Sorry you had to come to this conclusion, but I get it. Two years is a long time to wait for acceptable function. Sure, it is possible that something will be found during surgery that is a game changer, but you are smart to assume there is no magic unicorn and start getting used to the idea of pouch removal and ileostomy.

 

Every one of us needs to accept that one day the pouch may fail. Like writing your will, not a thing to look forward too. But, hopefully you can now plan for the future and move on!

 

Good luck!

 

Jan

I am on the road to accepting it.  May not sound like it above but as I move around at work right now I imagine my self wearing an appliance.  Sounds silly. 
Thank you Jan.  I do think I have made the right decision for myself and for others around me that see me deteriorate as I cannot see.
Edit...
Next day.
Been up most of the night.
Gonna miss another day of work.
I know when I have to take off work from no sleep it's time.
I don't miss work.  If I get sleep.  I suffer through it.  Might as well get paid... While it's acting up. But I operate machinery and it won't mix with no sleep.  And really this is only the second time I have missed work since I went back but I see its gonna happen more often.
Burning and cramping is so intense I cannot sleep.
Just convinces me more it needs to go.
I reread your post a couple times Jan.
Thank you for the comment.
It also puts in my mind I am doing the right thing.
This thing is a love hate relationship.
But I think I need to divorce it.
Lol.

Aye yi yi.... I received my first Hollister samples today.
Memories.  I used these the first time I had an Osteomy.
Getting ready and stocked up.  Have several things more to get.  Paste...  powder and such.  Especially my head together.. Lol.
Happy Saturday all.
Richard.

Richard,

 

Take a set of those sample supplies and place a set exactly where you would like your stoma to be.  You might want to place it below your pant line.  Try it out; you can always take it off after you've practiced.  I did this.  Then when I met with the stoma nurse, we were able to talk about location and get just the right spot that would work for the clothing I wanted to wear in the future.  Also wearing a complete appliance system before surgery gets you ready mentally and physically for the permanent ileostomy.

 

You're going to do great!

 

Caty

Good idea!
I had an appliance for almost four weeks when I had an emergency surgery and they just took it off and hooked me up. 
It was on my right side in a spot where it was at my belt line.  I didn't like the area where it rubbed and would like the stoma above the belt line and the bag in my pants.  Possible?  I don't know.  I have bad site in my left eye... This sounds like it won't work... But having it on the right side was hard to keep an eye on it while working on it so I would like it on the left where I can focus on it. 
I have seen where someone sells men's underwear that actually has a pouch in them to put you pouch in!  Great idea.  I think that would work.  The problem right now is I have so many size 32 Levi's and right now my waist is at 30 or less.  But.... I am hoping to gain to get back in the 32's once I have the Osteomy.
But the wearing it beforehand is a great idea and I am gonna do that.
It was absolutely in the wrong spot last time.
Thank you for  the idea.  I am gonna use it.

Edit.
In fact... I am gonna wear one to work with some applesauce in it and work with it.
Thank you.  I would have never thought of that.

Sounds good!  Mine is on the left side and I like it there very much.  I had three temporary ileostomies on the right side and my surgeon did not want to place it there permanently.  He wanted a smooth surface with no scars.  During your practice placement, the flange can be placed like a diamond; nothing in the rule book says it has to be placed squarely on your abdomen.  I place it like a diamond because I have a scar down my abdomen and I need a bit extra white part of the tape to pass over the scar.  Also (if you're using a two-piece system as I do) attach the bag to the flange at the diagonal rather than straight up and down.  As it fills with fluid, it won't show under your pants because it's aiming diagonally across your abdomen.

 

I hope this makes sense.

 

Caty 

Well.  There are really only two companies.
Hollister.
Coloplast.
I remember.. I think... Not a good time last time.... But I think the Hollister was the better of the two for me.  But as I look at yhe Coloplast I remember the two piece has a secure snap fit.  I will have to try both prior.
Thank you for the idea.  I have 3  months before the end of my pouch so that gives me plenty of time. 
I have to wait until after Thanksgiving.  My wife loves that holiday as all my kids... Grandkids... And a few others are here for a big meal.  But the year I had my initial surgery..... And I didn't know this... She sat here by herself in the dark and just thinking about it now makes me sad.
Soooo.  I am waiting until then to go in.

There is a third manufacturer, Convatec.  I have used and loved their moldable wafers and bags (12") for over 8 years.  Also, I have an end ileostomy not a loop ileostomy.  The end is SOOOO much easier to manage.  You might want to discuss which type your surgeon plans on doing in your case.

