liz,
Cataja herself suffered for a long time with J Pouch problems before going to a permanent ileostomy. She posted for a period of years about significant J Pouch problems and quality of life issues before going to the ileostomy. Not sure if you were aware of this history. I think everyone likes to hope for the best and that the problems will eventually resolve. This is regardless of whether it is a J Pouch issue, ulcerative colitis or whatever.
Liz - I agree with you. One of my heroes is a long time member here. Preston had problems with his j-pouch and decided to go with a permanent ileo very quickly. People are told that it can take a year or more for the pouch to settle down but Preston didn't buy it. I think he was around the 6-7 month mark when he threw in the towel.
I may be mistaken, but I seem to recall that Cataja's pouch wasn't always misbehaving and once she got the diagnosis of Crohn's it didn't take long to go to permanent ileo.
And sometimes it's not the patient who's putting off the surgery. Many times it's the doctor who is trying to dissuade a patient from getting a permanent ostomy.
Some of the very best and most helpful people here have permanent ileos.
kathy
I may be mistaken, but I seem to recall that Cataja's pouch wasn't always misbehaving and once she got the diagnosis of Crohn's it didn't take long to go to permanent ileo.
And sometimes it's not the patient who's putting off the surgery. Many times it's the doctor who is trying to dissuade a patient from getting a permanent ostomy.
Some of the very best and most helpful people here have permanent ileos.
kathy
quote:Many times it's the doctor who is trying to dissuade a patient from getting a permanent ostomy.
Excellent point. For a surgeon to admit failure and remove a pouch is a tough on their egotism which is usually in ample supply within that particular profession. On top of that J pouch excision is a tricky surgery that is really not performed that often. I dont think that many surgeons are comfortable performing excisions.
Well Cataja clearly chose a perm. ileostomy for better quality of life at some point and ended her suffering with a failed/misbehaving/unsuccesful/whatever you want to call it.. jpouch.
I surely am not against people searching for medical or even surgical solutions to get their jpouches functioning. In fact, one of the reasons I stick around here is to advocate for people seeking help sooner than later, and in particular in seeking second opinions or changing doctors to find more knowledgeable care.
I am thankful that I am an impatient person and didn't tolerate everyone, including my doctors, statement to keep just waiting it out.. it will get better. I sought second opinions and better doctors at approx. the 5month mark. I chose to follow their advice and get that jpouch diverted and an ileostomy at the 7month mark. I made that permanant about 18months later. Quality of life for me was far more important than continual suffering with a failed jpouch.
My point was simply that it is sad when "hoping for the best" means suffering with something that is clearly not working instead of finding a good solution with a permanant ileostomy to regain a more acceptable quality of life.
I surely am not against people searching for medical or even surgical solutions to get their jpouches functioning. In fact, one of the reasons I stick around here is to advocate for people seeking help sooner than later, and in particular in seeking second opinions or changing doctors to find more knowledgeable care.
I am thankful that I am an impatient person and didn't tolerate everyone, including my doctors, statement to keep just waiting it out.. it will get better. I sought second opinions and better doctors at approx. the 5month mark. I chose to follow their advice and get that jpouch diverted and an ileostomy at the 7month mark. I made that permanant about 18months later. Quality of life for me was far more important than continual suffering with a failed jpouch.
My point was simply that it is sad when "hoping for the best" means suffering with something that is clearly not working instead of finding a good solution with a permanant ileostomy to regain a more acceptable quality of life.
My guess is anyone saying those things have never been in our shoes.
I have a temp illo and have had it for a long time now (that's another story) but do I like it? hell no.
Has it given me much of my old life back? hell yes.
Do my friends treat me any differently? not one bit.
Any issues I have are within myself. I do consider myself a strong minded person and I know that has helped me overcome some of the feelings that arise.
I remember when I was maybe gonna need the ostomy my buddy who has now passed on at a young age and had Crohns /Ostomy, very sad but I remember him saying "Don't let it be the worst thing"
That was when the though of it would bring me to tears.
My one big thing is, I'm a single guy 42 yrs young and well lets just say I don't try real hard at finding dates. I just wouldn't know what the heck to do when the time comes.
