Considering surgery

That's the exact reason i don't show those pictures to anyone with bowel issues hahah, makes them panic a little. Mine's horrible

Glad you have a game plan lined up. I hope the Remicade can help you. It's not as successful in UC patients as it is in CD patients but it has helped many. I tried it before my surgery and it didn't help me....not even a little. My mom is on Remi to treat her rheumatoid arthritis and it's done wonders for her. She had no ill effects from it at all (knock wood) and she's been on it for 7 years now. Without it she would be crippled by now.

Funny, my GI doctor told me the exact same thing: That I was too young for surgery (I still don't know what that means really....too young to be well again??!!) and shouldn't do it. I moved on to another GI doc after him who set me up with a fantastic colorectal surgeon and the rest is history.

Good luck with the Remicade!

I've only got to page 2 before I feel compelled to post!

First off, I had Remicade for a year. I met an 84-year-old lady in the infusion centre who'd been on Remicade for 7 years for her colitis, so don't give me this BS about only being able to get 3 infusions of Remicade in the UK! Seek a different hospital or argue your case more convincingly.

Second, I'm not even going to comment on people's attitudes towards the bag. I am too angry. Most of you are so lucky and don't even know it.

What sort of country is it where self inflicted obese people are given gastric bands and all the other treatment that goes with being a greedy fat beast free on NHS - draining it's resources. As a result people genuinely ill through no fault of their own can't have the medicine they desperately need in order to have any sort of quality of life because there isn't enough money in the pot... this country is messed uppp!

So much wrong in this post. And so much nastiness.

NCoT - re. your comments about people's attitudes towards "the bag"- I agree 100%! A mere 6 months ago my mind was 110% made up, like somedude, that no way in the world would I ever consider "the bag" for the "rest of my life." Since that time a lot of things happened: I learned my UC is a bit too indeterminate for my liking, even though leaning to UC; that fully 1 in 10 or so repeatedly 100% UC diagnoses turn out to be crohns post jpouch anyway, in spite of the original 100% dx; that crohns significantly increases risks of pouch failure, chronic pouchitis; etc. etc. All this massively shifted my personal risk analysis. I am still scheduled for a 3 step jpouch but presently am inclined now to stop with the end ileo step 1 and keep it as my perm ileo. I might (emphasise word might) be eligible for the jpouch in 2 more steps after that but that depends on the full massive dissection of the colon- and when you think about it, a 3 step would probably be prudent for every jpoucher except that no one wants to do more surgeries.

Somedude, personal risk analysis should be the basis of your decisions, and a lot of that wont even be possible until they evaluate you further with an MRI or CT scan, but honestly,if fear of something "hanging" off you (that will normally not be visible) is your basis for such a big decision, no offense, but you sound immature like a kid. There are bigger fish to fry in life, trust me. I assume you a still single, so I can sympathize with the "bag" issue in dating (my wife is totally gung ho for me getting bag rather than jpouch because she just senses, given my luck to date, that I will win the failed jpouch lottery- and she even thinks it is kind of cool- what can I say, my wife is a bitof a nutty, but exceptional lady.)

But then I can add something else- around 10% of men who get jpouches get sexual disfunction diwn there. Not a risk with ileo. So as you see, the risks, pros and cons are subtle and all over the place, it's not that black and white. My GI consultant at the surgery center told me that while most of his jpouch patients were satisfied with their pouches, the ones who were very unsatisfied tended to be type A men in high pressure fields- that little things like a bit of urgency here and there and occasional light incontinence were not tolerable for them. While I am not type A , I kmow I can be a bit obsessive about compromising sometimes so that remark cncerned me- but what appeals to me about the bag is that I can control most of it through technology and technique- that seems to be the learning curve for ostomy life and once perfected it becomes routine and just a few minute affair twice a week. I am very active outdoors like blueheron, and I actually think it'd be easier for me to empty a bag or swap a closed end pouch quickly then squat my poop in certain locations.

