I had my J pouch constructed over a year ago included an ileus and 35 days in the hospital.  To date have not had the take down as within a day of having the pouch constructed I am incontinence and  my surgeon says u are likely to be that way but why wouldn’t u try ?  and no further testing?  Wonder if there is something or someway to confirm if this is the likely outcome.

I have gone to the pelvic floor clinic as suggested and they say muscles are good except at rest and not sure I feel anything no warning when I am having the leaking  so at rest they say my anal sphincter at rest is wide open  so I’m guessing the sensory nerve was damaged maybe during the construction of the J Pouch surgery 

I never had any issues when I had the first surgery which was the end and then due to the drugs etc I had to wait a year for the pouch construction.  I didn’t know how good I had it as this loop is awful and I never had any incontinence

It a great thing to say sure let’s hook it up and then I end up  having no any control.  

Right now still have the bag with the loop and wear a pad for mucus and water. I’m very depressed - is there not tests that can see if u are going to be incontinence

surgeon doesn’t seem to wante to do any testing so I’m most likely  going to have another surgery to go back to an end and remove Jpouch as this leaking all the time is awful  

Wish I never had the second surgery for this construction  of the JPouch

If any one has any suggestions or a surgeon they would recommend please let me know  

tried Imodium and she prescribed Lomotil  need 6 a day and still drains some but get a terrible headache from it

live in Canada.

Original Post

Remember, it is your body and you are the one who signs the consent form for surgery.  If you want an end ileostomy and your j-pouch removed you must advocate for yourself.  It sounds like that solution would allow you to stop worrying about incontinence and let you get on with your life.  I hope you find the right solution for you.  

Leann, if the “incontinence” you are describing is basically just leakage of mucus, many people describe having the same experience with that slippery stuff, and have excellent results after takedown.

I too had (mostly) uncontrollable mucus leakage prior to takedown and had to wear a pad 24/7. I’d step off a curb and just that stretch would create a leak. It was maddening. Post takedown, different story.

If you were to have your J pouch removed and your bottom sewn shut, you would not be able to have another J pouch at a later date.  A manometry test would tell if your anal sphincter muscles were strong enough to support having a J pouch.  I opted to continue with a J pouch for 30 years even though I experienced 12 BM’s a day and some leakage.  You could always go to an end ileo or a continent ileostomy if the J pouch did not produce acceptable results.  The two continent options that do not require having an external bag are the K pouch and the BCIR.  There is plenty of information about these options on the internet.

It sounds like you want to try the jpouch, and it does sound like some things have been tested that suggest you won't be able to control your BMs at all unless you are focused on it which would be very strenuous.

In my opinion, as much as I dislike the external pouch, I think it sounds like a Barbie butt and keeping the bag is best. Do you have any control over the mucus now? How are you managing with your bag?

A jpouch isn't the greatest thing and comes with other possible issues like pouchitis. Good luck with your decision.

Thanks everyone. I need to get to someone who will do some testing and make an informed decision and that is proving difficult. 

Can you find the best temporary solution, while leaving all your options open for future decisions when your new system is more mature and calm?  I do not say this to be flip, but it's like banking investments, or never signing important binding documents when you are under terrible strain and pressure and emotion and all you want, right now, is any way out. If you remove your pouch and have a Barbie bum, there is no other option. You'll have an ostomy for life, and they can become very expensive, for decades, if you don't have insurance. One worry I had if I had to have a permanent ostomy was how I would manage if I found myself alone, or incapacitated, or in a nursing home. How would I look after changing the bag, who would do it for me, etc.  When I had my temporary ostomy and was waiting for takedown, I had excruciating burns on my skin underneath the wafer. My skin was burnt raw and bleeding, which made the adhesive ineffective, and it made me weep and scream whenever food exited, which was all the time because I was producing mucus with or without food. I feared that my j pouch would have the same effect on my anal skin after takedown. But it was okay after takedown, and once my j pouch matured and figured out what to do. I hope it is possible for you to leave your options on the table while you figure out what to do. 

Thanks. I would like to try but I would like to have some testing done to see if there is even a point and not getting some testing on the pouch is frustrating. 

to say they haven’t seen Someone like me before is confusing as I have the same issues I see orders have all over this group. 

I think I need to get a second opinion and that isn’t easy here in Canada 

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