*By roar I pretty much mean just listen to my intestinal deep grumbles…
Ok internet. I’m pissed. And I don’t just mean like…meh that angers me but I’m pissed off. In the last few months I have seen a lot of hatred among the IBD community towards each other, and specifically I mean two different cases of ostomates basically telling jpouchers to fuck off. I’m tired of holding my tongue and I’ve got some things to say about it.
I’ll make a list for you.
1. Whatever happened to just supporting each other? We’ve all fought horrific diseases and understand the journey we’ve all taken, so where does this divide come from? Its one of my missions to promote IBD awareness and a HUGE part of that is ostomy awareness. I love ostomates, why all of a sudden do I feel like the red headed step child of IBD now that I have a jpouch?
2. An ostomy is your choice, a jpouch was mine. Why have I seen ostomates putting down jpouchers for CHOOSING to have their takedown surgeries? Is this a simple lack of education or jealousy? Something else? I mean I understand many ostomates cannot have a jpouch, so your choices were different than mine. I don’t tell you what kinds of supplies you should be using because its different for everyone, just like the choice for a jpouch.
3. Jpouches fail. Frankly they fail more than I ever realized, but that still doesn’t mean that they all fail. To make blanket proclamations about “all jpouches” is completely asinine. Thats like saying all ostomates get strictures, or all ostomates will have a blockage. Sure its possible, but a guarantee? No way. I know an absurd amount of jpouchers, and they all have ran the gamut from happy/healthy, to sick, and even people with their pouches removed. I can safely say that in this amount, which again, is SO MANY, MOST are happy/healthy. Sure it may have taken some time to get there, but have you always been a happy/healthy ostomate? Doubtful. These diseases are tyrants, we all have to work to be where we are.
4. If you’ve never had a jpouch, shut your mouth about it. I had my ostomy for 15 months and that damn sure doesn’t make me an expert, but at least I’ve experienced it. Good and bad. Frankly, quit talking out of your stoma about things you’ll never experience.
5. Just because you have a blog, and people read it does not give you the right to spread completely false medical information. You are free to speak of your own experience until you’re blue in the face. But the second I start blogging about the statistics of epileptic seizures please stop reading. I don’t know a damn thing about that, and just because I have a lot of readers, it doesn’t give me the right to litter the internet and their screen with bullshit information.
6. Finally, it disgusts me that there is discrimination among people with IBD. Literally that is what it boils down to. Save your hate for the rest of the world, but our community should be based on love and support. Be angry with the people who don’t understand our lives and the way we live. Most importantly, instead of bad mouthing jpouchers, why don’t you show the world what a positive impact your ostomy has made on your life, and spend your time advocating for that instead of inflicting guilt on people who made other choices than you did.
Generally when I see completely barbaric posts on the internet, I tend to leave them alone, but this time I’m putting this moron on blast. Head on over to this tumblr blog and let this girl know how fantastically uninformed she is. Also keep your eye out for other anti-jpouchers, they aren’t that hard to uncover.
I don’t understand or agree with the divisiveness or exclusivity. I thought we were all in the same boat here?
Wow is that person way off base in their blog…I just checked it out.
I always thought we all supported each other and I think that most of us do. I guess I wasn’t aware that there was this division until I saw if for myself.
Amen sister…we are all sufferers and even though we have all made different choices because the individualness of our disease…we all SHOULD have each others’ butt , I mean back! Love ya Jackie!
btw, she sounds like a dope…
WTH??? This is is 17 SEVENTEEN what the heck does she know about crap? Give me a break!! Sh doesn’t even know life let alone Jpouches. I started with a Jpouch sadly the cuff area gave me fits and I’m back to the bag. Do I think Jpouches are not the way to go. HECK NO!!
I believe it’s all up to the induvidual really. I still have my plumbing and while it’s up in the air I am keeping the option open to going back to the pouch at some later date I haven’t given up yet. Could the bag be permanent sure but it’s not a given. I can’t believe someone who has NEVER experienced a Jpouch is giving advice that you should never have one based on a few friends that had issues. As someone pointed out while we see the negative side in asking for advice etc there are hundreds of success stories we’ll never know of because well if you’re healthy why would you be posting on a site dedicated to those needing help with having isssues DOH!! So we don’t really know the amount of success stories. These surgeons do as they are the ones preforming the operations and for the most part if they weren’t working they wouldn’t be recommending them.
Really Jackie? First, I love your blog, it makes me laugh when there’s isn’t much to giggle about if you know what i mean?
But your post was a little OTT, no? This blogger is just a girl. She’s only 17. She’s working through her teen years with an ostomy and I’m pretty impressed with how open she is about it. That’s pretty big coming from a teenage girl don’t you think?
