I'm not sure I've followed the arguments in this thread correctly, but anyway. :p
I am very grateful for the NHS, I would take waiting times over bankruptcy any day. And I have found the NHS does work fast in emergencies.
I absolutely love my ileostomy. I have zero concerns about
how it looks. Even when I first got it, I would show it to anyone who wanted to see it. It was the only way to permanently get rid of the awful defecation problems I had. Comparing that to how suebear feels as described in the post above - isn't that evidence that there is a lot more than just physiological facts relevant in decisions about
surgery? Neither of us is wrong, j pouch is right for her, ileostomy is right for me, and the only way for both of us to achieve a successful result was that surgeons listened to our individual concerns. (And I have had some complications with my ileostomy, including the need for further surgery, it's certainly not without physical problems, but I still don't regret it at all.)
Personally, there was little hope remaining for my colon when it came out and this is true for other people too. However, you make the same mistake that my doctors did. When you say people are in need of surgery, you seem to be implying jpouch surgery. Nobody *needs* jpouch surgery. We needed colectomy and something new to poop into.
And I do not think the jpouch should be the procedure of choice because of the medical reasons in my original post
- Losing 50 cm terminal ileum
- more adhesions due to more operating required to construct, move, connect pouch, create temp ileo.
- creating anastomoses, which can then form surgical strictures
- creating a replacement for the colon that seems to be susceptible to the same autoimmune issues
Further, I do not agree that success is merely measured by whether a patient keeps their pouch or not. There is a group of patients who just accept a lower quality of life. Also, while I know CCF's statistics, asking at a major German hospital, they say they see 17% pouch failure. I went into surgery keeping the "95% success" statistic but I'm skeptical of that now.
J-pouch is a good option, but I think that patients (including me) are hurt by the "default" status that the j-pouch enjoys. End ileostomy is mainly presented as a plan B, when I think the ileo is better if a person is able to overcome the issues associated with life as an ostomate.
SL: It frightens me, but if I feel like the risk is overstated. Generally, looking at any operation where the rectum is totally removed and sewn shut, impotence seems to happen much, much more often to older men (who may have marginal ED before the op). I think that the risk for our age group is quite low. It's just that if it is even a 0.01% chance, the possibility is just so frightening. It was definitely on my mind going into my initial surgery. If I decide to abandon jpouch, I don't think I would let this stop me.
Isn't ED another subjective concern that some men are going to care about
a lot more than others? I don't see why you'd say the procedure of choice should be determined by physical facts and then go on to say subjective concerns influence your decisions. Though I may be misunderstanding what you mean.
Do the studies make clear they are using a narrow definition of "success"? If the researchers recognise they are only looking at one factor, it's only misleading if others (doctors? people online?) take the data and use it to convince patients without explaining how success is being defined. Though I guess they should use a more accurate name to indicate they mean only that people keep the j pouch.