Alan
I have a temp illo and have had it for a long time now (that's another story) but do I like it? hell no.
Has it given me much of my old life back? hell yes.
Do my friends treat me any differently? not one bit.
Any issues I have are within myself. I do consider myself a strong minded person and I know that has helped me overcome some of the feelings that arise.
I remember when I was maybe gonna need the ostomy my buddy who has now passed on at a young age and had Crohns /Ostomy, very sad but I remember him saying "Don't let it be the worst thing"
That was when the though of it would bring me to tears.
My one big thing is, I'm a single guy 42 yrs young and well lets just say I don't try real hard at finding dates. I just wouldn't know what the heck to do when the time comes.
Alan
Clever1 - you look handsome from your photo...I am sure you will have no problem landing a date. Confidence and charm will win a girl 
I am just back from hospital (see other post
I can say without hesitation that had the surgeon not found and removed the polyps that appear to have been the cause of my misery I would have immediately been discussing a permamnent end ileo. Something had to change to give me a life back and no I would not rather have died.
So Cataja I hear you and agree that sensitivity is a necessity here. We must all also understand everyone is different and have gone through many different life events to get us to where we are with the opinions we now have.
) having had a really rough 18 months or so.quote:polyps in pouch
I can say without hesitation that had the surgeon not found and removed the polyps that appear to have been the cause of my misery I would have immediately been discussing a permamnent end ileo. Something had to change to give me a life back and no I would not rather have died.
So Cataja I hear you and agree that sensitivity is a necessity here. We must all also understand everyone is different and have gone through many different life events to get us to where we are with the opinions we now have.
I've composed several posts on this thread and then discarded them, thinking I hadn't captured the issue quite correctly. It seems like each of us is fighting for something that feels as close to "normal" as we can achieve. The idea of what is closer to (or further from) normal is really very personal - for some it might have more to do with pain, for others appearance might dominate (these are just examples). The fact that this is often a fight may lead to the jarring language, but as others have posted, it's really about a personal struggle, not about others. When I'm up against it, I tend to use stronger language to describe the thing I'm fighting, but it has nothing to do with anyone else's choices.
To get my J-pouch I had to treat an ostomy as a last resort. I had qualified surgeons in multiple cities refuse to create the pouch, for both technical and prognostic reasons. I considered carefully and found a surgeon 1,000 miles from home who agreed to do the procedure (FWIW, it's usually very good advice when a surgeon advises you not to have surgery). I chose a single-stage procedure and thus never experienced an ostomy. That was ten years ago, and for me turned out to be an excellent choice. Not having an ostomy has enabled me to do some things (martial arts, scuba diving) that would have been rather more complicated otherwise.
To do all this I had to make an ostomy the thing I was fighting against. I'm pretty rational, so I prepared for the possibility anyway, and I knew my J-pouch might not last. I never had the thought that I'd rather die than have an ostomy, but each of us struggles differently, and uses different language when in a struggle. Perhaps this should also be a safe place to express ones personal struggle? When I read that stuff I don't take it literally, but rather I think "wow, he/she is in the thick of it!"
To get my J-pouch I had to treat an ostomy as a last resort. I had qualified surgeons in multiple cities refuse to create the pouch, for both technical and prognostic reasons. I considered carefully and found a surgeon 1,000 miles from home who agreed to do the procedure (FWIW, it's usually very good advice when a surgeon advises you not to have surgery). I chose a single-stage procedure and thus never experienced an ostomy. That was ten years ago, and for me turned out to be an excellent choice. Not having an ostomy has enabled me to do some things (martial arts, scuba diving) that would have been rather more complicated otherwise.
To do all this I had to make an ostomy the thing I was fighting against. I'm pretty rational, so I prepared for the possibility anyway, and I knew my J-pouch might not last. I never had the thought that I'd rather die than have an ostomy, but each of us struggles differently, and uses different language when in a struggle. Perhaps this should also be a safe place to express ones personal struggle? When I read that stuff I don't take it literally, but rather I think "wow, he/she is in the thick of it!"