Trying to decide between a permanent ostomy or a j-pouch

I have had UC since 2005, throughout the years I have achieved remission 4 times, and all times for less than a year each. After many medications/ treatments.. I have decided I have been ill long enough and have elected to have my angry colon removed (5-31-18). I have considered agreeing to one surgery and having a permanent ostomy, but I have also been considering the j-pouch, as to have a bit more normalcy to life (eventually. I realize the healing takes quite some time).  It seems hard to find positive feedback on the pouch and that makes me very nervous to attempt this route. Is there anyone out there who has good things to say about it, please share. This is a big decision and I'm so unsure what to do. 

 

Original Post

I was one of the first to get a j pouch at the Mayo Clinic.  Although I experienced a high emptying frequency, butt burn and some leakage, I felt that this was much better than having an ileostomy with its various issues.  During the 30 years I had the j pouch, I was able to ski the Rockies, participate in equestrian competitions, travel abroad and experience intimacy.  These activities would have been compromised if I had the bag.  A high percentage of people have acceptable to excellent results with a j pouch, but these people rarely visit these message boards.

Unfortunately, I had recurrent high grade dysplasia and a malignant polyp in the anal canal that made pouch removal necessary.  Since I did not want to be stuck with the bag (pun intended), I opted to get a BCIR, an internal pouch procedure that does not require an external bag and is easily emptied at your convenience 3-5 times a day using a small plastic catheter.  The k pouch functions in the same way.  There is lots of information available on the internet about both of these procedures.  They both have a high success rate and high user satisfaction.  You may want to consider these alternatives if you decide against the j pouch.  Please feel free to send me a PM if you have any questions.

Bill

The satisfaction rates are very similar for a J-pouch and an external ileostomy. Most people with good outcomes are not where they’d hear your question - they’re just living their life, with a surgical solution that’s not generally obvious (even an external appliance is invisible when you’re wearing clothes). I have never regretted my J-pouch, and like BillV it enabled me to do things that an external appliance might not have been happy with. I scuba dive and teach Ju-Jitsu, both of which would have been more difficult (or maybe impossible) with a bag. I hadn’t contemplated either activity when I had my surgery, so in my case the J-pouch left more doors open.

Thank you Scott, Bill, and Jeane for your response. I think you may be right about the people who have great experiences with the pouch... they are probably not the ones here talking through the issues, but enjoying life. I have only a couple weeks left before my surgery and I appreciate your input.. I intend to think this through very well. It does make me very happy to hear the wonderful things you have done without the struggle of constant restroom running... I look forward to those days myself!!!

J pouch surgery is usually done in 2 to 3 different stages or surgeries, so you will have an ileostomy to begin with either way. This will give you a sample of what life may be like with an ileo. Either way you go, you will feel better because you won't have UC anymore. I know how terrible that can be. I never had a remission. All pouches can have their challenges, and everyones body reacts to them differently. I know my last surgery is next Tuesday and I have never looked back since my first one. I knew that if I didn't go for it, I'd always wonder "what if". Good luck with whatever you decide. The unknown is always scary. 

Thank you! What I have been trying to do is make a decision on whether or not I want a permanent ostomy or go for the 2-3 step and get the j-pouch. I am a little upset about the idea of missing so much work with multiple surgeries. I am a single mother with no sick time that would cover me there... so the surgeon said he could always take the colon and rectum all at once, giving me one 4-6 tome frame off work and that’s that... but f I do that, there is no chance of reconnection later. 

You could have him leave the small piece of rectum that they use to connect the j pouch for a later time if you don't think you can make up your mind up soon. For me it was a no brainier. I really don't want to have a permanent ileo. There are people on this site that do have them and they are fine with them. All pouches, weather it is an ileo, j pouch, k pouch, or BCIR, they all have advantages and sometime draw backs. I guess you have to decide what is important to you personally. 

 

I had my ileostomy for 9 years and other than a few minor appliance leakage issues, exhaustion and the odd accident during my sleep, I lead an active and fulfilling life; in the words of one of my Surgeons " I'd adapted well to life with an ileostomy" and I still chose to have a J Pouch.

