trying to help and not just avoiding me as a lost cause. Appreciated.

What I find most helpful (although I don't always do it) is to eat a low residue meal for dinner the night before and then change late morning. But your body probably works differently. I rarely have output late morning unless I ate food the night before that takes a lot of time to come out.

I stopped with the marshmallows and such a few months after surgery... same deal, didn't want to gain weight, and I don't even like them.

Did you ever have quiet periods when you were flaring before surgery? I find that my rhythms are similar to then.... late morning was always my best time of day then. Do you pay attention when you have the bag on to when you have more output and when less?

Can you find some more things to do that bring you joy and/or that make you feel good about yourself? Instead of trying to make yourself less upset about the Crohn's, surgery, etc, it might be a better tactic to try to make yourself more happy about some other parts of your life... just a thought, take or leave..... the things can be really small and simple, just important to prioritize them.... this strategy has helped me.

@blueglass - Mornings and afternoons were my quiet time with Crohn's for years, perhaps because I was a night owl; my bowels mainly plagued me in the evenings and nights (there did come a time where it made no difference what the time of day was). And, indeed, my stoma is definitely most active in the evenings, judging by the sounds and rate at which the bag fills up. Unfortunately it is fairly active in the afternoons, too. Late mornings/early afternoons seems to be about as quiet as it ever gets; I don't know about immediately after lunch - in theory it should take a little while for the food to get through... :-/

You are right; might be a more fruitful tactic to concentrate on things which make me happy rather than miserable - if I can find them :-/ I can think of things I'd like to do, but the inability to concentrate deeply doesn't help. Think I'm a bit ADHD minus the hyperactivity element, tbh. Otherwise, would love to be able to spend an afternoon just reading or drawing without getting fidgety or bored.

@Pluot - 90 calories isn't so bad; might hesitate at 350, but not 90. And I've been meaning to put some music on my mp3 player and go for walks again; this time I might actually do it... >.>

Oh yeah, and re the stoma nurses. Yes, I could make an appointment if I wanted to, I'm sure one of them would see me. I've just been too stubborn and embarrassed to. The embarrassment derives from a promise I made to the nurse and surgeon about getting a dog. This was back in July. She probably doesn't even remember it now. But I never got a dog because I became depressed (became?) and had doubts about my ability to look after it, since I felt like I could barely look after myself. I just felt stupid at the thought of explaining why I never got a dog after all.

But since she never got back in touch, I ended up feeling rejected and ignored as usual. Can't win :-/ ... But I think I will make an appointment.

*sees time* Okay I'm straight off to bed now, so no more meandering posts from me for a while. Again, thank you, folks... Goodnight :p

NCOT, great that you found something that makes changing easier!

I'm a morning person, and it sounds like we had similar rhythms, although the night problems continued into the morning for me .... I think the quiet gap comes from the big chunk of time where we were sleeping and not eating.... oh, I do not miss how awful my bowels were in the middle of the night when I was sick..... and I also used to arrange my schedule so I didn't have to leave the house until 10 am, because it was just too risky to be out and about (and then I'd have to get back by 4 or so, because otherwise I got too tired....).