Message for FUTURE J-Pouchers

PDXDavidMember

If you are reading these forums because you DON'T have a J-Pouch yet, but one is likely in your future, this post is for you.

This site is a great place for information about all aspects of the J-Pouch universe, but keep in mind that it is populated by a large segment of people who have problems with their J-Pouch.

Statistically, I think only about 5% of J-Pouchers have major chronic issues with their pouch. The vast majority have few problems and what problems they do have are temporary and treatable.

So as you read these forums, keep in mind that it may appear that pouchitis, cuffitis, c-diff, and a host of other problems are the norm.

This is not the case at all. There are just more of us here because if we didn't have issues, there wouldn't be much to discuss. You simply don't see many posts that say, "I'm not having any problems..."

So please don't be alarmed and develop harsh preconceptions of the procedure based on the number of people here who have chronic or debilitating problems. We are the exception, not the rule.

.

10/12/133:09 PM

❤️ 0

Original Post

Replies sorted oldest to newest

mgmt10Member

Good post and very true. Good luck to all the future J pouchers out there.

10/12/134:53 PM

❤️ 0

Jan DollarModerator, RN, retired

So true, David. I cannot count how many times I have advised people not to let their fears of "what-if" paralyze them from making reasonable choices.

It is sometimes easier to stay with the devil you know than to take that leap into the unknown. But, the truth is that satisfaction rates are very high with j-pouch surgery, 90-97% depending on what study you read.

Jan

10/12/135:15 PM

❤️ 0

CTBarristerMember

Back in 1992 when I decided to have J Pouch surgery this Board did not exist and the Internet had not yet been invented or discovered. I suspect that being the kind of overly analytical person that I am, this board would have made the decision much more difficult than it proved to be. Ultimately, my decision was based on listening to what my doctors were telling me. In other words, the "old school" listen to and rely on the expert doctors, rather than on the Internet horror stories. That old school approach to my decision making served me well.

10/12/135:42 PM

❤️ 0

LesandiegoMember

Ah...the luxury of choice. I really did not have much choice (due to perforated colon), so I am playing catch-up on the "learning" aspect and this board has really been an asset in helping to educate me.

10/12/1310:40 PM

❤️ 0

ktaMember

When I knew I needed surgery, I think I read every post in the archives. Instead of scaring me, it prepared me for what to expect. This board made the choice a lot easier because I felt armed with information. It helped me interview surgeons and, as best as it could, prepared me for that challenging first year.

10/12/1311:19 PM

❤️ 0

Scott FMember

It's certainly true that satisfaction rates with J-pouches are much higher than you'd think if you just read these forums. OTOH some things that happen with J-pouches aren't uncommon, and folks ought to be prepared for them. For example, antibiotic-dependent pouchitis is common and quite manageable. If someone convinces themselve that daily antibiotic use is unacceptable, or a "failure," then they sure might be disappoinited.

10/13/1310:18 AM

❤️ 0