Marianne, it's great that you share your positive j-pouch experience, the forum doesn't get enough of that. I want people to choose the jpouch if they *really* feel like that's what is right for them. I'm making a critique of how the medical practice educates and makes decisions for patients regarding what happens after colectomy.
Lots of people are in need of surgery and it's not all doom and gloom.
I agree with this. 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.
For you, I would not jump to conclusions until you have your next scope. Maybe you have acute pouchitis that a single round of abx would resolve.
Gmark: Yes, it's hard for me to see how this solution is really a good enough replacement for the colon.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis