Living with a bag....

I think when people say things like that it's out of pure fear of the unknown. To be totally honest, I remember feeling so scared and horrified when I was waiting for my surgery date knowing I would have an ileostomy for a little while. But then when the time came and I had it, it wasn't the horror that I thought it was going to be. And I even had a tough time getting mine to behave itself. But if my j pouch fails me tomorrow I know now that I would be fine with a permanent ileo. I would just have to make sure I had a well constructed stoma (unlike my last one)!!

So in short, I totally hear you. But people are just freaked out about the unknown and the foreignness of it all. I would like to think they don't mean to hurt anyone with those comments but I can see how it could be hurtful to someone.

Well to be honest I had the loop ileo and it was my worst nightmare......my skin is/was just not equipped to handle it. There is someone in my CCFA support group with a permanent end ileo, and right now she is going through the same issues that I had as far as skin issues. It's not the most ideal option, but if it works well for you Cataja, and considering the history you posted about before getting it, then maybe you are fortunate. But I am not sure that everyone should be compelled to believe that they can or will have the same result. And note that I am just commenting on the functionality of it.....and trying to keep things in perspective.

I agree. Also keep in mind that a lot of the people who post here are those who have been through hell because of their j-pouches and still refuse to switch to an ostomy, maybe because they're the ones who feel the most negatively about ostomies.

When I had my ileo created, the first WOCN who visited me told me to never call it a bag, to only call it a pouch, because "bag" is what people say when they're talking about it derogatively.

But among the general population... I think people just don't understand or don't know anyone who has one. I don't mean to be "TMI" but I try to be very open about having an ileostomy with my friends and family because I wish it weren't such a taboo. I'm going back to work soon and considering telling my coworkers as well -- I'm not ashamed, and again, I think things would be easier for ostomates everywhere if people knew more about ostomies and had interactions with ostomates who are comfortable talking about it. I haven't decided yet though because I don't want to make anyone feel like I'm forcing them to hear about something they can't handle.

Cataja,
I had a colostomy at age 2, closed at 3 and then I grew up 90% incontinent, pretty rough for a little kid, worse as a teen...permanent nightmare...and my mother would say when my surgeons would suggest a 'bag' that she would rather see me dead than to have a bag. (she was a nurse)...I may have been able to handle it, I really don't know...But I do know that she couldn't so it was never an option for me...I went through a dzn other surgeries to prevent me from having to face one...then, behind her back I went to see Dr C, agreed to a k pouch (with possibility of a bag if it didn't work)...she never forgave me...I was no longer 'normal'...for her, as long as it was 'hidden' then I wasn't sick...
Some people, even the most enlightened ones, have a viseral prejudice against bags...maybe it is sterotypes from the distant past, maybe it is ignorance...or just plain stupidity...I don't know...But I do know that for now, at least for me...I still cannot face the option...Mommy-scar-tissue I guess...
Most of us react to the prejudices of others on the subject...left to our own I am not so sure that all of us would have the same negative feelings...
Sharon

Cataja,

I actually find you to be in incredible inspiration on this board for others of us who may someday face an ostomy. I admit, I have shuddered at the thought of a permanent one (although that was before struggling for two years with a jpouch). I also believe it was because the loop ileo also caused me so many issues.

My dad has lived with an ostomy for 27 years with no issues at all and we are all very comfortable around him, as our his friends and forget he even has one. No biggie....

I wish there were better education regarding ostomies. I also feel that until people have ever walked in our shoes and experienced the pain and discomfort many of us have, only then would they ever understand that an ostomy can be a life changing event that some of us may even welcome in order to live a pain free life.

I have a little P.S. here...When the 'biggest French Viseral surgeon' did my k pouch revision in 2000 and moved the stoma up to my bellybutton (yup!) and litterally caused a functional stoma disaster...I asked the nurse what/why...(he did the same thing to a lot of patients with permanent ileos too)...she said that 'for a surgeon, from the moment that he has to create an ostomy, it is admitting failure...failure to heal or cure the patient and therefore he tries to get it out of the way as quickly as possible and doesn't care where he puts it...for him it is all the same...and he hates ostomies'.
With medical professionals holding that sort of opinion/attitude how do you want most patients to feel?
It is tragic and a shame but it is..
Sharon

I was crushed when I awoke from 1st step J-pouch surgery to find out the pouch would not be possible and I would have a bag the rest of my life. Last thing I ever wanted to end up with.

4 years later. I'm doing just fine and have been for most of that time.

I think if I had a jpouch I would probably always have the fear about ending up with a bag.

I guess its more about how people express their fear. I too read posts about people would rather die that be stuck with a bag, that's sad to hear, but I think after they adjusted to life with a bag like I did, they would feel differently.

For most people "the bag" is just an imaginary projection. Until one lives with an ileostomy such statements such as "I'd rather die" are just so much bluster. For those who have had poorly functioning loop ileos they at least have some credibility, a poorly functioning ileostomy is a nightmare I had one for a while after disconnect but before excision at which time they did a stoma revision, even so I functioned better than with my J pouch. When I read what people go through to keep their J pouch or K pouch I just say to myself, that is/was not for me. There was a limit to what it was worth to me to keep my normal looking but not acting "function." But this is individual choice, I don't live in their skin and they don't live in mine. I ditched the J pouch after I saw my life contracting, it was that simple. I wish the J had worked for me, it didn't. I needed to move forward in life and two months after excision that is exactly what is happening. Would I rather not have the bag, of course. Hell I would rather have my colon UC and all back (lost to cancer) but we live with cards we are dealt and try to make the best hand we can.

