I had my jpouch removed and now have a permanent ostomy. Yes, the quality of my life has improved dramatically.  I can do more, eat more and I hurt less. Each day is no longer a guessing game. My ostomy is very similar to my temp end ileo, but I'm on iron and so gassier. It is a big decision about a permanent solution, so I gave it a year before I made mine.

Me.  I have had my ileo for three and a half months.  

As said above.  In the short  period of time I have had it my life has changed dramatically for the better.  No regrets. 

Best decision I made after suffering for two years with a pouch.  I also had my pouch removed.  

Richard. 

Mysticobra and Lambiepie,

did your surgeons give you the option of keeping the j pouch intact in case you changed your mind later? Mine has and I need to work out whether he should just take it out entirely as i understand the adhesion pain and output doesn't stop if he left it in.

I too am struggling with this, although I am pretty much committed to getting it done. I am taking way too many drugs for my own good just to manage the pain down to a dull roar.

Adhesion pain might not be improved by pouch removal. The pain will sometimes improve after *any* surgery, since the surgeon will cut any adhesions encountered, and might explore for additional ones (particularly if the problem is discussed ahead of time). Like any abdominal surgery, pouch removal or bypass can also cause additional adhesions.

If a pouch is functioning well, but adhesion pain is ruining your life, surgery just to cut the adhesions is usually wiser than abandoning the pouch.  Adhesion surgery doesn't always work, but it's the smallest surgery to treat the specific problem. 

Thanks Scott

The decision to remove the pouch is secondary to the decision to go to a permanent stoma. I have had severe issues with pouchitis, incontinence and abdominal pains. My quality of life in between sessions on the throne is only enhanced by taking prescribed drugs to control output and minimise pain. Somehow I am able to work, but only with an understanding boss who lets me work from home when appropriate, and when visiting clients working through the discomfort and making excuses to relieve myself as frequently as possible.

In short I am asking if it's better to leave it the pouch intact or remove it when I have my surgery.

cheers

Richard

I had no interest in ever having the J pouch reconnected but I wanted quick relief from the problems I had from my J pouch so I made what was in hind sight a mistake. My experience was to first go from a J pouch to end ileo with pouch left intact, in place. This did not work for me as I had  ever increasing secretions from the abandoned pouch. They were difficult to control. Diversion colitis is the name usually given to this problem but the usual UC drugs didnt help me.  Additionally, the pouch  remaining in place put tension on the stoma and did not allow for a very good stoma (close to flush). After 6 months or so I had the abandoned pouch removed, stoma  reworked and everything has been good since, been 3  years or so since the last surgery to remove the pouch.  But it was an extra surgery, from my experience if there is no "future" for the J pouch I would get it all done at once and just move on. Good luck.

RDSmith posted:

Mysticobra and Lambiepie,

did your surgeons give you the option of keeping the j pouch intact in case you changed your mind later? Mine has and I need to work out whether he should just take it out entirely as i understand the adhesion pain and output doesn't stop if he left it in.

I too am struggling with this, although I am pretty much committed to getting it done. I am taking way too many drugs for my own good just to manage the pain down to a dull roar.

No.  My surgeon would not even do the surgery unless I agreed to have it removed.  I know why now... Deep down I knew why then too but didn't want to come to terms with it and let it drag on.  It was just gonna be there causing more problems while trying to adjust to living with an ileo.  So no.  She wouldn't even consider leaving it in and if I wanted it in she advised I find another to do it.  I was in no shape to be running around looking for someone. I was really running out of time.  

It's done.. It's gone.. I don't regret any of it. 

Good luck on your decision. It's  not an easy one.  But for me... I just had to jump in and do it.... I had to quit wasting time.  I was only getting worse. 

Richard. 

RDSmith posted:

Mysticobra and Lambiepie,

did your surgeons give you the option of keeping the j pouch intact in case you changed your mind later? Mine has and I need to work out whether he should just take it out entirely as i understand the adhesion pain and output doesn't stop if he left it in.

I too am struggling with this, although I am pretty much committed to getting it done. I am taking way too many drugs for my own good just to manage the pain down to a dull roar.

Same with me. My surgeon would not do the surgery without jpouch removal. He explained the permanence, answered all of my hundreds of questions and I went ahead. I needed peace and to live for right now and I never wanted anything to do with my butt or excessive time in the bathroom ever again! I knew that this was the right decision for me.

