First off, I am with somedude in really kind of enjoying your neverending rants now NCoT :) really,though I truly, *truly* wish things would get better for you in every respect. It's not my business to say why you have more trouble adapting psychologically- it could be all physical/technical bad luck on your part and so I am not going to judge that at all. To reLly to your individual points, for what it's worth:
1) I agree with you all the way that when I remove the bag and see all the gunk that pancakes around or sometimes all over the stoma (when my stool is thick and I have been sleeping all night with plenty of output from late meals or snacks) it is gross looking indeed. I wish there were little internal windshield wipers or soemthing to shovel it all down away from there lol. No biggie though to me other than making me chuckle.
2) I have no prob sleeping the night (except that I normally need to pee once) if I eat an early dinner and dont have late night snacks... If I gorge late at night before bedtime I would be up 2x or so like you mention, if I eat mid evening I will usually be up once. However, I like to drink amply in the evening and evenin bed a bit as i like to be well hydrated, and find that I have to pee once or twice on any night (more, much more, if I have a cold or someing where I deliberately hydrate like crazy) so I dont find there is ever any net interruption to my sleep.
3) I have some itching here and there from mild skin irritation but stoma powder does do wonders- I am still getting the hang if the routine with powder, skin prep etc but it is very quick and easy in principle and only needs t be done while there is actual irritation; if the irritation persists one can look into changing the product you use
4) I am lucky in that I am a sleep on my back guy, with occasional shifts to the side- was never a stomach sleeper and I truly sympathize. My uncle is a stomach sleeper and had a temporary colostomy that kept blowing out because he lied directly on it... Maybe you can build some custom setup using those big comfort cushions or something, or gradually retrain to be a side sleeper?
5) just keep taking baby steps to more activity, as you can tolerate, get help re possible pred withdrawal issues, etc etc. it *sounds* like you were never very physically active at least in the years just before the surgery, but if I am assuming wrong as I have done before, I apologize in advance really. In any case, just use the baby steps method, trying. Little more every week, interspersed with slacker rest days if you get tuckered. It should gradually pass.
6) i asked my surgeon about
whether, if one had crohns colitis, and ones colon is removed, that somehow signals the disease to jump to the small gut in search if a new target and he said not at all, namely that the chance of it showing up there remains the same as it was when the colon was there... So there is every reason to believe it will not show up. Furthermore, he said that such disease, if it does show up, tends to be milder and more treatable than the crohns colitis was- I can verify that on pubmed but it certainly sounds nice, lol. And no matter what, if it takes years and ears for something (that may never show up) to show up, it is guaranteed that there will be much more minimal side effect drugsand treatments available, as snails pace as it often seems.
7) My wife, believe it or not, thinks my stoma is cute and "cool" and with her help I have adopted the view that this whole setup is just like the six million dollar man high tech prosthetics now being used, or the stuff on Iron Man or whatever- I think you enjoy sci fi.? There is to me something very cool about
having a pouch that will never ever get inflammation of any sort, and can be swapped at will.
Anyway, NcoT, keep venting anytime, and I hope nothing I said today will send you off ballistic at me but if s, it's all good... hoping above all that things look up for you sooner not later. Hey, we both still have rectums, so if the is a total cure for IBD tomorrow we can just each do a straight hookup, lol.
Post Edited (Probiotic) : 6/18/2013 10:26:24 AM (GMT-6)