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.
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.
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.
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.
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.
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.
how are you doing now? How old are you?? I want to switch too. I’m 68 and scared.
My husband,also 68 will undergo j pouch excision on Jan. 4 at Mayo. Worried and scared for him.
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?
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.
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
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
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.
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
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!
“I’m trying not to think of this as a JPouch failure (as the surgeons put it), but as an ileostomy win!” – I love that!xxxx
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
Oh you poor thing, hope you feel better soon xxx
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.
Helen. I have had a colostomy for nearly 12 years. I was told my rectum needed to be looked at. As for the last 12 years it hasn’t worked. They didn’t find any problems. But said if they did they would give me an ilostomy. What I don’t understand why does my surgeon want to do that if my colostomy is working fine.
I’ve had my j pouch for 15 years. Everything was great with it. Had five children after the j pouch was placed. But last year, my bowels were twisting causing lots of pains, and partial blockages. I had to get more bowels removed after last blockage that caused me to lose blood flow to part of the bowel. Now i have a permanent ilostomy, with little over 5 feet left of my small bowel. Im not liking it. No energy, dehydrate a lot, cant gain any weight. 5’2 95lbs. Im nothing but skin and bones. But have huge appetite. Food just goes straight threw me.
I too want to thank your for this blog. I’m closing in on 3 years with the jpouch/crohn’s and I feel the same now as I did before, miserable. I made the decision to have it removed and also scared about it. I’m 64 years old and never had issues with anxiety or depression, but this pain and living in the restroom is no quality of life. Hopefully this is the right choice as I know we’re all on our own separate islands.
This post is quite old. I’m wondering how you all are doing now.
I’m supposed to remove my jpouch and rectum/anus.
I’m worried about the recovery and the pain.
Hi there, I am doing ok, there have been no further issues regarding the removal of the jpouch, rectum and anus and I have a permanent ileostomy bag. I have had recurrent hernias in my abdomen due to multiple surgeries but no issues specifically to the jpouch removal.
Hi Sam,,
I am 13 days post jpouch excision and creation of permanent stoma, I am worried as I have an open wound and seem to spend all day dabbling off the output draining… It’s not pleasant but is it normal? Any advice greatly appreciated.
Thanks
Sorry I have only just logged on after my op! I hope things have improved for you, you should speak to your dr about your wound x
Hi All
I’ve had my pouch defunctioned for over a year now, due to fistulas and suspected Chron’s.
Consultant believes pouch in situ is better than excision due to morbidity but the pouch is still making me sick (pouchitis) not to mention the hassle of mucus discharge.
Does anyone else have an experience of ‘pouch in situ’? To be honest I’m really lost on what to do for the best. Any advice appreciated.
Thanks
DId you ever have the surgery? If so, can you explain your experience? Looking for a few more experiences and results.
I am going to have removal soon.Thanks for info.would love more.
My husband, has had a j-pouch for over 20 years and was on remicade for about the same amount of time for Crohn’s disease; but then about 2 years ago the remicade stopped working so his doctor switched him to Stelara and Entyvio and neither worked. In November 2019 he had a very bad inflammation of the pouch and the decision was ileostomy. He has done well with the ileostomy, except with the hernia he developed, over this past year. Last month he had a pouchoscopy and the year of rest didn’t improve the condition of his “J” pouch so the decision has been made to remove it. The doctor explained what to expect after surgery; but we wanted to hear more from someone who has actually had the surgery. If you wouldn’t mind sharing your experience with the surgery (i.e. how long did your surgery take, what did you experience after the surgery, for example discomfort level, how long was your recovery, how do you feel now and anything else you might think will help us understand better.
Thank you .
Thank you for this valuable information. It is such a relief to find others who have gone through similar situations as myself. I’d like to hear more about the surgery for taking down the j-pouch. Is there anyone who can recommend an excellent colorectal surgeon in Colorado Springs? Unfortunately, I’m at a point where I need another surgery. I’ve had 7 surgeries and 23 hospitalizations. I would love to talk with someone who has had similar experiences. 15 years ago, I had my entire colon removed but had severe complications that nearly killed me. The j pouch wouldn’t function properly so I’ve had an illeostomy all these years. I never had the surgery to take down the pouch and close up my body. So now I’m experiencing chronic pouchitis that is causing repeated UTIs and creating severe blockages. I thought I was going to die last night, the blockage was so bad, lasting for 6 hours. My situation is unique, so I need to find a doctor who understands my problems. If you could help me find a good surgeon in the Springs and/or share with me your similar situation, it would be so helpful and would mean the world to me. Thank you.
Hi. I have just found this site and it is great to hear from other people.
I have just been told i am getting my j pouch out due to it failing. I just want to say thank you to everyone who is talking about there own experiences with there j pouch.The information is a great help. I am from Scotland and wish you all the very best.
Thanks so much and best of luck to you x
Hi Rob
Good luck with the j pouch. I am in UK and had my pouch defunctioned, in-situ. There are only a handful of surgeons in UK that have experience of pouch excision, prof Sue Clarke being one of the most experienced in this procedure. Strongly advise you make sure you have the right surgeon for this.
Matt
Thanks Matt.
Hi, was diagnosed with UC, colon removed and after recovery J-Pouch. Problems immediately and discovered I actually have Crohn’s. Did reversal back to ileostomy. Been 8 years mostly problem free. Doc wants me to have J-POUCH removed, but wonder risk of keeping or surgery. Thanks for sharing your stories.
Currently on a waiting list for J pouch extraction. Had it fitted 20 years ago but the last 5 years have had frequent bouts of pouch itis the pouch also kinked & stuck to my abdomen. Scar tissue is too dense to operate & fix those issues so the surgeon has recommended extraction. I’m due an appointment any time soon but very apprehensive as 60% of the time I’m reasonably ok and abtibiotics do help the symptoms. I’m not sure if my cramps are actually pouchitis or blockages from the twist & scar tissue. Part of me wants to cancel the extraction & carry on/put up with the blockages but I’m worried it could just burst