I'm sorry you're struggling with your J-pouch. Some folks who switch to an ileostomy have their pouches left in place, and some have them removed. Your surgeon might have an opinion about this. Here are a few things to think about:

1. A few months can drive you nuts, but it's early days in the life of a J-pouch. Things are likely to continue to improve, especially if you're thoughtfully working on whatever isn't working. You've been through a lot - are you giving up too soon?
2. A healthy remnant J-pouch can continue to produce some output, including the slippery mucus some people find very difficult to hold in.
3. A remnant J-pouch can develop diversion pouchitis, which you might have to deal with. Not everyone gets to ignore their remnant J-pouch, and some need another surgery to remove it.
4. Medications can cause problems, of course, including side effects and reminding ourselves of things we'd rather forget. Most of us will eventually need medicines for various problems in various body parts - a medication-free life is lovely, but it's generally temporary. People sometimes end up with a lot of misery just to avoid medications, and it's sometimes a poor trade-off.
5. If you proceed with this, make sure your surgeon creates an end ileostomy rather than a loop ileostomy. Loop ileostomies are much harder to deal with, and IMO should only be created temporarily.
6. J-pouch removal can sometimes be technically difficult, so it's important that you choose a surgeon who's experienced with that, unless you're certain that you'll be leaving the J-pouch in place.
7. Good luck! I hope whatever you choose goes perfectly!

Thanks Scott. That's very helpful. I'm just fed up already with the pouch and can't see any point persevering with it as I'd be ok with the stoma. Less hassle for me.

Before having surgery to remove your J pouch, I suggest that you get a second opinion from a doctor who specializes in treating pouch problems.  I had a condition that made j pouch removal necessary and i strongly did not want to have an end ileostomy with its associated issues.  I opted to get a continent ileostomy (BCIR).  I published an article in UOAA's magazine, The Phoenix, entitled, "Researching My Options". This article can be viewed on the Quality Life Association's web site (www.qla-ostomy.org) under the "Ostomy Options and Education" tab.  In my case, removal of my J pouch and creation of a BCIR was done in one operation.  I have had it for 10 years and it has given me a very good quality of life.

While you are on the QLA web site, check out the upcoming annual QLA Conference that will be held in Clearwater Beach, Florida in August. Anyone can attend and there will be presentations by a number of surgeons as well as many attendees that have continent ileostomies (BCIR and K pouch).  Please message me if you have any questions.

I had my jpouch 24 yrs before (emergency) disconnection; a year later I had the pouch removal.  Disconnection was done laproscopically (I was given an end ileostomy at this point).  As Scott mentioned, I did have the mucus discharge while disconnected - it was not controllable and was quite inconvenient.  The pouch removal is a big, open-abdomen surgery.  My back-side was closed up, but I had no big wound back there, as the surgeon closed it from the inside(?)   I had mine done at Cleveland Clinic (Dr. Hull), and was very pleased with the outcome.

I'd rather not have the pouch removed. Do you know if it is straightforward just to have it disconnected? I'd be fine with the stoma having tried the pouch and found it's not for me. Before I had the takedown I was fine and was well surely as the takedown is not a big surgery is it not fairly easy to just disconnect it again and give me a stoma? Why do so many people with pouch problems not just have it disconnected?

Just disconnecting the pouch should only be a temporary solution, see points 2 and 3 of Scott's list. That little thin and slimy output gets difficult to hold when your sphincter muscles get weaker by the time, with good chances for leakage.

Diversion colitis is a danger with a dead-end bowel / pouch. You should talk to an experienced surgeon about your options.

Perhaps you would also want to have a pouchoscopy before taking further steps. If there is inflammation, it can usually be treated effectively with a 10-day course of antibiotics. Many people with a pouch have long periods free of medication and only a flare up every some years.

You have opted for the pouch and undergone a lot of pain and effort. I would give it some more months and try to make it a success. Good luck.

Helena,

I suffered greatly for 6 months post takedown, including a week at thanksgiving where I never left the bathroom for 7 days.

I thought my pouch was failing and my GI even raised the possibility of going back to an ileo. I cut him off and said never.

I finally found the prescription medicine that was causing my pouch dysfunction.

once I eliminated the culprit, and btw diet and Imodium three times a day I began to recover.

please don’t give up!

Have a pouchoscopy and determine if there are any mechanical issues. If there are none, there are many strategies to manage the pouch.

removal and closure is a very very big deal. Going back into the pelvis with scar tissue and adhesions I think would be very risky.

you also have the option of the kpouch.

I think you have a number of steps to consider and take before giving up.

An ileostomy in the first place is simpler, but you've got great advice here on why  backing out of the j-pouch is more complicated.

I did well with my temporary loop ileostomy, too,  so had serious buyer's regret after take-down.  I experienced the same issues you describe - burning, difficulty emptying, pain if not very careful with diet, and really just despair at how much time in the bathroom.  

I think most of us don't get a thorough informed consent, expectations aren't reasonably set for what the post-op experience will be, so that "what have I done?" is probably pretty common  

For me, a pouchoscopy at 4 months after takedown identified some issues that were "fine-tuned", and antibiotics helped get things tuned around. But time and a lot of patience did most of the work.