Also, do you really feel oppressed by ostomates? I mean, you say jpouchers are discriminated against, so does that mean ostomates have any sort of power over you? To deprive you of something?
I can see being mildly annoyed but this girl probably sees a lot of failed jpouches (and it might be more common in children – my daughter is seen at the same hospital as she is and they don’t do jpouches on young kids because of the problems they have seen with them. They let them grow up as much as they can with an ostomy, without meds etc, so I don’t doubt what she says).
And yeah, she might be a little jealous (maybe not, don’t know). J pouch isn’t an option for her for whatever reason so she might be trying to convince herself that she doesn’t actually want one.
Anyway, relax and good luck on your recovery.
Sherry
Sorry it took me so long to respond to this Sherry. Ok honestly…I don’t feel oppressed. But I do feel a little blindsided. Granted I may have unintentionally directed this post mostly to this kid, because it was the most recent post that I saw, but its not the only one I’ve seen. Since I’ve brought this topic up, I have heard a lot of other stories confirming what I wrote about. I just never thought there was any kind of animosity like that. Its unfortunate that the IBD community isn’t full of anything but support. I think that is what I was trying to say through all of this.
As for the young ostomate who I may have made my sacrifical lamb for this post, I do think its great how open and proud she is. I do not think that she has the right to spout off false information and for it to be ok simply because of her age. If you read her blog more, you can see she did a survey where she openly admits she doesn’t remember having UC, doesn’t know what stricture or adhesions are and so on. She isn’t even educated about the disease she had, or the ostomy she currently has. The level of education you have about your disease is your own choice, but if you don’t eve know about what you deal with, you absolutely cannot talk about something you do not experience. I do think shes young, but I do not think that is an excuse for ignorace. She also admitted that she knows 2 people total who have had a jpouch. Seems like a small sample to me. She also stated that her doctors are “pushing” her to get a jpouch and shes adamatly denying them, which again is fine. I admire her confidence, but again, I wish she took the stand of why SHE doesn’t want a jpouch, and not why EVERYONE should pass on a jpouch.
Anyway, I do appreciate you calling me out and I value your opinions as someone who takes the time to read my blog. I am not a parent of a teenager, but I do remember being one. I think her heart is in the right place, I just think she needs some more practice on how to effectively communicate. I’ve thought about contacting her and having a real conversation with her about her misconceptions and also telling her that I think shes on the path to great things, but I’m not sure that it would do any good at this point. I’m still learning too.
Im confused as to her age because she posted on jpouch.org as inflamed and untamed and said she’s turning 30.
Awhile back on jpouch.org there was an ostomate who was able to express why he felt some animosity towards jpouchers in a reasonably intelligent manner. From his perspective, hearing what some pouchers have to deal with in their day to day lives sounded to him like one big struggle to avoid becoming an ostomate. It seemes there are some ostomates who perceive jpouchers as people who will endure anything to not have to be like them. Fact is the majority of jpouchers don’t have to endure very much, and we don’t see ourselves as being very different than ostomates. Actually, ostomates are one of the very few groups of people we can relate to. Maybe some communication is needed to get rid of these misperceptions and stop the spread of misinformation.
I couldn’t have said it better myself. In fact…I didn’t. I think this is 100% dead on. The vast misconception about the amount of pain or problems jpouchers have is crazy. As usual people don’t realize that the happy/healthy people are not on the forums complaining. I can see why a permanent ostomate might think this, but again its a choice. Sure there are some jpouchers who are terrified of ostomies again, but there are a lot of us who are thankful we had them, and appreciate that they were live savers. I think many of us do fight for our pouches, the same way we fought for our colons. But in the end, should it have to go, we all tend to make the right decisions.
To Marianne,
I am Inflammed & Untamed, my real name is Sara and I am turing 30. I am also a personal friend of Jackie’s (we work at Camp Oasis together). You can find my blog at agirlwithguts.tumblr.com
The blog that this is linked to is not mine. It’s a 17 year old who took part of my blog (UC myth #1) and added her own two cents about how j-pouches suck.
I hope that clears up the confusion. Tumblr is kind of confusing and it allows you the option to ‘reblog’ which is basically re-posting something off someone else’s blog onto your own. So in this case that girl reblogged my post onto her blog and then added how no one should ever get a jpouch.
Oh got ya…that was confusing! Sorry
lol, don’t be sorry. Just had to clear my name so as to not be confused with that blog.
Jackie,
I think it would be fantastic if you contacted her. I would be willing to be that she would be totally surprised by your post and would take a lot of what you have to say on board. Honestly, I remember sprouting some silly shit when I was 17 and I’m thankful for all of the people who bothered to call me out while I was growing up. I have to say, I still think she’s a pretty cool having confidence that she does and I hope if my daughter has surgery (more than likely at this point) she has the same. Thanks for responding and thanks for your blog.
Sherry