To keep or to lose

Hey everyone!

  A very long time no hear!, but so many of you are on Facebook now, I rarely visit this site, but I’ll be using it an awful lot in the coming months, and here’s why. Most of you probably don’t know my story, if you look in my description, you’ll notice I’ve had a lot of operations and a lot of intestinal diversions, including five ileostomies, a J pouch, and 2 different K pouches (I’m currently on my second one),  but here’s my problem…… The nipple valve, a.k.a., the flap of skin inside the pouch that prevents stool from leaking out, is not working properly, allowing the pouch contents to empty, usually when I’m in bed, which is not a nice way to wake up covered in stool. My poor hubby, Freddy, bless his heart, has literally been covered in my stool, as I sit there like an idiot, bawling my eyes out, from shame and embarrassment. But he doesn’t even flinch, and is always there for me to help clean me up in the middle of the night and change the bedsheets (I always keep a protective pad on my side of the bed so the mattress isn’t soiled, just the bedding).  


  I’ve had this pouch since December 16, 2016,  however, since March of this year it started leaking just like the first one did.  Occasionally, for most people with a K pouch, a little leakage is normal as the nipple valve can slide out of position occasionally, but for me, it will leak for weeks, most often in bed, but now, during the day too. I never jump to  conclusions, as in the past it has leaked but then stopped after the valve finally goes back to its proper position. However, this year was much different, so I contacted my surgeon, Dr. Zane Cohen here in Toronto at Mount Sinai Hospital, to discuss my options.  We tried many different things under the assumption it was just a slipped valve or pouchitis putting a lot of pressure on the valve, but nothing worked and it kept leaking, so I finally decided to have yet another operation, number 34 for those of you that are counting, and go back to a permanent end ileostomy.


   Because I have had five ileostomies already, and have had major complications with every single one, namely, absolutely horrific infections that felt like I had battery acid being poured on my skin, I absolutely dread having another one, but this time, before I agreed to any operation, I got together with my stoma nurse. She gave me a sample of five different adhesive’s, to see which one doesn’t react with my skin.  I was shocked after I took them off after a week to see no redness at all, as apparently, they have changed the chemical formula of the adhesives to be much more comfortable and less irritating. 


  The skin on your abdomen was never intended to come in contact with stool which can be highly acidic, so I believe and my nurse agrees, that previously, I was not cutting the correct diameter in my flange before putting it on, allowing stool to leak under the flange and irritating the skin. But that is not the problem to which I am referring, my dilemma is, ever since I tried all those different products over a month ago, suddenly I have zero leakage whatsoever, which makes me question should I risk another surgery?


   You see, I only have 5% of my entire G.I. tract left, the surgery is the last one they can do as I don’t have enough intestine left for anything else, and if this surgery does not work I do not have enough of my own intestine left to have another operation, or to repair the problem, leaving me no choice but to go on permanent TPN, which, as far as I know,  can only keep somebody alive for about two years, essentially giving me a death sentence, and I’ll be damned if after everything I’ve been through, I allow that to happen. 


   So my dilemma is, do I assume the valve will continue to leak even though it hasn’t done so in a month, and have the operation, or, take the chance of living with my leaking K pouch, which has also managed to take me down to 160lbs from my previous 240lbs?  Either way there is great risk involved, and I’m not afraid of the surgery itself, but I am afraid of the mere fact that should anything go wrong I could die within two years, I am so lost right now.  With every other operation I never really worried because I knew there was always a way to repair it, but this is the first time that there’s no turning back, and that my life is literally on the line. Part of me cannot stand living with a pouch that could leak at any time, which, aside from being a complete nightmare in public, and extremely uncomfortable, and for whatever reason, is making me weaker, causing me to keep loosing weight no matter how much I try eating (I can only eat very small amounts, and nothing with fibre). But then, I worry if I removed my K pouch and go back to an ileostomy that fails, I could literally be sealing my own fate.



   For now, I’m booked for surgery on November 6th, but can still cancel up to one week before the date, which leaves me with very little time to make such a difficult decision. If you were me, would you keep the K pouch that you have no control over (Dr Cohen said that once a valve is that damaged, it will only get worse over time until I have no choice but to have it removed) or, would you go back to your 6th ileostomy, so you can live in peace, and hopefully, be able to eat like a normal person again? Please, give me your honest opinion, I need all the help I can get to decide this, 


Many thanks,

Eric 😫😫😫😫😫

Original Post

If it is working okay for now, I'm wondering what would be the rush to go forward with the surgery now?  If it will be surgery to change the K pouch to a regular end ileostomy, in my mind that is a kind of surgery that there isn't time pressure to get done right away because there will always be many surgeons who are capable to do that kind of surgery well (different than the problem we all have insofar as so few good surgeons left who are capable to do K pouch surgery well).  Insofar as my understanding of what you describe to be your situation, it looks like the only risk of postponing the surgery would be that you may have some more unpleasant leaking incidents before you are able to reschedule the surgery and have it done?  If so, then if I were you, I would cancel the surgery for now and enjoy the functioning non-leaking K pouch.  And then if it starts to leak again to a degree and with a frequency that is not tolerable, only then go forward and reschedule and have the surgery to convert it to an end ileostomy.


Sorry, I just re-read your post and only now first realize that although your K pouch is not presently leaking, you do still have  a problem regarding the food you can eat.  So that makes it a little more difficult to decide whether to postpone the surgery or not. I think that really depends on just how badly your life feels negatively impacted by the effect on the food (and amounts) you can eat.  As far as your weight loss, that would (in my mind) only be a factor if you think you are or will soon get to be dangerously underweight, and/or if you think you are not able to get sufficient nutrition with what and how little you can eat (if it does seem to be an imminent threat to your overall health due to the eating/nutrition issues).  I am really hoping that either way, no matter what your decision is, this is going to turn out okay for you.


Is there an option to wear a two-piece ostomy appliance to catch any leakage from your existing K-pouch? If so, that might be no worse than an end-ileostomy and could potentially avoid another surgery, or at least delay it considerably. If the problem comes and goes, as yours is seeming to, you could choose to forego the appliance completely until things flare up again. The bag would have to be removed from the flange for normal K-pouch emptying. There may well be reasons this isn’t feasible, and I’m no ostomy expert, but anything that might save you another surgery is worth thinking through.

I am also not an ostomy expert and have not experienced valve problems.  Since your valve is currently not leaking, I would be inclined to delay surgery.  When it starts leaking again, you could try leaving a catheter hooked up to a leg bag 24/7.  That should result in less external skin irritation than conventional ileostomy appliances.  I do not know if there are any surgeons who could repair your valve without using more small intestine. A dietitian might be able to suggest foods that would enable you to gain some weight without making your leakage problem worse.

Hi Sweetie, 

Yes, long time no hear but I think about you often...Especially recently when I reposted a post about k pouch leakage and anti-depressors (serotonin uptake types like Prozac)...the poster is a scientist and does medical research so she used her own case as a case study and found that the usage of the meds were directly causing there may be something going on there in your case as well.

Please consider testing out her may be a possible answer...I have found a few other people who have suffered from leaks as well and when they went off of Prozac the leaks stopped...who knows? 

Also, if you are not leaking now, then something must be working right...could the pressure that the flange put on the area around your stoma have pushed something back into place? 

Do not run straight into a brick wall, but walk slowly...the wall will be there eventually one way or another...

And I agree with Scott...try sleeping with a flange hook up at night if it comes back...there is no real reason to remove the pouch if you can do the same thing with the flange and keep your guts...


Add Reply

Likes (0)
Copyright © 2015 The J-Pouch Group. All rights reserved.