Explore all options and good luck on whatever path is right for you.

It takes months (2 years for me) before you find an acceptable "new normal".  If it were me, I would give it some time before you decide to change back. Two months is very early in my humble opinion.

I am in the same position as you. I had my takedown in January and have been riddled with inflammation, discomfort, urgency and frequency ever since! I am strongly considering heading back for a permanent stoma as I never had any issues. I was left with a loop ileostomy for 3 years due to covid and hospital backlogs and even that with the constant skin irritations was better than this. My surgeon is terrible when it comes to keeping in touch and following up so feels like I’m left wondering what’s wrong and imagining the worst all the time! For reference I’m in the UK and this was done on the NHS at Peterborough hospital, I imagine if I had private healthcare things may be different. I’m just not sure I can face another 18months of “finding my new normal” !!

Hi. Robbisusd. I'm also in uk. Like you I don't feel I want to waste a lot of time now trying to get the pouch to work. I don't want to take medicined or have any more investigations etc to make the pouch work. Now I know what the pouch is like I just don't feel it is worth it. I think I had to experience it to know. I can't see why they can't just disconnect the pouch after all was easy to connect it. Will be speaking to the surgeon about this. Do you know if you can have yours disconnected?

I’m not sure. I have a pouchoscopy on Wednesday with my consultant surgeon so will talk to him. I was high risk for failure and/or sepsis because I had a hole in the pouch which needed clips to seal it up. This is another reason why I was left with loop ileostomy for 3 years, the whole time my surgeon said that if there’s issues there is always the option of a permanent stoma and he never suggested it to be a difficult switch back. I have also asked to be referred to St. Marks hospital as it’s a specialist bowel hospital so hopefully they’ll be able to sort it out. I’ll report back on Wednesday after my appointment

In my mind it should be like the first op (I had 3 stages) just removing the colon and leaving the rectum and having an end ileostomy created. I don’t mind them leaving the pouch in even if only temporary, I never had any issues before it was reconnected with leaking. I genuinely don’t see any upside to a j pouch, I had zero restrictions or issues with a stoma but I’m currently restricting my diet, I can’t go mountain biking, I’m tired all the time, constantly on the loo for long periods etc. I’m sure it’s a cheaper option to have this rather than supply bags and barrier sprays etc but all this for the sake of where my poo comes out…..not worth it for me.

Here’s my perspective; you guys are alot more mentally tougher than I will ever be!

durng my first 6 months when absolutely I was miserable with my pouch, I had a what if conversation with my surgeon.

he told me they can create a loop and remove later or do everything at once. In either case the pouch removal surgery is very tough. Going back into the pelvis takes a lot of surgical skill and is dangerous because of all the accumulated scar tissue.

Thankfully  my pouch is working fine, but I know it takes a lot of work and it’s not for everyone.

Yes I agree it's not worth it. I just cannot be bothered with the pain of 'making it work'. I also don't think as an NHS patient we have at all the level of service to support having this and never will. I can't see what the issue of disconnecting it is after all they asked me if i wanted it connected and if I'd said no I would have continued with my life with an ileo and a out of use pouch and I assume they wouldn't have followed me up ever.

Personally I knew it was time to remove.

You can go back and read my posts. History. I've had my ileo for over 7 years. I change once a week. Sometimes if I get a leak I'll change. But it's not often. So I'm super fortunate.  I think. 

The surgeon didn't even want to leave it in.  She said it would still cause Unforseen problems. So out it came and she said she had no problems removing it. I had it a bit over two years.

I felt immediately better after surgery.  I was sick as a dog.

I moved on. 

Only you can decide what to do and what you can live with.  Getting advice here is a good step. Ultimately it's up to you.

Richard.

P. S.

I've mentioned several times. She left everything in place to get another pouch.   I didn't get my rear end removed. She left an anal canal and sewed it from the inside. So even if you remove your pouch. Keep that in mind. You can try again later.

I won't.  At my age. I'm fine with what I have.

So I saw my surgeon today…. He didn’t want to discuss the possibility of a reversal yet as he believes the problems I am having are due to bacterial overgrowth because I have a fistula where my small intestine was joined back together going to my old stoma site wound. This apparently can cause mild pouch inflammation and an increase in frequency and urgency. I am booked for CT to gauge the size and route of the fistula and will no doubt require bowel resection to remove it. After that if there is no improvement in the pouches predictability, tolerance to stuff and my quality of life then he will discuss reversal.

I firmly believe that once you fix/repair any mechanical issues you will be in a better position to manage your pouch to a satisfactory state.

I think your surgeon’s approach is reasonable; as to let’s not give up on the pouch at this point in time.

Hi. Just wanted to post and update on here. I am booked in tomorrow to have a permanent stoma and disconnect my jpouch. Turns out I have very stubborn inflammation that antibiotics won’t control and I’m not prepared to cycle the NHS treatment list hoping something works. @helena I hope you are getting on better with yours or you have been able to get your situation on the right track!?!