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

why wouldn't get a jpouch

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

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Why wouldn't you get a J-Pouch?
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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 (affiliate link, not vegan) or zinc ointments (affiliate link) 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

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

  1. Hey there all who have bowel issues:

    I had to choose to either live with an Ostomy or have another surgery and get a J-pouch due to a rectum removal caused by Stage 4 Colon cancer.

    I’m writing to share my comments & experience thus far because prior to my own colostomy and ileostomy and finally J-Pouch, I hadn’t read very positive things about the J-Pouch. I have Very Positive Comments from my successful reversal… so far😊👍😊

    Today, 2 1/2 months after my reversal surgery, I am cancer free, Love my J-pouch basically from day one and am getting back into being active!

    …post surgery I’ve played tennis twice, swam in the ocean twice, walked 3 1/2 miles 4+ times, snorkeled in the FL Keys (1 1/2 hour away from home w/o having to stop for a bathroom except once to just pee… So basically that was a five hour trip w/o having a bathroom emergency which was my fear) and I just bought a bike to get regular exercise.

    This may not sound like a lot of exercise, but for two years I’ve had 7 surgical procedures, one to remove a small section of cancer in my liver, one lifesaving surgery due to a blockage and my 6+ hours rectum/colon/uterus/ovary removal surgery Jan 2020 to get rid of my cancer.

    My final surgery and hopefully my last was my Ostomy reversal June 3rd 2020.

    For 4 years I’ve been fairly sedentary
    first because for two years (2016-2018) I lost a ton of weight & couldn’t walk far w/o diarrhea accidents (down from 140 to 106 lbs at my lowest weight) due to some type of IBS or IBD (undiagnosed due to lack of insurance), followed by excellent & successful intensive chemo & radiation & surgical cancer treatments at the Cleveland Clinic FL… (October 2018-Present) and in a few weeks I turn 67 y/o!

    I used to be a runner and as much as I’d like to resume running, I haven’t wanted to press my luck with the pounding and have leakage accidents. My surgeon says I can do anything except power lifting (and that becuse I lost so much internal support organs)

    I mention the Cleveland Clinic because they are renowned for their Digestive treatments and cancer treatments specifically Colon Cancer. They have at least two of the top Colon Cancer Treatment surgeons in the world & I feel blessed. The J-Pouch is their specialty. People come from all over the world to have these fabulous Doctors repair or fix botched or not working J-Pouches. My terrific surgeon (Dr. Eric Weiss, My terrific Oncologist, Dr. Nagarajan (who I credit with saving my life because he oversees my overall care) and my great Radiologist, Dr. Greskovitch… these 3 doctors saved my life so I’m still here for my nearly 23 y/o daughter who’s in college.

    Make sure you get the best medical care you can … Cleveland Clinic FL & Shands both Teaching hospitals are the only two hospitals with better than avg survival rates for stage 4 colon cancer and I’m proof. Many Doctors won’t recommend the Cleveland Clinic because they have a team-approach and you end up having everything you need done in one place instead of running all around the region to see various specialists.

    Regarding my Ostomy (which I had from Sept 2019 to June 3rd, 2020) it was hit & miss / trial and error. From Sept. 1 to January 14, I had a colostomy & it worked quite well w/ some major blow out and leakages caused mostly by my inexperience and the wrond type/ size flange.

    From January 2020 to June 3rd 2020 with my ileostomy, I had gained about 10 pounds which was very good really to be more robust going through my final surgery but due to a no longer flat tummy, I had regular frustrating ostomy leakages…

    ileostomies are mostly all liquid (mine was) and until I want back to a Convex flange from Coloplast, I had almost daily leakages ugh … very inconvenient and embarassing. The convex pressing around my stoma stopped my leakages but I didn’t discover the solution until about 4 frustrating months later…almost by reversal surgery time… June 3rd… my Ostomy was great & of course life-saving but I didn’t hesitate with the reversal and am sooo glad I did it (it had to be rescheduled due to covid-19 but I slipped into a window when elective surgeries were resumed.

