workfornow reblogged your link “I'm alive because of it': Ostomy advocate fights to dispel stigmas around the procedure | CBC Radio”
@workfornow - I hope it’s okay for me to share these tags from your reblog of my ostomy post (and if not, let me know and I’ll take it down) - but I know so well how she feels. I understand it in my bones even though it is so irrational. And I think there are many, many people with ostomies who feel the same way.
It’s not at all unusual in a FB group that I belong to for women with IBD and/or ostomies to post questions that either ask “do you regret getting your ostomy” or “my doctors think they may be able to take down (i.e. reverse) my ostomy because my health has improved, but I’ve felt so much better over the last [xyz] months/years since I had my surgery, should I try getting it reversed? I’m scared that I’ll just get sick again....”
And, inevitably, the answer to the first question is almost always lots and lots of versions of NO. Even thought ostomies can come with a whole host of issues of their own, many of which I’ve had to go through myself, the vast majority of the “Crohnnies” I know (i.e. people with Crohn’s Disease - though people also get ostomies for ulcerative colitis and colon cancer, amongst other reasons) were just so sick before they had their ostomy surgery - and for many of us, had been so sick for years before surgery - that you can’t imagine going back to living like you did before. It can be unbelievable for some people how much an ostomy improves their quality of life; hell, for many UC patients, an ostomy is an ACTUAL CURE. Sometimes when I am particularly frustrated with my ostomy, I try to remember just how sick and miserable I was before to help get through it, though the longer it is, the harder it becomes to even remember what “before” George was really like. That’s how much my ostomy changed my mind.
And yet, despite all that, the answers to the second question are almost overwhelmingly YES. Because even for those of us who have ostomies - who know how much better our life became after surgery (and hell, for patients with UC like your kids’ stepmom, who may literally have been cured), we still tell people we would at least try to reverse our ostomies and go back to being “normal”. And honestly, it doesn’t make sense, it’s not like having an ostomy is so inconvenient that the benefits to our health are outweighed by the annoyance of having an ostomy. An ostomy really isn’t that hard to maintain (as long as nothing is going wrong medically) and sometimes it can even be convenient; road trips become a hell of a lot easier when you don’t have to always worry about where the next rest stop is.
Ostomies don’t keep you from enjoying a full life; you can travel with them, swim with them, do almost any physical activity; any limitations that an ostomate may have on diet or activity is as likely to come from the condition that required the ostomy, rather than the ostomy itself. Even someone like me, who has had almost every ostomy complication in the book - painful and severe skin problems around the ostomy, stomas that had problems serious enough to require surgical fixes, the chronic obstructions I mentioned in the first post, and of course, the perforation that almost killed me and was, basically, caused when I had a serious obstruction after a surgery to fix an issue with George that caused enough swelling to block up my GI-tract (it didn’t help that years of active disease has made my intestines something akin to heavily scarred over swiss cheese which was a big part of the reason that we ended up needing to take out my entire colon and make my ostomy permanent so that reversal was never really an option for me).
And yet, knowing all of that, many if not most ostomates say that they would at least try having their ostomy reversed. And when you get right down to it, there’s no way to explain that other than the fact that we all subconciously have internalized what society tells us about ostomies....when society thinks of us at all. Ostomies are gross. Ostomies are unsanitary and smell. Ostomies are ugly and need to be hidden at all costs. Ostomies are the last ditch, worst-case-scenario surgery. I’ve heard SO MANY people with Crohn’s and Colitis (or worse, the parents or caretakers of patients) who talk about their worries about having to get an ostomy as though it is AS BAD or even WORSE than death. Even I, before I had my surgery, used to think about ostomies that way. They were the Big Bad Scary Thing that I worried about when I worried about where my disease could go; IBD is a chronic illness, it's not supposed to kill you, but it can. And yet, IBD patients, especially when newly diagnosed, will almost always list “having to get an ostomy” as their biggest fear for the long term. I’ve heard people who should know better say they’d rather die than have one. Even doctors or patient information for the newly diagnosed can sometimes talk about ostomies as something that only happens if every other treatment option has failed; the last step before they just give up because there’s nothing else to be done.
I was diagnosed at 13 but didn’t get really sick for ten years after that and during those ten years when I thought about ostomies/needing surgery (if I thought about them at all, which was very rare), I thought of them as losing. Teenage me thought getting an ostomy would NEVER happen to me because that would mean “letting the disease win” and at sixteen, I thought that with enough willpower, I would always beat Crohn’s. It took about 2 years of living with a severe flare that started about a year after college to finally realize how wrong I had been - those two years included a six-week backpacking trip throuh Europe with a friend, moving to Boston from DC, starting law school, and beginning my first long-term serious relationship (with the man who is now my husband). And yet when my doctors told me that they wanted to do a temporary ileostomy in 2008 to try to help things heal and to give my body a break, I still wasn’t happy about it. I would constantly remind my doctors, my boyfriend, my family, and everyone that “this ileostomy is TEMPORARY” because even after I had my temporary ileostomy and felt better than I had in years, I still thought that having it made permanent would be the end of my life and was willing to do just about anything to avoid that happening.
Okay - this reply has gotten way longer than I meant it to, but here is the TL;DR version: society treats ostomies like they don’t exist - most people don’t have a clue what an ostomy really is. And when society DOES acknowledge ostomies exist, it almost always treats them as either a butt of a joke or as disgusting. So it’s not at all surprising that patients internalize that stigma, even if only subconciously, and many of us would still go back if we could, even knowing how much better our lives are without our colons fucking things up for us all the time. And THAT, to me, is SUCH a shame. We need to change how ostomies are perceived, not just in society at large but in the IBD community as well, because when we treat them as worst-case scenarios second only to death as a potential side effect of Crohn’s and Colitis, we make patients (a significant percentage of whom are likely to need an ostomy at some point in their lives) think something that we should be trying to normalize is not just abnormal, but terrible as well. Destigmatizing ostomies won’t just help people like me who already have them, it could save people years of suffering or even death by not making them struggle through years and years of unnecessary misery before being willing to even consider an ostomy.
