I have a jpouch and had my surgery 7 years ago. No matter which surgery you choose you will lose your rectum but not necessarily your anus. The kpouch, bcir, and permanent ostomy all involve removing the colon, rectum, and anal sphincters and involving sewing up the back end (barbie butt). The jpouch is the only surgery for UC that allows the anal muscles to remain therefore giving one the same method of bowel contienence that a person with a colon has. The jpouch essentially replaces the rectum. Most UC patients opt for a jpouch, it's the standard of treatment these days. Kpouches, BCIRs, and permanent ostomies are often done if a jpouch fails. By no means does that mean that you have to choose a jpouch. Each surgery choice has pros and cons and prospective patients should weight their lifestyle with the surgery types. It took me about 2 months of research and talking with people who had each type of surgery before I made up my mind. I recommend you visit www.j-pouch.org for more information. That site has over 6000 members and is for k-pouchers, ostomates, and jpouchers.
BTW-I am thrilled with my jpouch and have never regretted my decision. It was the best choice for me.
Hi Jeff- I have surgery scheduled for the beginning of May, for UC. I am opting for a total proctocolectomy (removal of colon & rectum), with a perm ileostomy. I am a candidate for jpouch, but after doing a lot of research & soul searching, I chose not to. These are the reasons why: I do not want to go thru 2 or more surgeries. With a jpouch, I understand that it takes a good year for things to settle down to "normal" bowel action- prior to that, you are experiencing anywhere between 4-8 bm's a day, mostly diarrhea. To me, that's not much of an improvement over my current status! Also, when the rectum is left in, that too can become inflamed, with pouchitis- after undergoing suregry I have no intention of getting any type of "itis" diagnosis again.! I did a lot of reading on the jpouch forum, & the problems people are experiencing on that are way too similar to UC itself- "butt burn" from constant diarrhea, lack of bowel control, having to wear sanitary napkins or diapers, feeling afraid to leave the house due to the bathroom issues....these are all things I want out of my life forever. And on top of all that, the pouch may in fact fail, leaving one with a perm ileostomy after all. Another factor to help me decide was that I have a child already & am married- if I was much younger & in the dating scene, I probably would opt for a jpouch just for esthetics. I know there are many people with jpouches who are very happy with their decision. I just know for myself, the chances of something going wrong are too great for me to take. Do I really want an ileostomy? Heck NO! But truly, I am looking forward to my surgery so that I can start to feel better, & heal immediately, with no other surgeries/issues to (hopefully) come up. Like people said- do your research, ask tons of questions, talk to a surgeon about all your choices. It will take a while, but you will know what's right for you when you arrive at that decision. Good luck! Hope this helps!
Post Edited (Eva Lou) : 3/23/2008 5:08:42 PM (GMT-6)
Okay, let me put the record straight since I do have a jpouch. I do not have diarrhea, I do not have a lack of bowel control and I have never had butt burn! My bowel movements are formed unless I eat a lot of sugar which loosens things up but certainly does not cause diarrhea. Recovery was long but in that first year I went back to work within 3 weeks of surgery, went camping 6 weeks post surgery, traveled through Europe at 3 months and did a half marathon at 6mos. I was far from spending a year out of commission. It's best you get you surgery questions (kpouch, jpouch, bcir, or ostomy) from people who have had the surgery rather than those who haven't gone through the process.
Eva Lu's concerns are the same as I am going through. After 40+ years of UC, the stories that have been shared about incontinence and "butt burn" with the j-pouch sound like a continuation of the symtoms of UC. In the past, I opted to not have the surgery because of that. Now that I am in a pre-cancerous condition, I have no choice but to do something.
I do have a friend, like you Sue, who has had success with her j-pouch; however, her rectum is intact. That is why I am posing the question about the rectum and/or anus removal. My surgeon (I will also get a second opinion) indicates that I may very well lose the rectum and that not only may the sphincter muscles be compromised but that I may experience impotence. I am trying to get a sense of commonalities of those whose j-pouch's are successful.
All opinions and advice are gratefully received.
Post Edited (Eva Lou) : 3/24/2008 7:03:42 AM (GMT-6)
Post Edited (BEQ) : 3/26/2008 9:58:16 PM (GMT-6)
This is Becky, Jeff's better half (of course it depends on who you ask ;-).
First, I want to thank all of you for your feedback. I encouraged Jeff to participate in this type of forum as I received incredible insight myself from one last year when faced with an upcoming surgery. I believe, at first, Jeff was overwhelmed with all the information and what he perceived as "horror stories" of results of surgeries. But I get a sense, within the last 24 hours, that he has been put a bit more at ease with all of your reasoning about the skewed perspective when reading the forums. I believe he has accepted that the bottom line is that he will recognize an improved quality of life regardless of which option he chooses.
We have been together now for 32 years (28 married) and the first thing I said to him when he told me he decided to go forward with the surgery was "You don't know how happy that makes me because I want you with me for a long, long time." Then, of course, I felt horrible when we found out the surgery wasn't a slam-dunk (I think Jeff used some other profound terminology) as his GI indicated.
Please keep up the encouragement, it is helping us both!