I had my disconnect in January. Love my stoma! My surgeon recommended leaving the pouch in, not in case I change my mind, but for very specific healing reasons. I know I might have to have it removed at a future date but, right now, the stoma is working great, I am eating pretty much whatever I want, and I am exercising regularly for the first time in years! I love it.

Gin

GinLyn posted:

I had my disconnect in January. Love my stoma! My surgeon recommended leaving the pouch in, not in case I change my mind, but for very specific healing reasons. I know I might have to have it removed at a future date but, right now, the stoma is working great, I am eating pretty much whatever I want, and I am exercising regularly for the first time in years! I love it.

Gin

Hi Gin

thanks, you are exactly who I wanted to hear from.

Can you tell me about why you had the disconnect?

Also are you having any issues with the pouch remaining in place?

What and how frequent do you have to empty the discharge?

Is it a loop or end stoma?

Are you experiencing any of the pre disconnect symptoms?

do you still have to take drugs for the pouch to behave?

Sorry, so many questions I have that the doc can't honestly answer because he hasn't been through it.

Cheers

Richard

i went from a very troublesome j to a k pouch and am so very happy with it.  the k isn't for everybody, but when the j has failed it offers an option to the ileostomy. 

when i spoke with the docs about having an ileostomy--before i knew about the k--i was told the j had to come out.  why?  i never found out, but i suspect they thought i was buying time to have it re-hooked up.  when i had a temp one i was told some of the problems of leakage were because it wasn't perm and the j was dragging it down.  good luck in making your decision.  it's tough.  we are here for support and encouragement!!  keep us posted please,  janet

If you get a big enough ileostomy bag I think you'll be comfortable enough to lead a normal life. The only issue with a bag is constantly changing it, going through safety checks and constantly dealing with peoples curiosity about your bag. As you know it does tend to smell and so you might have to flush the toilet twice or thrice to get rid of the foul odour.

But comfort wise i enjoyed it knowing i had no urgency, I suppose when we reach middle age and we have a settled life and don't care as much about our appearance we might be more comfortable with a ostomy bag than a j pouch that's being problematic. 

I would be more comfortable doing a triathlon with an end ileostomy than a j pouch. Knowing my bathroom trips would be less frequent.

Well tomorrow (Sat25Jun) is the day I have my pouch removed. After yet another night of broken sleep and trips to the dunny, I am thinking forward past the surgery and recovery when I can actually sleep all night. I will not miss my pouch, it has been a good servant for at least 8 of the last 10 years, and I can say goodbye also to at least half of the cocktail of medications.

Thanks everyone for your help and support, and I will return with my own experience, as detailed as I can remember it.

Oh Richard.. You are in my thoughts! Best of luck with the recovery. Keep this group informed of how you are, if you can.

Hi everyone, I am still in hospital but on the mend. My surgery went well, although a couple of things didn't go as planned. 

Firstly, when he opened me up he found so many adhesions, and a lot to some pretty vital organs, that he was tempted to close without doing anything. However, he had the good sense to discuss it with my missus before making a deacision. They both agreed I would be pretty pissed off if that happened, which was the correct call, so he proceeded with the ileostomy, but left the j pouch intact, albeit stapled and disconnected. He also sited the stoma on the left hand side of my belly button, even though we agreed the best site was the old stoma site on the right. He said that this was because it was the most natural place for it given the position of the ileum.

Anyway the end result is I still have a pouch which may or may not be reconnected in future, as he says it is essentially healthy. He said I wil have output from this maybe 2 times a day, but will be the same urgency as normal output so I will have plenty of notice.

He also said that he pulled and fixed the muscle across from the old site because it had bulged over 10 years, so it is a little tender there right now. Otherwise I am mobile and independent 3 days after surgery, and look like being home for the weekend.

I can feel the difference already, no abdominal cramping and tension from having to hold back the lava. My bum has been enjoying the inactivity and apart from the surgery pain I am pretty well pain free. I can already see me doing things that I could or would never have done before, so my outlook is very positive. 

I am hoping too this will improve my relationship with my wife, who after 30 years, is still by my side, and after a pretty awful few years recently, I can't imagine why she is still with me. She has been my rock and without her I would never have made it this far.

Thanks to everyone who has helped me to this point, and now having been through it I can advise anyone of my experience if anyone is interested.

take care 

Congratulations Richard! 

I too after having it done noticed a difference in that my midsection was so relaxed.  Although painful.  But through all that I could feel a difference. 

Good luck! 

Delighted to hear the good news Richard! Wishing you a speedy post surgery recovery!!  

