what is a jpouch

Jpouch removal – an explanation 

I know that these surgical treatments can be super confusing, I have explained to lots of family and friends to help them understand what is happening and so thought I would explain on here too.

Firstly, what is a jpouch?

Well, you can have a good read of my explanation here, but in short, a jpouch (also called an Ileo-Anal Pouch or Ileo-Anal Anastomosis) is an internal pouch formed from the end of the small intestine that is attached inside to complete the gastro tube from mouth to butt.  It is a ‘replacement’ for the large intestine and cannot be seen from the outside.

what is a jpouch

 

what is a j pouch

 

So this is what I had, I have no large intestine (colon) and my small intestine was formed into a pouch that was reattached to my bum.  Jpouches are pretty rare, they are becoming more common though and are sometimes called a ‘reversal’ after having an ostomy.

So the surgery I had in January was to remove my jpouch, unfortunately for me, it wasn’t working.  I had a lot of bouts of pouchitis (inflammation in the pouch) and issues with incontinence.  Some people absolutely love their jpouch and find it gives them a whole new lease of life.  For me, it wasn’t right and so the decision was made to remove it completely.

I had two options with my surgery, I could of opted for a temporary ostomy, where they would divert my small intestine away from the jpouch and out of a temporary loop ileostomy that would come out of my stomach.  This would give my body a rest and allow the jpouch time off.  I then could have a further surgery to reconnect it all again in the hope that the rest would have helped my jpouch and I would have returned to having everything connected internally.

loop ileostomy jpouch

 

 

Or my other option was the one I chose, I chose to have my jpouch removed completely along with my rectum and anus. So now, my digestive system starts at my mouth, goes down to my stomach and then into my small intestine.  They formed a permanent end ileostomy on my stomach and that is the end of my system, I have no large intestine, no rectum and no anus.

This was major surgery and quite a risk but I was at the point where I didn’t want to save my pouch, I was scared that I could have the loop ostomy and rest my pouch and still end up having all the symptoms of pouchitis, I also couldn’t bare the thought of multiple surgeries.

This is a BIG choice to make and anyone facing it should speak to their doctors and get all information and support available to them.  The bigger and permanent surgery was the right choice for me, I can only share my own experience but many other people make different options.

I feel a responsibility to try and share all choices when it comes to surgery and treatment as I know so many people read my blog and I would hate for anyone to not explore their own options.  You should always speak at length with your own doctors, nurses and surgeons.  The internet is a great place for information but it is not always helpful, I love that my little blog can be a tool in your kit to learn more about your illness, but make sure that no one place is your sole info source.

The jpouch didn’t work for me, but I am glad that I gave it a go as I think I would have always been wondering ‘what if’ if I didn’t.  But it does work marvellously for so many!

I hope this has explained a little more about jpouch removal, as always, if you have any questions, hit me up! You can find me on Facebook and Twitter.

15 replies
  1. Jan Robertson
    Jan Robertson says:

    Dear Sam,
    Have you written anywhere about the experience of having your rectum and anus removed ?
    I have just been told this is necessary for me. I will be OK with it and understand the physical process I will go through but would like to hear some real life stories about the experience to give me a personal picture of what to expect.

    Reply
  2. G Jackson
    G Jackson says:

    I had my anus and rectum removed. It wasn’t a remarkable difference for me at all. I didn’t even notice anything different. But once you have an artificial rectum it cannot be fixed if there are problems with it later.

    Reply
  3. Edward Lee
    Edward Lee says:

    My j pouch has failed me after 12 years. For psst 12 months I have been fighting Cuffitis abd pouchitis, with no response to treatment. I spend too long in the bathroom. Spend my life looking for toilets. So I have made the decision to have my pouch removed and have permanent ileostomy instead. I am looking forward to getting dome freedom back. A big decision but I have an ileostomy before I am coped very well. I have read your article and gives me confidence I am making the right choice.

    Reply
  4. Matthew
    Matthew says:

    Just wondering the recovery time after the Pouch/Rectum/Anus removal. I had an ileostomy for a short time, but now after 13 long, painful years, I’m ready to move on. My concern is post-op pain. Was it as bad as the initial surgery?

    Reply
    • sam
      sam says:

      Hi Matthew, I suppose everyone is different! I was in hospital for about a week and it was a good 6 weeks of recovery till I was up and about as normal, then a few months of minor pain/discomfort.

      Reply
  5. Jill
    Jill says:

    I’m going to see Surgeon tomorrow, I’ve had j pouch for 20 years, the past two years have been difficult, accidents,depends,creams,raw bottom,belly pain. I’ve decided to ask for permanent colostmy bag. I’m ready for relief. Can anyone tell me about if they had pouch removed and how long hospital stay was and if there were any issues with getting bag. It was not a quick decision, I’ve had a few obstructions that concerns me too. Thanks Jill

    Reply
    • sam
      sam says:

      Hi Jill, my hospital stay was about a week.

      Its not an easy decision and one I thought about long and hard, I am definitely happier with my permanent bag as like you I had so many issues with my jpouch,

      Best of luck to you

      Sam

      Reply
  6. Matt
    Matt says:

    I’m a JPoucher for 13 years and not having a good time with it. I, too, decided a permanent ileostomy is the way to go and am scheduled for surgery on Jan. 13, 2017. I had a temporary ileostomy in 2003, so I know how to deal with that (and looking forward to being out of pain and running to the bathroom all the time…), but I am very anxious about the anus and rectum removal. My surgeon mentioned drainage and possible infection. He also mentioned the recovery would be a bit uncomfortable. I am still going to go through with this, but I was wondering what your experience was with this part of the surgery.

    Thanks.

    Reply
    • sam
      sam says:

      It was quite uncomfortable for me, I never needed drains in my wound but it was quite sore as it healed up. It was itchy and very tender, I had a lot of salt baths to help.

      Everyone is different so it is hard to say how you will be, from my point of view,I could cope with it, it wasn’t as bad as the pain of pouchitis and butt burn.

      What I can say is that after chronic pouchitis, my permanent ostomy is a relief and I am pleased I went ahead with it.

      Best of luck to you xxx

      Reply
      • Matt
        Matt says:

        Thank you so much for being so positive. I’m sure this decision will allow me to move forward with my life, advance my career and enjoy my children more. I’m trying not to think of this as a JPouch failure (as the surgeons put it), but as an ileostomy win!

        Reply
  7. Mrs. Cam
    Mrs. Cam says:

    Hey, I’ve had my j-pouch and anus removal a little over 3 weeks ago. It is definitely a tough one as far as recovery so far but also the best decision. Although I am in discomfort and very tired, I feel well! After 18 months of trying, it turns out my j-pouch was just poisoning me and I have more fistulas than I care to think about, so absolutely the right choice. Very excited for being back to me and well. Just wish it would come quicker lol.

    Loads of love and best wishes to you all, whatever you are facing xxx

    Reply
  8. angela
    angela says:

    Hi, I’m 5 weeks out from j-pouch, rectum, anus, and right ovary removal surgery. (Crohn’s disease so j-pouch never worked for me-chronic pouchitis) I have to say I’m confused and feel really stupid asking this, but going to anyway. I have an external hemorrhoid that is causing excruciating pain. How does this happen without rectum/anus? My surgeon said he left opening for draining purposes.. I’m so confused. I was finally feeling better from all the abdominal pain, but to be honest this hemorrhoid is torture. Thanks in advance for your insight.

    Reply

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