 

Caty

There's another company called Marlen. They make a deep convex wafer for skin around the stoma that's uneven and/or a stoma that is small or doesn't stick out very much. It's just a thought. They'll send samples, too.

It will be an end.  I had the loop and I know I couldn't live with that.  In the short time I had it I had 3 blockages.  One causing me to have to be opened up. 
No loop.  Blockages... Such an innocent word.  But boy those things are painful.

Lambiepie:

Will the Marlen brand work with a very small loop?  I've got bad skin breakdown because the stoma is so small and the skin and tissue surrounding it is swollen and sore.  Will the company send you samples?  Do they have a website?
Thanks bunches!
Nora

Richard, I don't know where you will be getting your supplies from, but we get ours from Edgepark.  They have the underwear that you can place the pouch in,  My son wears them all the time and it was covered by our insurance.  I bought him about 6 pairs.  he still wears his regular underwear underneath, no clue why, but he might just feel more comfortable.  We also use Convetec appliances.  Never tried anything else.  Thats what they gave us in the hospital.

 

Good Luck to you, it sounds like you have been through a lot.  Hopefully you will finally get some relief.

 

 

On my first round with a bag I saw the underwear with a pouch.  I am certainly going to try them.  I have good private insurance and will see if they cover the underwear.  I would hope.  They are over 30 dollars a pair!  My insurance covers everything else so no worries there.  I will have to get a middleman like what you have.  Been through that and still have a few appliances left but no paste and accessories.
Thank you for the best wishes.  I have a long way to go.
Richard.

I used ostomy secrets and got the belt thing but I know they had underwear to.  Good luck, Richard.

I understand your reasons for wanting to wait till Nov. to have the surgery. But if I were you, I would get it done ASAP. I was also very upset about the perm bag. I had even tried the stupid k-pouch, which just added another 2 years to my pain sentence. I was expecting the same long recovery for the last surgery, but I was amazed at how quickly I healed up. I went back to work 2 weeks earlier than I thought! When you are actually healthy, your body will heal, and you will be ready for Thanksgiving! 

 

I know, i know...your brain is telling you 500 reasons to wait. Just think about it, though! No more sleepless nights. No more anxiety over where the nearest bathroom is located. You could travel! Stop agonizing over the negatives and start embracing the positives. I went in to surgery in complete denial that it was happening. Looking back, I should have done it WAY sooner. Take your life back!!!

 

Rachel

Rachel.
I have two reasons waiting.
One is the last time I was very sick.  As I posted before my wife loves thanksgiving... She was alone that day.
She cooks for everyone.. I have two kids and four soon to be five grandkids.  I will wait for that.  My luck.. Just like getting the Pouch kept me in the hospital for close to 9 weeks over a 2 and a half month period.
If it can go wrong it will with me.
Second.
Most important.
I work in the weather.  I will be able to skip working in the cold.... Brrrr.... I don't have any fat and I cannot put enough on to stay warm. 
I don't mind waiting.  I can get my head adjusted with counseling... And a bunch of other stuff I have to get done that I am not gonna want to do afterwards.
I feel I need the time.
Not in any way am I talking myself out of it.
It's set.  I will be ready and prepared unlike diving into getting the Pouch.  That was a nightmare.
Richard.

Edit.
At work right now and it was suggested in another post.. Or here that I wear an appliance before surgery.
I am wearing one now.  Weird... But I put applesauce in it(my wife said it could be a snack later... Ahhhh.. Don't think so) anyways... I feel comfortable with it.  I know it really is not the real deal and all but when I had a bag for a short time I was sick and really never went in public except to go to a Dr appointment or emergency room. 
Even after having it on a short time and having it where I want it is proving to be an effective method of trying it before you buy it!  I will shower and sleep with it also.
Please... Don't think I am weird.  Well I am... But I am trying to get it in my head I can get better with this and move on.
Kudos to all who wear one.
It will be more difficult when I  actually happens and no turning back.  But I think by the time I get to that point I will be ready. 
Thanks All!

Hi Richard I had two pouches fail and wanted to die before I got a perma bag, but after 9 years with it, and alot more surgerys, I would not change it for them world,  I no longer have those issues, yes I have alot of new issues but the trade off is better now than before, I can do more than before, I do get tired really easy and keep losing more organs, and other issues, it sounds bad I know but this trade off is better than the Jpouch...   For me love my bag vs a bad Jpouch and that nasty pain, I have pain but no where near what that is, no thanks...never again, I had over 6 years of that pain with UC and Jpouch issues and two coma's because of it..