 Congratulations on your surgery. How wonderful to have a devoted partner like you do!  Keep up the pelvic floor exercises if you ever have the J reconnected. Janet

Onward and nice and easy upward, Richard!

Hello again,

it has been some time since I posted last, so I wanted to update you all on my progress.

right now I am just over three months post surgery and things have settled down. My peri stromal skin is still irritated because my stoma aperture is pointing at about 7 o'clock and recessed, so output is always onto that area of skin. The bad rash and skin damage has abated to a small section around the base of the stoma which I think will be permanent. Using a powder  at every bag change, but I also need to get off the blood thinners I have been on for a post surgical DVT, which is gone now. Hopefully the open wound will heal a little more.

i still have abdominal pain where the surgeon played around a little at the site of the old stoma from 10 years ago, removed some adhesions and I am still on pain meds for that. Otherwise drug free.

i have named my appliance and stoma after our politicians. So the stoma is currently our Prime Minister Malcolm Turnbull because he spurts crap, the appliance is called Bill Shorten, the leader of the opposition, because he is full of crap, and because I still have a j-pouch I have named him Tony Abbot as the former Prime Minister, still producing output but nothing of substance. I realise that as we change leaders I will need to update the names, but it is a lot easier to tell my wife I have to empty Bill, or Mal is quite active than to use the real terms!!

anyway, just thought that I would check in and let you know what has happened. My life is still a little toilet oriented, but without the constant pain I was having, and no drugs! Looking forward to reducing the surgery pain, and skin irritation as time goes on.

i would like to hear anyone's thoughts on peri stromal skin care, or coping with the mucus and liquid j pouch output , which in my situation is only really a problem at night when I relax certain muscles down there...

cheers ears...

Richard, glad to hear you are doing well. I am having surgery next month for an end ileo and my surgeon too suggest I leave my J pouch in. My question to you is how much out put are you have each day from the abandoned pouch? I originally wanted to have my pouch removed but my surgeon thinks we should leave it in. 

thanks, 

Nick

nmill28 posted:

Richard, glad to hear you are doing well. I am having surgery next month for an end ileo and my surgeon too suggest I leave my J pouch in. My question to you is how much out put are you have each day from the abandoned pouch? I originally wanted to have my pouch removed but my surgeon thinks we should leave it in. 

thanks, 

Nick

Hi Nick

I wanted Tony removed completely and my surgeon agreed to this, however during surgery he found that there were too many adhesions to too many vital bits down there to remove him safely. However he said if there was cancer involved then he definitely would have taken the risk.

In fact, he opened me up and found so many adhesions that he stopped and went out of the operating theatre to consult with my wife as to whether to proceed with the end ileo. Thankfully she advised him to go ahead, because I would be more pissed off if I went in there for nothing, but also left it to him regarding leaving Tony intact. I also had a complication with my bladder being so distended that he had to coming up through my back passage to confirm it actually was my bladder, which was worrying.

To your actual question then ... on my worst day I have an urge to empty Tony 3-4 times a day, including a pre-bedtime sitting to avoid overnight leakage, but on a good day I only have to do the pre-bedtime ritual. I have had a few accidents overnight because I am so relaxed that I leak... but a good incontinence pad helps manage that too. 

Further to naming my stoma Mal and my appliance Bill, I also named my J Pouch after Tony Abbot, our former Prime Minister. Still producing output, but nothing of substance!!

Good luck with your surgery, I hope you have a complication free procedure. With my various issues, I was on the table for 8 hours... but probably should have been only 4-5. Pain management for me this time was completely different. I was up and out of bed the day after, but took a backward step on day 4. That was mostly due to the pain doctor who didn't have a clue!! I changed to a trusted pain doctor from previous surgeries and things improved dramatically!!

Hope all goes well mate, just keep thinking that it could be worse, and that you have to play the hand you are dealt!!

I think surgeons may sometimes recommend leaving the pouch in because they're unfamiliar with the removal procedure. I guess you could ask if that's the reason. Pouch removal can be tricky, best done by someone experienced at it.

Thanks Richard for the info. I'm looking forward to having this done and moving on with my life.

Scott, my surgeon is very experienced she just said that since they were just down there earlier this year setting everything up she would rather not risk anything else happening at this time. I'm ok with that and I think I'll be able to manage any output.

Thanks again! 

Nick

Hello again. 

I had mine removed but only because it was in there only 26 plus months.  So what I am guessing it didn't have time to adhere to anything.  Of course we all know the longer it's in the the more problems removing it would be. 

