Why Wouldn’t You Get a J-Pouch? (w/ video)

why wouldn't get a jpouch
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When people find out that I have an ostomy, a common question they as is “Why not get a J-Pouch?”.

Video

What is a J-Pouch?

When someone loses their colon and rectum due to Ulcerative Colitis, FAP (familial adenomatous polyposis), or cancer, there needs to be a way for stool to exit the body.

In many cases, this ends up being an ostomy, but some people have the option of going with an internal pouch, the most common being a J-Pouch.

A J-Pouch is only one kind of internal pouch that falls under the same procedure: an ileal pouch-anal anastomosis (IPAA). Other internal pouches include a K-Pouch (Kock Pouch), S-Pouch, and W-Pouch.

The J-Pouch is the most common style pouch, especially for those with Ulcerative Colitis, because it has a lower failure rate

How is a J-Pouch made?

A J-Pouch is formed using the end of the small intestine (the ileum). A surgeon creates a j-shaped reservoir that acts like your rectum, in the same place where your rectum would have been.

J-Pouch illustration
Don’t let my crazy art skills overwhelm you!

Most people have a temporary ileostomy created while they wait for their J-Pouch to heal.  This is often over several months, although some people wait to have a takedown surgery for a year or more.

While the entire surgery can be done in one shot, most people will have it done in two or more stages to allow for more time to heal and to minimize the risk of complications.

Benefits of having a J-Pouch

For most people, the idea of not having an ostomy bag is the primary reason they opt for this surgery. I can’t blame people for feeling that way since an ostomy can dramatically change several aspects of someone’s life. And if you pay for ostomy supplies out-of-pocket, there’s a financial incentive to reverse it.

Others, even those with stomas that have worked well, prefer to go to the bathroom they way they always have, so a J-Pouch is an attractive offer!

People with Ulcerative Colitis are often told that the J-Pouch is their surgical goal, so it’s often planned well before they go in for surgery. Many may not even know they have a choice in the matter, and simply go with the flow. I encourage this if that’s what you and your surgeon have spoken about and planned in advance.

While the choice to have a J-Pouch is entirely up to the individual, there are a few risks that need to be considered alongside the expected benefits.

Risks and complications from J-Pouch surgery

There are risks to every surgery, and J-Pouch surgery is no exception.

Over the years, complications have dropped considerably, but some patients may still experience any of the following (SOURCE):

  • Pouch failure (approx. 5%). This may result in a revision or removal of the pouch – leading to a return to an ostomy.
  • Sepsis (approx. 7.5%)
  • Fistula (approx. 4.5%)
  • Pouchitis (approx. 27%)
  • Small bowel obstruction (approx. 11%)
  • Incontinence (approx. 6-17%)

There are other complications, but the list above illustrates that even J-Pouch surgery isn’t trouble-free.

In addition to medical complications, having a J-Pouch doesn’t mean that you’ll be going to the bathroom exactly as you were before.

Not having a colon usually means that bowel movements will be loose and more frequent than “normal people”. Often times this liquid output can cause burning to the anus and creams, like Calmoseptine (not vegan) or zinc ointments are often needed to calm things down.

Many new “J-Pouchers” also find that they have leakage or incontinence when their J-Pouch is new. This tends to go away over time, but some may still have the occasional leak from time to time.

Why not have J-Pouch surgery?

Some people, like me, simply aren’t a candidate for the surgery.

Crohn’s patients are often told that they cannot have the surgery as the risk of their disease affecting the J-Pouch is quite high (SOURCE). I would also guess that patients with indeterminate colitis (where no formal diagnosis of UC or Crohn’s Disease has been made), there may be some hesitation to get a J-Pouch out of fear that if it is Crohn’s that it would be problematic in the future.

Because my illness included severe perianal disease, the likelihood that an internal pouch would fail was too high for me to even consider it an option. Plus, I kind of like my ostomy :)

Many patients who’ve had success with their temporary ostomy don’t feel the need to change their lifestyle or risk potential complications.  These people may simply opt to keep their ostomy permanently, although, some choose to have their rectum removed down the road.

There are also many people who are undecided and will keep their stoma for quite a while before making the decision. There’s no harm in waiting!

What should I do?

The decision to go ahead with a J-Pouch is a very personal one. I can’t tell you either way which path to go down, but I do suggest that you speak with your surgeon to find out what your risk factors are for complications.

I would also suggest speaking with other people in your situation who’ve either gone through with the surgery or have decided to keep their ostomy. One place to ask is the Community Forum.

If you already have your temporary ostomy, then you may want to consider how well it’s been working for you, or whether you are OK living with it forever.