    Now post reversal I have “two belly buttons”…( not really… my Ostomy hole will probably flatten out as I continue to lose the weight I purposely gained to handle my surgeries). The only problem I had with my J-pouch so far was after the first week… I didn’t have a BM for 4 days and was feeling very bloated etc., Fortunately the nurse told me to switch to a complete liquid diet which got things going and at my 1 wk checkup, my doctor told me to forget the J-pouch diet w/o roughage they sent me home with and to go back to eating anything & everything I ate before & that’s what I did & I’ve been regular *(for me) ever since

    … regular meaning 3 or more normal BM’s in quick succession every other day specifically… my BM’s aren’t I spaced out for some reason though sometimes I will have 4-5 BMs but usually 2-3 BMs all in close succession within about 30 min -1 hr. total and maybe another 1-2 BMs about 12 hours later. Then I skip a day or two depending on how much and what I eat. I’ve only had a few liquid-like BM’s when Diarrhea was most normal for me for 3 1/2 years before… And for me, they’ve mostly occurred early morning 6-8:30 am & between 7-midnight at night… every other day and sometimes I skip two days.

    So far so good, no running to the ladies room yet. I can feel the urge (where I couldn’t “feel the urge to go” too well for about 1 month now I can… oh and I had very mild bladder incontinence for about 1 month and wore depends for about a month just to be safe. Now no depends and just the lightest panty liners for bladder drips.

    I love my J-Pouch and am so grateful for my specialists and all the terrific staff at the CCFL which I would recommend to anyone… they took such great care of me and I would recommend them to everyone with bowel / cancer issues.

    Feel free to email me @ [email redacted by moderator. Sorry, it becomes a spam magnet] for addl info.

    Have a healthy happy Grateful Day

    Maralee

    Reply
  2. Hello. I have UC and had my whole colon removed. Im scheduled for j pouch surgeries 2 and 3, but the end ileo osto honestly is not terrible. I have an “outie” and it’s high enough to clear my typical pants and 1 1/2” belt. (Right of Navel)
    I want to leave it after 6 mos of no pain and not having diahrea in random places!

    I hate having “elmo” stickig out of my stomach, but NO PAIN. With a extended wear bag and osto shield, I bike and swim whenever i want.

    Buy extended wear 1 pc bags, nu hope rubber cement, q tips for touch ups, Ease Strips, eakin rings or barrier paste, and bulk removed wipes.

    Reply
  3. I’ve had my temporary ileostomy for just about 7 years. Couldn’t have been happier with it, especially compared with UC. But about a month ago I started having trouble getting the bags to stay on, the are falling off just about every night. I guess because my stoma is falling in on it’s self. So now I am thinking of getting the j-pouch surgery. After reading this article, it’s got me questioning the j-pouch. Should I maybe try to get my stoma fixed instead? Has anyone else had this problem?

    Reply
    • The first thing before you consider additional surgery is to have a stoma nurse take a look at your ostomy and appliance. It’s better to correct a potentially minor problem, rather than risk major complications. If step one fails, you always have step two. Best of luck!

      Reply
      • @veganostomyHello Sir Eric…I watched that video on J-Pouches tonight for the first time.  It was excellent and full of information.  I have to say, that I was very impressed with the care and advice, that this surgeon gives to respecting and listening to the patient. Thank you for providing all the incredible information you make available to us all.   Zippy83…hold the bus here…before you consider J-Pouch after 7 years you have to be sure that your rectal muscles and those further up can take the stress of stool once again. Incontinence from a weakness there is horribly time consuming and  embarrassing and it can happen even in your sleep. Knowing a J-Pouch has all its own issues, this is not to be considered lightly.   The muscles may never be strong enough again to work the may you think they should.  There are tests that can be done to find out if they are viable or not, and ofcourse exercises, but they are not 100% fool proof. A stoma can change for many reasons right down to weight loss or weight gain.  Have you noticed anything else going on with your intestine that may have got you to your stoma in the first place…re-occurrence of disease, blood in stool, stool changes, or?  Food changes?  Schedule changes and such?  I think it is wonderful you have had 7 years with your stoma,  and adjusted and accepted it, please, as Eric says, try and discover why your stoma is recessing first and solve the skin issues too.  It would be wise to check with your GP and he should send you to a Gastroenterologist for a review of your digestive system if you report any change there.  Yes, it would be nice to go back to somewhat normal bowel movements, but based on your acceptance of your pouch I think your normal is  right in front of you.  All the best, and be well! Linda

        Reply

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