My surgeon as I have said before would not give me an ileo if I did not agree to remove it.  I am glad she did.  It never worked and caused only grief for me.  I am glad she could remove it.  I should have went straight to the ileo.  But we all want to avoid that.  So I went for a pouch.  But it want in the cards for me.  I know that now. 

I wish you the best.  You have to have the confidence that you have with your surgeon.  If she-he did the procedure who else would know what's going on it there.  

I had all the confidence in the world with mine.  And she was right.  I am in a good place now.  I hope that you will be to. 

Richard. 

claire posted:

Thanks for initiating this thread Ashley! I ponder whether to say good bye to mine.. But my pouch is actually healthy ! The issue is im taking humira and Aziothiaprine just to keep my pouch (perianal disease otherwise).. Cipro left me with severe problems in my arms and Muscles and overall I just feel like all the drugs are hacking away at my quality of life. So hard to know what to do! Especially as pouch is healthy..

i wish you well with your decisions

Hi Claire

just wondering whether you did follow through with the removal of your J-pouch?

I've had my pouch for the last 21 years with no real problems until last year when a perianal abscess turned into a fistula, after numerous operations they decided to put me onto Humira which helped but the abscess has now returned. I'm 51 years of age and seriously thinking of have the pouch removed so I can be free of pain, reduce the  meds and eat foods I enjoy without worrying about where the next toilet is.

Regards Jason (Australia)

Hi Jason, please feel free to PM me

Hi Jason

Where abouts are you in Australia? I had surgery in Randwick and Prince of Wales Private, but I live in Wollongong.

Happy to have a chat with you mate!

Cheers

Richard

Hi Richard

I live in Melbourne but was planning to move to Daylesford where we have a hobby farm, but due to on going issues with my J-pouch and not knowing what the future holds we have decided to sell and stay in Melbourne where we are close to specialist and hospitals. I'm in two minds whether I should persevere with the J-pouch or move to a permanent ileostomy bag........ bloody hard decision hence why I joined this forum. How are you travelling now since your J-pouch removal?

Cheers, Jason.

Jason. 

I don't travel. 

But if if I did I would have zero problems with my ileo. 

If I had my pouch I would. I did. Just driving home from work was a problem. Now that I have an ileo. I have no problems.  I'm fixed.  The plumber fixed my problem.  Completely. 

I am one of the few that can say I'm done. Done with it all.  Surgeries. Meds.  Worrying about going to the bathroom. Anywhere. Including on myself.  Done. Done done. 

If I did travel. I could do it easily. 

It is a very very hard decision. But we know when we are there. And it's still a hard decision. Stubbornness.  But once on this side I know now I should have done it sooner.  Everyone is different. Different outcomes. 

I'm fortunate. 

Good luck. 

Richard. 

Hey Jason

I have to agree with Mysticobra, you will know when it is time. When you cannot see yourself dealing with the pain and suffering any longer. I struggled with the decision for well over 12 months before I realised I was spending as much time on the dunny as I was when I had UC, and the pain I had was foetal position stuff. My surgeon actually resisted my requests for a long while until he realised the pain was not temporary, and bouts of pouchitis were becoming one long continuous event.

Now the downside, and yes there are cons, but on balance having the stoma is much much better. Firstly, you have to change your appliance regularly. Mine is daily because I have an awful skin irritation below the stoma, which will most likley never clear up because of the aperture of the stoma being under the skin fold. That is not normal, but a possibility, depending on how much ileum you have left after the J-Pouch and any adhesions you have from the surgery. No adhesions means a better prognosis.

Most people I have 'heard' from on this site have days without needing a change. My stoma doesnt normally allow me to go more than 2 days at best. You also need to get the bag that suits you, and all the other bits. Listen to the stoma nurse but eventually it is your decision. There are lots of products out there, and make no mistake, it is business for them, so they want you to use theirs. As long as you know what is good for you then that is a great start. Hygiene is also important, keep eveything clean and wash your hands before and after.

Risk of hernia is greater, although you probably have that already from you original surgery. My risk is doubly so because the surgeon couldn't place this stoma in the same site as my temporary one from 10 years previously (11 now). Of all fo the inconveniences and pains I have had, that has got to be my number one gripe. Cannot lift more than 10-20 kg wihtout some support, but definitely avoid anything over 20 kg.

My surgeon was unable to remove my J Pouch as well, due to the amount of adhesions, so I also have to deal with continuous output from the back end. Again, not a normal outcome, but possible if you have adhesions. I am not trying to scare you out of it, in fact I would encourage you to do it, however it is your decision, and I can only relate my experiences.