 

Question: Have you had a J-Pouch or are you considering one? Leave a comment below and share your experience.

Sources

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6 thoughts on “Why Wouldn’t You Get a J-Pouch? (w/ video)

  1. My pouch made in 2001, and put into active service mid 2002. My surgery was elective and my options were:
    a) proctocolectomy with ileostomy in a single surgery
    b) proctoclectomy with pouch formation and loop stoma with takedown to follow later.

    Both solutions are imperfect and can come with countless complications so rather than focus on that I chose to look at the positives. That made the decision easy. Having no experience of either it was obvious to me that, if I was healthy and everything else were equal, living without a stoma was much preferable to living with one. If, like many others, I had already had a colectomy and was living with a stoma I suspect the decision would have been much more difficult. Actually, I know that would have been the case because when I was called in to hospital for takedown I considered not going through with it and keeping the stoma. Obviously that didn’t happen and here I am 15 years on. It’s probably fair to say I am at right at the top end of the success scale, eating and drinking whatever takes my fancy (just as well as I’m a bit of a foodie) and my pouch never gets in the way of anything I want to do. If it were not for the work I do with other patients I probably wouldn’t give my pouch a second thought.

    Having said all of that, pouch surgery is not for everybody. The decision is highly personal and will be influenced by your own circumstances. It’s also important to understand that success (however you define that) is not gauranteed and you do need to be prepared for that irrespective of which route you decide to travel down. Good luck to anybody going through this process, it can be an arduous journey but the end results can make it well worth it.

  2. Hi Eric, great video, as always! I’ve been following you for a while now and your videos have been very useful to me!
    I’m Cecilia and this is my experience about j-pouch: I’ve had UC for 4 years and I wasn’t responding to any of the available medications, apart from steroids. So, last year I had total colectomy with a temporary ileostomy. I spoke to my surgeon about risks vs benefits. I was very worried because I’d heard a lot of bad stories, but he’s a great doctor and explained me everything. He also told me that if anything went wrong after reversal, I had the option to get back to permanent ileostomy, but it wasn’t possible to do the other way round (getting j-pouch after having permanent ileostomy).

    I’m Italian, so the cost of ostomy supplies here isn’t a problem at all, because we have them for free. I also had great stoma nurses, who gave me a really great assistance and my stoma was working perfectly, but I decided that the reversal was worth a try anyway, because I really trusted my team of surgeons in Milan.
    Well, It has been 2 months after reversal and everything is perfectly fine up to now! I never have to rush to the toilet anymore (I have max 4/5 movements in 24 hours, but they’re not “urgent”, I’m in control and I can decide when to go). I eat almost whatever I want, I don’t have to take any medications and my life got back to normal finally! So for me it was a good experience and I’m so happy I didn’t go for permanent ileostomy without even trying reversal.
    I know we’re all different and I also know that it’s hard to have another surgery when you already went through a lot, but I’d suggest to try a reversal to anyone who can have this option and if anything goes wrong they can always get back to permanent ileostomy.

    Thanks again for helping people like you do, you’re a great advocate. Keep up the good work! All the best :)

    • I’m so glad that you’re doing well! I think that many people with UC ultimately decide to try the j-pouch knowing that they can go back to an ostomy if they had to. I’m glad those options exist :)

    • I had my pouch made in 2001. My surgery was elective and my options were:
      a) proctocolectomy with ileostomy in a single surgery
      b) proctoclectomy with pouch formation and loop stoma with takedown to follow later.

      Both solutions are imperfect and can come with countless complications so rather than focus on that I chose to look at the positives. That made the decision easy. Having no experience of either it was obvious to me that, if I was healthy and everything else were equal, living without a stoma was much preferable to living with one. If, like many others, I had already had a colectomy and was living with a stoma I suspect the decision would have been much more difficult. Actually, I know that would have been the case because when I was called in to hospital for takedown I considered not going through with it and keeping the stoma. Obviously that didn’t happen and here I am 15 years on. It’s probably fair to say I am at right at the top end of the success scale, eating and drinking whatever takes my fancy (just as well as I’m a bit of a foodie) and my pouch never gets in the way of anything I want to do. If it were not for the work I do with other patients I probably wouldn’t give my pouch a second thought.

      Having said all of that, pouch surgery is not for everybody. The decision is highly personal and will be influenced by your own circumstances. It’s also important to understand that success (however you define that) is not gauranteed and you do need to be prepared for that irrespective of which route you decide to travel down. Good luck to anybody going through this process, it can be an arduous journey but the end results can make it well worth it.

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