My J Pouch was created June 2014 and my takedown surgery to reconnect was January 2015 and life without the colostomy is absolutely wonderful.

I don't know how things work where you are but maybe your Surgeon is applying undue pressure while you contemplate such a huge decision. 

My bowel was removed back in 2005 due to UC, with the intention of reconnection 6 or 7 months later, that is, until pathology results revealed I had Crohn's rather than UC; at the time, most, if not all Hospitals within the UK would not perform reconnection surgery on a patient diagnosed with Crohn's.

So, as I was able to have a J pouch created after 9 years, I can't see why you must make such a huge decision in a matter of weeks.

Tell your surgeon, it's you and not he/she who will have to live with the results of such a decision; therefore, it shouldn't be taken lightly.

During my 9 years with the ileostomy, other than taking Loperamide to slow and thicken my output and Omeprazole for acid reflux, I was medication and flare up free, which kinda proved I didn't actually suffer from Crohn's.

I was re diagnosed with indeterminate Colitis; and  therefore, qualified for J Pouch surgery.

Opting for a J pouch is the best decision I've ever made; although I'm male, body image was a huge reason as to why I disliked the colostomy. 

A J pouch, is often regarded as the new normal and for myself; my new normal is 98% or normal.

I now use the toilet like everyone else, no supplies to be carried around or special wash routine, the only exception are the number of visits to the toilet during a day, which isn't an issue and so easy to accommodate;, there's never any urgency, leaks or accidents; life couldn't be better.

I require only 3-4 BM per day, never less than 2 and very very rarely more than 5, when it is, it's normally due to what I've ate.

Visits to the bathroom are hours and hours apart, thus appearing perfectly normal to work colleagues and those around and if necassary, can also be controlled by use of Loperamide, which I don't actually need, but I do notice a beneficial difference when taken.

No disturbed sleep and night time bathroom visits either, which can also be controlled by use of Loperamide. 

 As I said earlier, such a decision shouldn't be taken lightly; opt for the ileostomy but retain the rectal stump, this will provide time to recover and prepare for the next procedure.

If the surgeon who removed my bowel also removed my rectum at the same time, then I wouldn't  have been able to have a J Pouch 9 years later. 

 

Hello, Mkat73,

That is a big decision for you to make by the end of this month. I was under a bit of pressure to go with a permanent ostomy by my first surgeon. He was very supportive when I was still uneasy and undecided after a few weeks. He referred me to another surgeon who could do the tricky (in my situation) surgery and I was given a j pouch. I am very happy with my j pouch. The first eight months were uncomfortable, but everything settled down and I have no issues that can't be easily managed.

Remember that a permanent ostomy also means permanent expenses every month to buy all the equipment and supplies you will need. This could go on for months or years, if it's a temporary ostomy, or a lifetime.  If you don't have health insurance that covers ostomy supplies it can be a real financial consideration. There are people who live comfortably and very well with a permanent ostomy. Check the topic section for ostomy stories. Ask your surgeon for his patients that you can talk with over the phone, ostomates and j pouchers - recent patients and long-term patients - to see how it is for them. 

Hello. 

You don't have decide an ending now. 

I had a j pouch but in short it made things worse over two years and had it removed.  I have an end ileo (permanent ) now. But. It's not permanent if I don't want it to be. I still have my rectum intact and could try another pouch in the future. I'm not gonna do it because the end ileo is fine. 

Your getting good advice here. And you are taking that advice and using it. That's smart. And the thing to do. 

It is a big decision. But it's yours. That's the hard part. How it will be where you end up. Scarey. 

I just threw my two cents in.  Age is a factor. If I were younger(I'm 62) I would consider doing it again. But this works well and I'm not sick anymore. And that is where I want to be.  Well. Not sick. Never in my wildest dreams would I have thought I'd be where I am and ok with it boggles my mind sometimes. 

Like I said I'm not sick. I like to say it was my cure. It ended all the misery. And it is that. Miserable to live with uc. 

