Long night after a long week with what was probably a good gastro...my valve is starting to pay the price of it and I probably will not be able to hold off for much longer before schedueling surgery...I usually walk myself to O.R. like a trouper without a tear or a fear and put my body in the hands of the surgeons that I trust...other than the dreaded I.V.s or Pic lines I survive the whole experience pretty much ok and don't b#tch too much...but now I am close to loosing it...this horrible fear that this is the last time, the final try and that if he cannot fix it in O.R or worse if he can but it fails afterwards then my life is going to be turned on its ear (as if it isn't already)...
I am sad.
And so sick and tired of this. I just want to break down and cry.
I could go on for hours on the pain and frustration and discomfort and my life that has been pretty much reduced to a few square blocks...the fact that I am so terribly alone that I want to die...but it is pointless and I fear that so is this surgery.
Am I running head long into a wall? why will this one be different that all of the others? Will I finally heal?
I know that we are all pretty much going through all of this hell together and that most of you have lived through this and so much more but the fear is starting to hit me.
So sorry for the rant but I am so tired and lonely and scared that it is killing me.
Sharon

Sharon,

I can certainly understand your fear....I feel for you so much lately. I know I don't post much but your posts and replies always make me smile. Please know that my prayers and thought are with you always and hang in there...we are all behind you 100%

Dear Sharon,

I read often, but rarely write. I'm so sorry that you have had such a difficult road. You usually seem to deal so well with everything life throws at you. I wish there was something more that I could do. You have a tremendous community of people on this board who care about you. I hope in some way you can feel that.

Sharon....I'm sorry you are going through all of this and wish I could just make it disappear! I'm curious, however. Are you that set against having an permanent ileostomy? If so, why? I ask because I chose to keep my temporary ileostomy for a full year and once I figured out which appliances, etc. worked best for me, I figured I could live with it forever. I had a hard time having the surgery to have my J-pouch reconnected. I just felt so great with the ileostomy!

Maybe it's because I am older....70......that I really believe that if I ever had to get rid of my J-pouch and go back to an ileostomy, I wouldn't mind. Hope you feel better soon, really, I do!

Sharon,
You are such a well respected and beloved person on this site. I'm so sorry you are going through such difficulties. I hope things turn around for you soon....thinking of you

Thank you so much girls (and guys!),
I got a bit of hubby love last night (a hug and a bit of understanding) and it helps a bit...but it doesn't change the situation and the impending facts...yes, I am against the whole outside bag thing for me...I cannot for the moment wrap my brain around it...it has little to do with anything but self image...hubby is practically pushing for it! He is so tired of my being housebound and not eating...I am just trying hard to hang on until I can get a few things settled (website, work, driver's license in this darned country!!!) all of the things that you need to be able to survive this new convalesence alone...and then maybe I will be able to go to O.R. with a bit of serinity...
For now that horrible anxiety-stress feeling is living in my gut and eating at me...I know that I am not going to get a garentee of outcome but I am terrified of going in to O.R. and coming out with an outside bag...just me and my combat...
For now I will try hard to zen out a bit and not rip my hair out.
Sharon

Sharon, consider yourself hugged.

You are NOT alone.

Thanks Jeff,
am a bit calmer but running like crazy to empty the pouch every 15 mins...pouring water out of it..litres and litres...don't know why but it is exhausting...totally dehydrated now...pushing liquids and glucose/salts
Sharon

I have similar feelings to you about going back to the bag.
I had a bag for 3 years, and have had my Wpouch since 1998.
As many problems as I have with my pouch, I still will not consider having a ostomy again.

I had to practically beg my first surgeon to save enough rectum for a future pouch after my toxic mega colon burst.

Now the pouch is part of my body and I want to keep it as long as I want to keep it.

Stinky and worse. I feel awful for you, and hope for peace and calmness... Not to mention a miracle cure.

So sorry for this.

Gin

It seems like in the long series of things not going right, my valve is finally starting to pull out (prolapse)...I have been feeling the pressure for a while and hoping like hell that it would not occur but I feel like it is starting to come apart...had problems emptying lately and it may be that the valve is blocking the opening a bit...will ask the doc to do another contrast to see where the valve is exactly...I have been hoping like hell that this was not going to happen to me this year...
yuck
Sharon

Sharon

Just wanted to let you know Im thinking of you and I understand a bit of your anxiety. I am facing a redo of pouch and have a 20-25% chance of having a perm ileo. I simply cannot bear the thought. Its crazy I have had 13 surgeries for various reasons and some of them big ones and I did not have the fear associated with this one. I was beating myself up for being so vain but Im not sure that is 100% the problem Part of it for me is I desperately just want to be "normal" and a bag would remind me every minute i wasnt. Im so sorry you are enduring such difficulty and I pray your pouch can hold off till you are able to get things in order for yourself. I am so glad to hear hubby is at least trying to "help"
Blessings

Shell, It is not vanity...it is self image and there is a big difference...I am not vain, I accept wrinkles and grey hair just fine...the spare pounds are not plesant but they belong to me...so do the numuerous scars...but an outside bag is not me...it is not a typical sign of aging or time passing...it is quite simply a sure sign of failure of my body and its healing process...it means that I lost the war...a 50 year war...of pure pain and anguish...so I completely understand anyone who suffers as I do at the thought of losing their pouch.
My greatest fear is not the pain or the suffering...just that horrible knawing feeling that I am going to wake up with a bag attched to me...
Sharon

Sharon

I hope i did not come across as saying you were vain as that was not my intent. I was trying to share my own struggle and what i thought my struggle entailed. Im am truly sorry, i must b more careful in the future on my wording. People on this site go thru enough and I definetly dont want to be another source of aggravation.

Shell,

I think your language was fine; you were clearly talking about your own feelings, as Sharon was about hers. We all struggle with these issues. No need to self-censor.

RC