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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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.
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
- De Zeeuw S, Ali UA, Donders RART, Hueting WE, Keus F, van Laarhoven CJHM. Update of complications and functional outcome of the ileo-pouch anal anastomosis: overview of evidence and meta-analysis of 96 observational studies. International Journal of Colorectal Disease. 2012;27(7):843-853. doi:10.1007/s00384-011-1402-6.
Crohn’s disease and indeterminate colitis and the ileal pouch-anal anastomosis: outcomes and patterns of failure. Brown CJ, Maclean AR, Cohen Z, Macrae HM, O’Connor BI, McLeod RS. Dis Colon Rectum. 2005 Aug;48(8):1542-9. PMID: 15937625
I have a JPouch & am not too sure if I am happy with it. When I had the stoma between surgeries it was great & easy to handle. The jpouch is always busy & I find myself going to toilet up to 15 times a day some days. Sometimes I go & immediately after want to go again. I am meeting with a surgeon this week as I want to consider going back to a stoma. Has anyone been through this process & are you pleased with the result.
Hi Peter, I hope that your surgeon has a few options for you. Your experience is not uncommon, but there are several variables that might be at play here.
How long have you had your jpouch? What brought you to needing surgery? What is your diet like? These answers may lead to clues about why you’re using the bathroom as often as you have.
Have had the jpouch since 2013 as I had UC for 10 yrs previous & bowel was removed. During ops I felt the stoma was great but the jpouch has never really been what I was told I would get. For example I was told to expect toileting up to 6 times daily. Never had that!! Basically tried different diets but generally just eat basic food. No grains, seeded fruits, pork, spicey foods etc. Just meat & veg really. When I took Ciprofloxacin I was great.
Most days I probably toilet up to 12 times & have had nights with that many as well. My jpouch doesnt seem to be able to store very much & I have to position most days near a toilet.Sometimes I experience a lot of pain before toileting & such a relief when I go, actually that happens most days. Very Frustrating
Peter, my friend has/had a j-pouch–she experanced -sp- the same.. Got rid of it, and happier now with just the stoma pouching. This was suggested to me also-but I refused once I got educated VERY WELL of this procedure. This works well for a younger person– and that I am not-69 yrs. Once again as you know by now–This procedure is a whole learning of your training your mussels in that area. For some it is great-for others, it was like before they received their stoma and pouching system. so, they went back to being an ostomate. Either way-we r looking for the toilet… :-)Wishing you the best !! m.
I have a question for those who had an ileostomy bag and decided to have the J pouch procedure that failed. From my understanding, if the pouch fails and you go back to the bag…. you lose those 12 inches of small intestine that has to be cut off to remake the new stoma for the permanent bag. Are there any new side effects or do you continue to live the way you initially did when you had the bag? Has anyone noticed or had any nerve damage from the many surgeries?
Hi Joe,
I can’t answer through experience, since I’ve never had a j-pouch, but many times a failed j-pouch can be redone or recreated. Success rates drop with every surgery and each surgery presents new risks.
Any surgery in or around the rectum may lead to nerve damage in that area, but each surgeon is presented with new variables every time a new patient comes in.
Here’s a really, really great video on failed j-pouches, which was given during AIBD2017 (I was there but missed this presentation!). NOTE: Some graphic content and lots of doctor- speak. Still insightful:
I had my jpouch created in ’93 due to ulcerative colitis. A year ago I had it disconnected due to a large – 10 cm. – abscess that fistulized and became septic – this was just the last straw, on top of the pouchitis and cuffitis and strictures and a previous RV fistula, and a new Crohn’s diagnosis. So, for a year now, I’ve had the jpouch inside me, but totally disconnected with an end ileostomy. I am actually scheduled to have the pouch removed on Oct. 29th . But in response to the question, I haven’t noticed any problem with missing those small intestines that were part of the jpouch but which are now not in use. My ileo was “high output" for maybe the first few weeks, but settled down and in my opinion seems to be fairly “normal". Of course, I can’t really compare my output to others but for me if seems normalish. As for nerve damage, there was none in the jpouch creation, or in the recent disconnection and ileo creation, which was done laparoscopically. Hopefully I won’t have to update this after the 10/29 pouch removal – that one will be done open through the abdomen and through the anal area. For reference, I’m a female, 62, and in pretty good shape otherwise.
Thanks for sharing that, Perkling. Best of luck for your upcoming surgery!
My surgery at age 23 was supposed to be two-part with a J-pouch as the end result. I had been on so many steriods that the surgeon said trying to hook up my small intestine to my rectum in preparation for the J-pouch was like trying to sew cheese. He stripped the membranes from my rectum (saving me from the possibility of colon cancer later), but left the muscles intact, giving me the option to wait 6 months to convert to a J-pouch, but set-up for a permanent ileostomy if I chose that. I had been very sick with UC before surgery- couldn’t work and was told not to get pregnant. The surgery was the first surgery I had ever had, was 9 hours long, left me stapled from ribs to my pubic bone and in the hospital 3 weeks. When I finally recovered, I was SOOOO happy not to be running to the bathroom in pain all day, and certainly didn’t want another surgery, so I kept my ileostomy, and never looked back!
After what I have been through, I think I would still take the J-pouch,as it had been my first and only option at the time. Knowing what I know now, If an Ileostomy had been a choice, I would have taken that instead. A stoma travels well most of the time. Once you get the process figured out, it is easy enough to deal with. Though,the timing of the stoma is not always spot on, it has made my life more livable. I have a better confidence now then I ever had because of it. There is so much I do not miss from the J-pouch. Painful rectal spasms, burning and rashes, and knowing I may not make it to the nearest washroom without a huge embarrassing situation. Especially that deep inner fire when it becomes inflamed…nope, do not miss it and will take the Ostomy on a dime. Neither would I have the surgery to reverse one. If things are working out, and my health is good, and there are only little issues, I would not go thru another surgery. That is not to say that I would not encourage someone to try it. I think that would all depend on what there disease does on average. The old pros and cons thing comes in here strongly and you have to weigh all your options. People talk to people on this sight. Questions are asked and experiences are heard and taken into consideration. That is all important to anyone facing a possible surgery.
Hi AnaM, Its no wonder you are feeling like this after all you have been through. you have been given life changing surgery and it like being walked to the deep end and thrown in. No one can have peace with an ostomy with burning skin and leaks, but I can tell you these can be sorted with help from the stoma nurse and help on here. The normal life you enjoyed you can and will get back. The road back starts with the current issues. Please take Eric up on his offer and join the forums which you can use in conjunction with help at home. Ostomy or J-pouch is will be of use. Best Wishes.