Richard  

here's my 2 cents, based on having a problematic j pouch, which eventually i had removed for the k pouch.  i had to have an ileostomy for a year after my initial j pouch surgery, due to a snafu, and even with the problematic j pouch i greatly preferred the j.  even with the extra efforts w the k, i prefer it over the ileostomy.

another 2 cents and this is in absolute respect of this fantastic, helpful forum--for me it is family,   generally--but not always--people who have problems participate, and subsequently you read about the small percentage of people who have problems with their j pouch.  that makes sense as people who function perfectly well w their j don't even think of asking for advice once they have gotten over the initial decision.  some people, such as richard, still participate, for which i am always grateful.  as i said, we are family.  

keep us posted on your decision.  perhaps get more info from the stoma nurses as they often have make more time to discuss issues and often have more info.   where are you located?  that too can make a difference, sad to say in such a wealthy nation as ours.....  be well, janet

Hi MIKAT73.  I have had my j-pouch for almost two years.  I had a 3 step procedure, which started a month after my 61st birthday and completed prior to my turning 62. I am, as of now, one of those who has pretty good success, so far.  Yes, there are small inconveniences, but nothing like UC.  My procedure was completed laporiscopically, with good recoveries.  I was lucky that I could take off what time I needed, due to my pensions having already started.  I also had an employer who let me come back in between surgeries with shortened hours.  I did fine with the ostomies, an end for 7 months, and a loop for 8 weeks before takedown.  It is a big decision to take on and very individual as far as circumstances.  Good luck on your decision.  Glad, I chose the j-pouch!

I just want to say thank you so much to all of you who have responded. I had a conversation with the surgeon on Friday and I am indeed going to have the total colectomy May 31st, but they will leave part of the rectum so that I may try the j-pouch when he feels I am ready for that surgery. :-) I know all of this is scary, but I admit I am excited at the idea that my UC will be silenced for a bit, even if I have to have an ostomy for it to happen... it has been a very rough road, and I am done being ill all the time. I choose health and happiness! 

I had my colectomy 6 years ago, lived with an end ileostomy for that time. It GAVE me my life back. I heavily contemplated ever having surgery again. My surgeon was up front and honest. He told me I was a great candidate so im now on step 2 of 3 with loop ileo now. Its a personal decision. Satisfaction rates between permanent ileo and jpouch are near identical in literature. Both have their problems and niches (although i havent used my pouch yet) but anything is better than where you are. Its really a way for people to feel "normal" again as far as pooping the way God designed us but it was a tough decision for me because i didnt "hate the bag." I did nearly anything I wanted to. I opted for the jpouch well informed, by a good surgeon who wasnt trying to sell me on a surgery and chose to go for it. That whole "normalcy" thing, as well as being young and not wanting to wonder "what if" and the satisfaction rates over time with SOME longer term studies. Basically get well informed, pick a heavily experienced surgeon, and choose what feels best for you.

 

- Native

So glad you are leaving your options opened. I can't imagine having to my a choice that life changing in such a short period of time. That is crazy. My take down surgery is tomorrow . I too had sever UC. It was horrible. I felt instantly better after that first surgery. Good luck to you on your journey, it truly is that. Mine ends tomorrow and a new one begins. Never been so excited about a surgery in my life. There was never a question about the j pouch for me. I just don't want to have an ostomy for the rest of my life. I could live with one if I had to, I've proven that to myself, I just don't want to. Again good luck and remember to keep your eye on the prize. 

Aimee

 

aimee well wishes from me also.  i recall the excitement when i had my take down.  had the bag for a year, yes i could do it--even did an assignment in kosova in 2000- but preferred the j and now the k.

 

mkat--are they going to build the j pouch at this time?  talk to your doctor about that.  most do.  also, you'll need to keep up with pelvic floor exercises in order retain control when the j is functioning.   big decisions ahead.  get as much info as possible.  janet

Janet- my surgery on the 31st is the colectomy only, I didn’t realize they could do more at once..? I should check into that. And I think there is more information I’m missing, I haven’t read about keeping up with pelvic floor exercises.  