I absolutely agree with you Cataja! I don't have an ostomy (now) but it bugs the crap out of me when people diss them. Those who had a bad experience with a temporary ileostomy really don't know what it's like to live with a permanent ileostomy. I had an end and a loop ileo. The difference was night and day for me. But regardless, there are advances being made all the time and what might have caused problems a few years ago for ileostomates, may now be a thing of the past for most. Because most people opt to have a j-pouch and the ileostomy is really very temporary, there usually isn't time to figure out the best system that offers the best solutions.

I think it's a real disservice to people who may have an ileostomy coming up in their future. And I think it's rather a slap in the face to those who have permanent ileostomies. When someone says "I'd rather die than have an ostomy" - I just think that person is a total idiot.

I'm sorry that you have to deal with the thoughtless comments.

kathy

I totally agree. I’ve had IBD for over 30 years and wasn’t smart enough to get the end ileostomy until 1/2011. Since then I have hardly posted here because I have moved on. I’m healthier than I have been in 20 years! And at age 74 getting younger. I should have done it 10 years ago.
Dave

I agree, comments like that are annoying. On the other hand, I like to give people the benefit of the doubt and assume that there is no intent to offend anyone. People tend to say things like that about anything they fear. I've heard people say they'd rather die than have a limb amputated, or be blind, use a wheel chair...even have a surgical scar! I've had people tell me, "How can you give yourself shots? I'd rather die!" So, I figure it is more of just an expression.

But, faced with a real life or death choice, you all know that life trumps death, and people are impressed by their own ability to deal with whatever is thrown at them.

We all get sensitive when something that is a part of us is described as a fate worse than death.

Jan

It's perspective. I see a lot of folks with UC say they would rather die than have jpouch surgery.

Sue

Catja- Sometimes it stems from low self-esteem. I am terrified that I will end up with a bag, but it is not because their is something wrong with it.. The 3 months between my surgeries was one of the most freeing times of my life, but I am scared to death that one day my pouch will fail and I will have to have it removed. My issues stem from self-esteem issues even though I know that my friends and family would never look at me any differently! Please don't take offense to some of the comments, because it's not always someone viewing the bag as a negative, but they are terrified inside of being rejected and hurt..

This conversation reminds of the multitude of conversations that I have had with pregnant friends and family who tell me that they would never, ever 'keep' a sick or handicapped child (refernce to me and my problems?)...then when the amniocentisis results come in and they find out that that there is a 'problem' they do not choose to 'remove' the baby...They are the same mothers who tell you that they would never 'trade' their child for a 'normal' child for anything in the world. No one knows what they will do until they are faced with a decision. Some of us react better than others...some don't...and some bluster all sorts of stuff to defend themselves against the fear.
The best thing, IMO is to never judge...would we all prefer to have perfectly healthy colons/bodies? No contest. Would we prefer to have never gotten sick? Oh, yes...but we don't often have a choice and have to learn to live with the end results...some of us live better than others with it, no matter what it is but the fact remains that none of us, in the end, have a healthy colon and the rest is just intelectualisation of 'the best of the worst' case senario.
(very long winded response)...
Love each other children, because we are the only ones who will love and understand you completely.
Sharon

Most likley, when it is written, the person doesn't have any idea of what it sounds like to the person's that have one. I'm sure it isn't done on purpose.

I have to agree it does disturb me... to a degree... but I can understand it. People will always fear the unknown. For a lot of people they only know the myths, ie ostomies smell, no more sex, the bags are huge (some people visualise a hot water bottle type thing), etc.

We need to educate people and let them know that an permanent ostomy isn't even a little bit as bad as they're imagining. Imagination is what causes their greatest fears.

We need to let them know the truths about ostomies - we don't smell, we can have sex (and great sex too), we can venture further than our front door and no one, I mean NO ONE, need know about it unless we tell them about it.

I wrote a similar post years ago, whne my perm ileo was new. I got a PM from a member - whom I love - telling me the other side. Gave me a whole new perspective. Out of respect for her privacy, I won't give details, but lets just say in her case, I could understand how she would see an ostomy as a close to death option.

In the end, I've just opted to screen out the extreme language, either way. Emotions run high and people in general don't mean to be offensive. If I feel I need to respond, a gentle, subtle and kind comment that illustrates why people make an ostomy a choice often brings a response of "I didn't realize how it sounded"

My uncle, With UC, once told my mom that he would rather die than have a bag. He did! R.I.P.
Dave

Cataja - I can understand how you feel, as I've heard it too. But like Jill, I just tune it out.

What bothers me more.. is to see so many individuals truly suffer and limit their "living" with jpouches that are not working for them but refuse to even investigate the pouch removal and permanant ileostomy choice. It is sad that people would choose endless suffering over a permanant ileostomy which could end the suffering and give them their life back.

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

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.

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

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

quote:

polyps in pouch

) having had a really rough 18 months or so.

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!"