 

Get Rid of that things.. I think you will be happy... If you have your Rectum, do not let them remove it , or you may regret it... That gave me alot of issues.

 

Best of Luck!

Mine will be gone soon.
I cannot do this anymore.. Two years is long enough to find out if it will work.
I cannot understand how some here keep fighting to keep something that makes them sick.... uncomfortable... And in pain. 
I am over it...it has to go.
I know the appliance has problems.
Maybe you could post some of yours so I know what I have to look forward to and be prepared for it.
I wore one for close to a month.  I had no problems with it but didn't like it of course.  But I have to get healthy mentally and physically and this is the only way I can do it.
I also have to get on with my life.
My goodness.  In the close to two years I have had it it seems like a worse version of UC!
Richard.

Just an update as time goes.
Today is one of the convincing days. To remove it.
I must have gone 15 times so far. Have not counted... Most likely more.  Not enough to empty but seems it would with the total amount that has come out.
Every time I go the pain get increasingly worse and by the 10 -  12th time I was in a tub of hot water.  Only thing that i could do to not feel like  pin cushion.  My abdomen is so sore from just going and pushing.  The pushing is just happening with the urgency.  I can still hold it.... But what's the point when it becomes so painful.  And as I sit here typing this I know and can feel it is not done yet.
If today we a work day I would have missed work and getting the Pouch was so I could work and do other things. 
Just explaining not complaining.... I hope it seems I'm  not.... Just have to get it off my chest.
Richard.
(talking here is a form of therapy for me)

Richard, I remember starting to call my bathroom "my office" because I was in there so much. I also remembering taking a bath every day as it was sometimes the only way I could soothe my pain. Remember all of this because it will go away after your surgery! During your adjustment period after jpouch removal, when you're sore or leaking or puffy, you may from time to time ask "remind me why I did this??" It REALLY helps when you remember how awful things were and it will help you to settle into your new system. 

i too need to have my j-pouch removed.  i'm considering a k-pouch.  have you looked into it?  go to the 'k-pouch korner' on this web site for some info.  good luck, jlh

I asked my surgeon and she doesn't do them.  I would have to go out of state to even talk to one about it that does  them. 
I read some on it and as much weight loss I have had from I understand when I gain the valve may cause problems. I really do not want to do that.  All the end results be it a bag.. K pouch... bcir...they all have problems.  I personally believe keeping mine in any form is just going to be more problems.  I am more or less resigned to having an end ileo done... And be done with it.  I think it will end the problems I have now. 
I went in knowing the Pouch may not work and that I would have to have it removed. 
I know I would have regretted not trying it but I have and as I said above today was the perfect storm. 
I think while going through what I have today just to simply have it go in a bag.  Instead of the excruciating pains.
Thanks.... I will still go in there and do some more reading.
Richard.
Update.
Read some of the stuff in there
K pouch forum.
Nah... I don't think I would like to do that.
My luck if I did do this I would have problems.

richard

just writing to say that i very much respect your reasoning and decision.  i too am resigned to having the jpouch removed.  my gi doc said i will find it liberating, but i beg to differ.  resigned is the better term.  wish you the best of success and adaption to ileostomy.  they aren't fun, that's for sure.  jlh

jlh... Are you having your surgery to remove it this year?
I am scheduled November 30th.
I have a bit of time to experiment with it.  Foods and such.  Already have had scopes and opinions.  So no more Dr appointments. 
Just wondering.

richard

not yet scheduled as first i'm seeing a doc in nyc about whether a k pouch would work for me.  then i'll need to schedule either surgery around some orthos surgeries--my replaced shoulder, for one of them, has failed and the parts are moving in the joint.  pain!

 

i have some of your same symptoms, but the pouchitis accounts for many of them.  this is controlled, although less and less so to the unfortunate demise of the pouch, with meds.  additionally some of the symptoms were relieved with the lowFODMAP diet.  this is a tough diet to adapt to, but once i got on i felt better and it now works for me.  terrible stomach aches and pressure in the pouch were significantly lessened.  it even reduced blockages.  the diet doesn't cure anything it just minimizes symptoms, which for me made a difference between not functioning on some days and being ok.  i also realize that once the pouch is removed i will still need to follow the diet.  i will post links to info on it.

 

hang in there!!  jlh