Hoping your decision works best.  My j pouch has been in place for 18 years.  It is wonderful, it did take a long time. My dr said a 3year recovery and that was true. After my 8 weeks off after surgery I went back to work   I was on pain meds and lomotil for about 9-10 months.  Pain meds subsided during that time. I used calmoseptine cream for butt burns. I likened my body getting used to the pouch like a baby getting used to stool forming and awareness of poops.i Cruise, walked in the Mideast, visited European countries. All while working full time.  I feel it gave me freedom to be normalized.

I've only had my J pouch, since 2015 and its been a phenomenal success.

I've never experienced the dreaded butt burn either.

As mentioned in my previous post, I had my ileostomy for 9 years and prior to my J pouch creation, no one ever suggested pelvic floor exercises to retain control, so never done any; so maybe such an exercise is not really necessary, unless there's a difference between the sexes,, I don't know ( I'm male).

STRANGE- thank you. I’m going to do a bit of research on the pelvic floor exercises.. it could very well be a gender thing, as I have heard that more women lose “control” over those muscles than men. I hope when the day comes for my j pouch that it’s successful as well! 

MKAT73.... J pouch surgery, in the majority of cases is actually very successful, often quoted as being a 90-95% success rate and as high 97% at specialising Hospitals: these were the figures I read online and similar to what was stated within leaflets and literature provided by the Hospitals of my Consultant and Surgeons when I was considering pouch surgery.

However, you need to also consider, that on web forums such as this or the likes, probably 80% of forum member who opted for J pouch surgery have probably encountered serious complications or pouch failure.

10 years w/j-pouch. Life not a whole lot different from 40 years of UC; 8-10 bm's per day and recurring pouchitis but MUCH more control and no scary blood in the toilet. Hope to never have complications requiring removal but will deal with it if/when that happens. Ask your doc about ostomy support groups in your area. Amongst other services, they could help offset cost of supplies with free items. My best to you for a better, happier and NEW life.

I wish I could add to everyone's positivity and say having the J pouch was great, but after 13 months post takedown, the jury is still out. I had the additional misfortune of having a small fistula in the anal area that upon verification (MRI) that it would be OK to proceed with the surgery without complications, my surgeon opted to 'flay' it open so as to not become a chronic problem down the line. I'm assuming that was the right thing to do - he's very experienced in J Pouch surgeries (Mt. Sinai/NYC) but as my GI says, 'it definitely altered the landscape in there ). After my initial surgery (3 step) not feeling sick everyday anymore (mine was severe UC that ended up being classified after the pathology came back as Indeterminate Colitis) was fantastic, I must admit I felt like a new person the day I woke up from the 1st step surgery. And not having to run to the bathroom constantly is great; I can hold it as long as I want, it just starts to make me uncomfortable in the abdominal area along with an increasing headache, which is not fun, but it beats not making it to the bathroom in time. And not being on those absolutely terrible drugs (Humira/Ramicade) is a great thing also. Having said that...

The first 2 1/2 months after my 3rd step were the most painful and depressing of my life. Butt burn that literally made me cry day after day - that's hard for a guy to admit (and hoping that doesn't come off as sexist) - it was really bad. Took a while to calm down, but had 2 fissures to deal with also (1 has healed, the other still plagues me). But here it is a year later and I still have constant painful BM's (yes, the fissure has a large part to do with that, currently treating it with Nitro, hoping that works, but the pain isn't just in that fissure area). Some movements are pain free, I'll admit, but they are few and far between, and keeping BM's on the softer side rather than the harder side help, but mostly they are irritating/painful. Still using either Calmoseptine (that will become your best friend should you go for the J) or Aquaphor. To make matters worse, I still have constant leakage/seepage. Not a lot, mostly just brown colored liquid, but enough to stain to where I have to constantly wear a pad or something to absorb and not stain my underwear. I think that constant seepage adds to the problem everyday; I try to do kegels but most often stop as its just irritating flexing those muscles when your butt does not feel good.