Anyway not trying to push my inclination for shooting for bag over jpouch , just trying to add some perspective to the attitude of "no way will I ever accept a bag"- it's silly to think that way before you research your own personal risk analysis. I certainly wont say never to a jpouch if I find that I despise my ostomy, assuming I have the choice after they slice and dice the colon for biopsies, but I am feeling fairly gung ho to be done with the UC after just one surgery and living my life again with just the one piece of "jewelry" hanging under my pants.

so here's a question i've been thinking about (not that i'm even considering the knife at this point, one never knows )::::

can't you have your j AND a bag too ?

cuz i keep aksing myself, how long can you go with the bag off ? you know, just put a cork in the stoma for a bit, say while you might wanna do something where a bag might get in the way :-0 !

if you had the j, you could do that for a while, then hook the bag up to get back to the real world ....

any of that make sense ?

@Somedude - f-, I hate you the most of all. For annoying me the most of all, and then making me laugh! >_>

What gets me going is having a freaking bag for life. Every time I start to think I am cheering up and coming to terms with it, the black clouds comes back. Am having a real self-pity party for one tonight... :/

@probiotic - If you have 'indeterminate colitis', I would be extremely wary of going for the j-pouch personally. But maybe that's because my GI and surgeon between them thoroughly scared me off it: the surgeon said I could expect to lose 4-5 more years out of my life if I had a j-pouch. A year getting the operation; a year dealing with the fallout of Crohn's, fistulas, etc.; another year deciding whether or not to go back to an ileostomy; and finally going back to an ileostomy. Don't worry, that almost certainly won't happen to you! I had Crohn's in the terminal ileum, which makes the prognosis vastly worse for a j-pouch. Even some Crohn's patients have a j-pouch, provided they have a history of no small bowel disease ever.

Tbh, living with a bag isn't that bad, and I'm not just saying that. I think it's the 'foreverness' part of it which is getting me down at the moment: I'm finding it hard to imagine. If I could get used to the idea it's for the rest of my life, I think I would fare a lot better mentally. Put it this way: living with a bag is easier than living with Crohn's. But still... It is a change and one that you have to get used to :-/

Somedude and NCoT- I hear ya too, about 2013 and technology and all; the surgery itself has come an awful long way, and as has been posted here, eventually single port colon surgery will become the gold standard I bet (Mayo and Cleveland Clinic are already experimenting with it, but I'd just as well not be a guinea pig on the very very latest stuff if only because one wants a mix of the state of the art with experience of the surgeon in a particular technique).

On the other hand, pouchitis remains as idiopathic as all the IBD's- unknown cause. Clearly an IBD-like dis regulated immune response to the pouch tissue is happening just as it is in IBD- with root cause unknown or at best chicken and eggish. Fortunately most jpouchers respond well to short courses of antibiotics, but not all, and it's still creepy that the underlying mechanisms are still just stabs in the dark.

Wacky new stuff like CanadaMark's amino acid balancing? Fine tuning worm therapy? Synthetically mass produced fecal transplant pills or suppositories? Who knows. Right now I literally am excited as heck to be rid of this sick soggy now lead pipe shaped tube in me (no fake remission for me to raise doubts before surgery- nosirree bob I am getting a whopper of a flare now leading into surgery- fortunately it's a 3 step ) but once sans colon I am keen to see where the new stuff leads to keep possible future crohns of the small gut at bay.

Oh, NCoT- so sorry you are having these dark clouds. But I think it's pretty clear that your ostomy issues and your other depression problems are attached at the hip- I know you are trying to work on them both but really, I think once the depression is solved, the ostomy outlook will change radically and you can morph into a blueheron or summer storm. Maybe the amino acid balancing therapy thing is something to look into, as if it does pan out (a bit early to say with one single patient study and one ongoing testimonial here), it would potentially zap both depression and any future crohns re-emerging.

Post Edited (Probiotic) : 4/12/2013 3:20:31 PM (GMT-6)