No advice, just compassion...it can be a long hard road to healing...you need strength and courage and a huge dose of optimism to get through it...And a lot of support, friends and love...I cannot help with the rest but I send loving support.

Sharon

Thank you sharon! 

Yep... It is a long hard road.  Mine would never work.  

I gave up.  Too much pain and frustration.  Not worth it looking back now.  I only have so much time on this earth and didn't... Or wasn't... Going to spend any more time on it. 

And it's not bad on the ileo side.  I am happy.  I can eat what I want... And nobody even knows I have one... Other than relatives and people I work with.  Going out in public.  Nobody would even know. 

I was miserable at the year and a half also... By two years I was done with it.  It was a curse looking back.  Now that it's gone I eat whatever I want.  No wishing I wouldn't have ate that.  No burn... I also had a constant urge to go.  I do mean constant.  Driving me crazy. 

Now... I have a very forgiving stoma!  I didn't think I would ever get used to it.  After three months of this... It's a breeze compared to the pouch. 

I wish you the best and can get it figured out.  

Richard. 

Unfortunately Richard, the three months I had the colostomy was terrible for me as well. My skin around the sot as never got better and constantly burned and was raw. I hated every minute of it.  But I do agree I can't live like this forever...

What I have heard and have experienced so far between the short times I have had them is that the temp ileo is different than the permanent.  The permanent is easier as it is not in the middle of your small intestine.... Loop ileo.  It causes more problems than the end ileo.  I have had zero problems... Knock on wood.... With the end...permanent ileo.  I knew it was final and I had to make it work.  But it worked itself out.  I have adjusted and have become very comfortable with it.  And me just saying that.... I can't believe.  I was dreading wearing a bag ... The rest of my life.  To me... Now.... It's no big deal. 

I don't have any pain.. Urges... Burning.. Nothin.  I change it twice a week... Only because I want too.  I could go longer.  I think... I am one of the lucky ones to finally find a solution and not have any problems with it.   I'm not in love with it.... But I'm not afraid of it either. 

Richard. 

check out the k pouch korner.  my j pouch didn't work properly for 15 years and i finally converted to a k.  love it and wish i had dealt with it sooner.  the pelvic floor PT is miserable stuff to go through.  good of you to recognize that the j isn't working.  i waited way too long.

My surgeon wouldn't even consider the k pouch. 

And I don't think I wanted to stick a tube in me all the time even if it worked.  I am in a good place as I have said before.  I thought it would be terrible but it's ok.  Not as bad as people think.  Just like the pouch.. Any of them... It just a different way of doing it.  

Wow... 15 years.  I wouldn't have made it to three.  The pouch was as bad or worse than having the initial disease in my case.  I am happy to be rid of it.  But that is just me.  I tried to make it work.  It just wouldn't. 

Richard. 

Thanks for your replies. Dr visit today! Im sure just to discuss the test, which I was there for and saw... Discuss revision. At this point I'm. Ot even nice and have no patience si point blank asked if THIS is gonna work.  Have had it done before. When it didn't work he blew me off to Ob/gyn and therapy. Now that hasn't worked and all he can ask about is my fiber I take. Oh but now the test was pretty bad and now you believe it's time for surgery... C'mon already!!

Good luck! 

Ugh, been where you are and am hopeful for you -- but it sounds like you have exhausted this doc as a resource. I've done some of the same routine you mention, had difficulty evacuating followed by prolapse diagnosis (in addition to pouchitis and cuffitis) followed by many meds and physical therapy. Only I've done it for five years now. I swore I'd do anything to stay out of the hospital and home with my husband and kids, but at this point I am so bad off I guess I'm not really "home."

I went down to Cleveland for to get the experts opinion -- which was not to revise, given my set of issues and the likelihood of further surgery. Instead they recommended a permanent ileostomy or k pouch. I am scheduled for the conversion to k pouch and am really thinking things through the next month. Thanks for all your info Richard & Janet -- I've been reading it and appreciate it! Deanna, I hope you can get a second opinion because the doc you are describing sounds like he is at the outer limits of his experience. My best wishes for you to find a fix and not just another revision...let us know how it goes!

Jen,

To even get therapy covered for that long?!?! I think they felt they were at a loss and end of the line. I have exercises to do at home but insurance won't continue to pay without showing progress...already pay out of.pocket for a chiropractor visit...

So your problem too was only evacuation?!  Which sucks. Makes.you want.to eat " easy" things as youre already in the bathroom allll day long anyway...