Jaynee--I'm glad you answered (and everyone else, too). It helps. No offense taken at all--you're being honest and I asked people to be honest. And I think it might help some of the people to whom ostomy is being offered as a treatment to see some of this discussed 'out in the open.'
Honestly, there are times when reading threads here or on other cancer support boards, the obviously negative attitude towards having to get an ostomy as part of treatment makes me feel...I am not even sure there's just one word for it. Often the sentiments expressed re: having to have an ostomy make me almost ashamed to admit that I have one...and make me wonder if people would react in horror if they met me in person and discovered that yep, I have an ostomy. In an environment like a support forum, which claims it's all about acceptance and honesty for CRC survivors, and where an ostomy is many, many times part of the treatment either temporarily or permanently, a horrified attitude towards ostomies and frequent negative descriptions of them really does seem out of place. Even something as low-key as 'too bad you had to get an ostomy' is the kind of comment that can make someone who has one feel...lesser than. And believe me, I''m one tough chick. It takes a lot to make me feel 'less than' anything. But there it is. Not the best place for my own self-image, I'll admit.
Jaynee--did the docs you consulted before you found your final surgeon suggest that you talk to their wound-ostomy nurses, and ensure that you had that conversation? My own CRC surgeon does have a pretty good grasp of the issues of ostomies, and he's very compassionate...but he's the first to acknowlege that his wound-ostomy nurses (there are a whole team of them) are amazing and are a vital source of information in the decision process. It's his way of physician-extending...and I think it's a reasonable and intelligent use of his nursing staff, who truly are the ostomy care/use/maintenance experts. Our first appointment, when he recommended the colostomy, I spent a little more than a half-hour with him. I spent almost two hours with the nurses, who answered every question I had and about a dozen I never even thought of. They even had a model ostomy they used to explain things, and they let me take it with me to help explain things to my family (oddly enough, the one most concerned was my father, who was completely confused by the whole thing.) They also saw me for followups for the first six months (I was going back to MSKCC for treatment once every four weeks.) The only thing I really didn't get enough info about was how/when/how much to exercise...and some of that was my own fault, for not really thinking I needed much help in that area. Two hernias later...well, there was room for improvement in communication all around.
In April, when Dr. W recommended a second ostomy, he was the first to say out loud that a double ostomy was NOT going to be a walk in the park. And again, I spent almost two hours with his nurses. AFTER seeing the WOC nursing team, and being measured/marked for the second ostomy, I took all the information they gave me, digested it, and declined the urostomy. I chose to bet on the urologic oncolgist's surgical skill...which so far seems to have been a good bet. But the nurses and the consultation with them was an integral part of my decision making both times.
The MSKCC wound/ostomy nurses who work with Dr. W aren't unique in their approach--since then, I've discovered a great group here in CNY--and before I found them, my sister-in-law (a WOC nurse/coordinator in Albany) was my main non-MSKCC resource. BTW, she wasn't my sister in law when I got my ostomy.
For me, as for many others, it is the total and absolute fear of the unknown. Let's face it, before any of you had an ostomy you really had no idea what it was like, would be like or anything about it. I got so sick and tired of some surgeons/doctors telling me that I could get used to it and then dismissing the whole idea. How do they know what I could or couldn't get used to? It bothered me then and still bothers me that some (not all) doctors still are just so cavalier about the whole process. Can anyone of you tell me that it wasn't an adjustment? Is there really anyway that anybody can be prepared for having one, to know exactly what to expect? I believe its natural when we are afraid to think about the worst case scenario, to imagine all sorts of horrible things, events, etc. rather than try to look at things calmly and rationally. Its the fear of the unknown and what we perceive an ostomy to be. Our perceptions may not be reality but its what we believe reality is because no one has told us anything differently.
I get the fear of the unknown, I truly do. And I would *never* say that my ostomy wasn't an adjustment; it was. But I guess I wonder how the fear of an ostomy could trump the fear all of us felt when we got our dx? Or does maybe the ostomy become the scapegoat and designated acceptor of all the fears associated with the diagnosis? Reading through that statement, I could substitute "cancer" for "ostomy" and, wouldn't most of us agree, the statement would still hold true? So does maybe the ostomy become the symbol of all of the things we fear and can't control about our dx?
I do think control is a big part of it--the need for control of the facilities available to me that I didn't appreciate before having an ostomy is something I was acutely aware of afterwards. I will admit that need for control has gotten a lot less over time. But when you travel, when you show dogs (and horses, for that matter), using strange restrooms which may not meet your (or anyone's!) cleanliness standards becomes something you just deal with. So over time, total control over the facilities available to me is becoming less of an issue.
As for bowel control--actually, when I'm not on chemo or radiation
, bowel control is (for me) not a huge issue. My body normalized off-treatment, and I more or less knew when I'd have output and when I'd be output-free, even though since I had hernias at the time, I couldn't irrigate to control output. So an ostomy isn't atomatically a total 'loss of control.' And having been in diapers (as an adult), I can promise everyone that having an ostomy is nothing like being in diapers.
The thing that shocks me most about my ostomy, even today?
That I work with over 150 people on a daily basis, and maybe only a handful of them actually know that I have an ostomy.
That's not because they don't all know most of the details of my treatment, surgeries, disease, etc., and it's not because I tried to hide it.
It's because they're just not aware of it.
One of the guys who manages the clin path had to have an emergency ileo last year, due to colitis. The CP boys are a pretty rough group, and there were some sincerely rough ostomy jokes going around. I made my usual training comment that 'CP could be a really tough room,' but the boys didn't think anything about it. The guy affected was wondering what to expect from his reconnection and I told him I could give him some information and websites. This guy has known me through my whole dx, known everything about what's gone on, even run my bloodwork a couple times when I wanted a local check--he had NO idea I'd had a permanent colostomy for the last three years.
I know that people are afraid that others will look at them differently--I was at first, too. But I've discovered that I'm far more conscious of my ostomy than those around me. Hard as it is for people to believe, and sometimes even for me to believe, nobody even knows I have one unless I tell them.