On balance, I am way way better than where I was a year ago (1 month before surgery). I am still low dose pain meds for the adhesions pulling here and there, and the excoriated peristomal skin. But I am not on any other meds. My other big problem, which is entirely controllable, is my now unrestricted diet. I can eat anything I want, and I have. I now need to lose some weight, as it is making my stoma care a little more difficult.

Swimming is another thing I have to manage carefully. Water and the appliance adhesive are not compatible, and I have had issues. Getting it wet in the shower is OK, but swimming means I need to change my bag as soon as I can afterward. Even a bath is not worth it. Again my own experiences, and others may not find this an issue.

I have told you mainly about the pitfalls, but they are ALL manageable, moreso than the J Pouch issues. There are many many benefits which have been mentioned by most here. Toilet proximity becomes less important, and although you still have to empty the bag, it is not as urgent. The pain is gone and the drugs are gone. I was sickly and grey from the diet I was on to minimise the problems, so being healthier and eating well is a major benefit. My wife also is happier because it doesnt mean separate meals for me, and we can eat out and go to concerts, and walk on the beach, and go hiking etc etc.

I am actually in Melbourne on and off over the two months or so for work. If you wanted to catch up face to face I am happy to meet you. Let me know and we can arrange to meet in the city or wherever.

If you have any specific questions or just want a chinwag with someone who has been through it, give me a shout.

Cheers

Richard

Thanks Richard and Mysticobra for your detailed posts, very much appreciated. It sounds like everyone has different experiences and outcomes but at the end of the day we are all trying to improve our quality of life.The pros and cons you have mentioned has answered alot of queries that I had, thanks again.

Cheers,

Jason.

No Problem Jason, you are in the right place to talk to those who have been through it, but differently. I have never let my illness or resultant conditions ever stop me from travelling, working and all the other things in my life. As I said the only impediment is my restriction on lifting. I do risk it every now and then, but only with a good strong hernia support garment.

Reach out if you want a chat mate

Cheers

Richard

Jason351 posted:

Hi Richard

I live in Melbourne but was planning to move to Daylesford where we have a hobby farm, but due to on going issues with my J-pouch and not knowing what the future holds we have decided to sell and stay in Melbourne where we are close to specialist and hospitals. I'm in two minds whether I should persevere with the J-pouch or move to a permanent ileostomy bag........ bloody hard decision hence why I joined this forum. How are you travelling now since your J-pouch removal?

Cheers, Jason.

 

Hello Jason,

My name is Sarah and I live in Castlemaine. I also have a malfunctioning j-pouch. If you feel like getting together with someone who know what it is like for a chat, feel free to get in touch with me. You can send me a private message on this site (but I don't visit very often here). In fact, I will message you my email address. Feel free to get in touch.

Cheers,

Sarah

Hi

I ended up in emergency early this morning due to the abscess rupturing. Just spoke to the colorectal surgeon who will be performing an internal examination this Tuesday. He's of the opinion that the j-pouch might be at the end of it's life and that I should be seriously considering a permanent ielostomy bag...... what the hell. He mentioned the two options leave the j-pouch or have it removed. So I have some thinking to do over the next week. I didn't think I would be making this decision so soon but reading other people's story's on this forum will help immensely.

cheers,

Jason (That's Life).

Hi Jason

Sorry to hear you're in the wars mate, but looks like one decision is out of your hands. I would strongly recommend that you have the little bugger removed. As one who had that decision taken out of my hands,  I have to deal with daily output from my JPouch even though it is disconnected. Every 6 weeks or so I have to flush it out with a lovely Fleet enema, which brings back the pain from before my surgery.

My surgeon was reluctant to remove it once he saw all of the adhesions to other vital bits, and he almost cancelled the whole procedure. He consulted my wife mid surgery for some guidance, and she correctly advised him to continue but that he could be the judge on the JPouch removal. 

Again a personal decision, but I still recommend having it removed. All those who have done so on this site have not regretted it. Having said that there are probably just as many who dont have any problems with leaving it in.

If it is giving you curry now then most likely will not stop if left in. It is still active and alive even though disconnected. I still get inflammation and some horrible output. 

Does your surgeon have an opinion on it?

Again happy to have a chat any time, 

Cheers 

Richard 

Thanks Richard, I really appreciate your comments, the surgeon said he will discuss my options after he goes in with the scope next Tuesday so I will have to until then.

Cheers,

Jason