It's changed my life dramatically, and not in a great way. I can't really go places for long periods of time due to the need to get to the bathroom after a few hours (or face the headache/gas thing), and if I do try to go long periods I end up in the bathroom for a bit of an extended period of time as I never seem to be able to fully evacuate, and like to use toilet paper that is wet, so having access to running water at that particular time is a challenge also. Or carry wet wipes, but the bathroom visit is still a long one, and that can be embarrassing anywhere but home. Also, if I stand for long periods it seems to increase the seepage, not to mention any heavy lifting, which also seems to increase it. I might be writing a more positive report were it not for the seepage, as it seems to exacerbate things. But I'm honestly trying to keep being positive that the fissure will eventually heal and the seepage will eventually stop, which would make me oh so happy. Having said that, it really has made me question my decision as I'm pretty depressed. My social life is down the tubes and my relationship with my girlfriend has suffered greatly - she has been living it with me for 5 years now, I couldn't ask more of anyone, she has been great, but it's worn her down to the point that I've basically backed out of things as I don't want to see her unhappy, she deserves better.

Looking back, were I mentally strong enough, I think I would have stopped at the bag. Felt great, almost normal, but had a really really really hard time with having that bag hanging off my abdomen. Mine was high, above the navel, so I don't think that helped. But I couldn't wait to get rid of it. Little did I know that getting rid of it just resulted in trading one set of problems for another.

Anyway, sorry for the length of the post, but just wanted to give you some things to think about as you go along your journey. Perhaps my story will improve - or perhaps I'm just one of the few whose J pouch is just not going to work out. Either way I wish you nothing but the best - it's a big decision. Be positive despite my story as yours may be have the opposite ending, in which case you will be very happy with a J pouch.

Scott

In regard to the last post; when assending a height or being rescued from a mountain side rock face, it's always advised to never look down.

In the majority of cases, j pouch surgery is very successful and if anyone was to err on the side of caution and not proceed through fear of potential complications, then they will never know the outcome or experience a life with a successful J pouch.

I had my colostomy for 9 years or thereabouts, leading a very active and fulfilling life; never did my colostomy encroach upon my training or everyeve activities.

However, although consealled I hated the bag and I can only imagine that  appearance and body image are much bigger factors to contemplate for a female.

Prior to my UC diagnosis and throughout my illness; for years, I attending gyms and weightlifed and although I was no Arnold Schwarzenegger, I was proud of my appearance and physique; first one to rip my shirt off in the sun or at the beach (you know the type), yet all that changed once I had the colostomy bag, I even stopped using showers and changing rooms at the gym, even though I always remained covered and maintained my modesty.

 

Ignoring the experiences of forum members who've endured complications is the best and only way forward.

There's many more receipiants of successful J pouch surgery; who are out there and leading fulfilling lifestyles, who don't visit web forums such as this; because they don't need to.

I had a two step ileostomy with a J-pouch created during the first step.  I surprised myself by adjusting so well to my ileostomy that I was reluctant to give it up and so I kept it for a full year.  It was a Godsend!  I could eat and drink whatever I wanted for the first time in years!  Crunchy veggies and salads became my go-to foods after having to deprive myself of them for years.  Once I figured out which ileostomy products worked best for me (much trial and error and help from an enterostomal nurse) I didn't need to change my baggie any more frequently than once weekly.  When my son convinced me to go ahead with the take down he reminded me that if I didn't like my pouch I could revert to another system.  I actually cried on the operating table and my surgeon told me I could still change my mind.  I told him to go ahead.  That was in 2002!  I love my J-pouch.  I especially love being able to eat and drink whatever I want and not to have to deal with all the paraphernalia maintaining an ileostomy requires. Best wishes!

CEEECEEE  I am getting takedown surgery on my pouch on 15 June. My loop ileostomy stoma is flush with my skin and it is to right of navel. I  have not enjoyed this temp stoma as it is hard to seal. Basically I burn all the time  with a "Bee sting" and I get  back cramps directly behind stoma.  I was glad to read your positive report.

I  came to UC late at age 59 subsequent to a C.Diff infection. At least with the ileostomy I have no more 20-30  urgent trips and I can sleep mostly thru the night

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