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Why is surgery so polarising?

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Posted 4/15/2015 8:07 PM (GMT 0)
It's like you can only LOVE it or HATE it and no grey areas in between are tolerated. You are either praising surgery to the heavens, and absolutely loving life, or you are called woofwoof or Damien (ostomy folks will likely know who I mean).

Personally I found surgery a horrible, gruelling process, albeit one that was unfortunately necessary. I am pretty disappointed with the results, although I do accept it could have been a lot, lot worse - that doesn't, however, stop me from feeling disappointed.

All in all, my feelings about surgery can be summarised in a great, big, fat "meh". Can't believe there isn't anyone else as lacklustre as me. I must be so boring. There isn't a person under the sun who can be less enthusiastic than me about certain things: colectomy surgery is so one of them.

(I don't really care if I'm beating the same old drum either. I guess I just can't get over with how utterly indifferent, bored, etc. etc. I am to the whole surgery concept. My life hasn't been changed for the better, I'm still the same person, etc. To be honest, I felt a lot better on steroids than I do now - sadly staying on 40mg Pred for the rest of my life wasn't an option, but I would have taken it in a heartbeat if it had been. Least I had more energy and was more sociable.)

#blogWELL

Post Edited (NiceCupOfTea) : 4/15/2015 2:15:53 PM (GMT-6)

Posted 4/15/2015 8:52 PM (GMT 0)
My issue with the surgery outcome stories is that those who have had the greatest results with it will undoubtedly be the most outspoken about it. I am not a big fan of using survey data because it can be very biased. In hindsight, it's invalidating to say you aren't happy with a decision you made. This makes it less likely for people to write how they really feel about it. I don't want to hear it's all sunshine and roses all the time, because it truly is not. What I want is everyone to speak up about how they truly feel. I thank you for touching up on this issue when so many others are staying quiet.
Posted 4/15/2015 9:27 PM (GMT 0)
there does seem to be something about the colon however. people can be told that removing a spleen, gallbladder, kidney, lung, voicebox, part of stomach, several vertebrae removed/fused ... and they are like, OK - not happy, but more like "I need surgery"

the colon, even when it is j-pouch and not a bag, seems to be in a whole special class of insult, or body part people find so intensely private.
Posted 4/15/2015 9:37 PM (GMT 0)
That's the way a lot of topics are though. I find myself middle ground on many many things. People want to label you though, you are either pro or anti... It's hard for them to imagine anything else.
Posted 4/15/2015 9:53 PM (GMT 0)
It's so polarizing #1 because it's forever-no returns #2 because in my opinion as well as my GI doc's it's done too soon all the time. I am living proof of how surgery is used as a viable option when other methods may work just as well and allow you to keep your colon.
Also, many of those who have surgery feel the need to talk it up because they have crossed a threshold that they can't reverse.
Surgery is a life saver in many cases but it's also an industry, a very lucrative one. From my own personal experience, it's touted as a "cure" when it's almost as bad as the original disease. Yes it's polarizing, but we can all get along if we are truthful an honest, including the medical community...
Posted 4/15/2015 10:04 PM (GMT 0)
Did you guys see the anti-smoking commercial where the woman is saying how the worst thing she lost from smoking was her colon. She then goes into detail about the bags and emptying and how badly it sucks. I thought it was pretty terrible considering there are people out there who don't smoke and end up having colon surgery and have a bag (and a lot of them have a better outlook than her - this would be like NCOT on a commercial about having an ostomy, haha). It's really thoughtless on the part of the organization that put the commercial out. I mean, it's not glamorous, but heck, could they make having a bag look any worse?

I guess other people are bothered by it, i tried to find the ad to show but i found someone complaining about the ad.

www.dailymail.co.uk/news/article-3037961/Ostomy-bag-wearing-student-19-wages-war-new-anti-smoking-advert-warning-smokers-end-like-her.html
Posted 4/15/2015 10:16 PM (GMT 0)
I just got tired of being sick, and jumping from one medication to the next. My surgeon told me my colon was "pretty sick" at my post-op follow up, so regardless of whatever new medication was, or will be available, I'd have remained sick for the foreseeable future. I wasn't at all interested in that, so I scheduled the surgery. Managing the temp-ileostomy has been a complete pain, but I only have to deal with that for 8 more days. 2 remaining hurdles are the gastro-graph, and assuming that's all good, the take-down surgery. I'm looking forward to having a healthy, perfectly functioning j-pouch, and getting back to living.
Posted 4/15/2015 10:33 PM (GMT 0)
I was going to the bathroom 30x plus a day. It wasn't even poop half the time it was just blood and mucus. I was on a laundry list of drugs that didn't even work. I couldn't leave the house without crapping my pants. I couldn't sleep, eat or take care of my family. It was hell on earth for me.

Surgery for me was a no brainer. Was it hard? Hell yes. But it was such a small blip on the radar map of my life. Even if my surgery outcome was less than good I still couldn't have gone on the way I was going. So I had no where to go but up. No choice for me and I'm grateful every day for this procedure.

So in short I sing its praises because it's light years better from where I was.
Posted 4/15/2015 11:15 PM (GMT 0)
I knew for sure that surgery was not right for me last year. I've rarely been so sure of anything. My inoperable strictures have disappeared and I'm in mucosal remission for the first time since diagnosis.

Some day, if I have a bad biopsy, or a serious flare, I might be ready to have the surgery. Maybe either medicine or surgical technique will have improved by then too. We'll see :)
Posted 4/15/2015 11:46 PM (GMT 0)
I sometimes wonder if a person's mind set might also have a lot to do with how they feel after getting surgery...I wouldn't expect myself to be in a very good mind set if it was me either and maybe depression has a lot to do with it IDK....NCOT are you seeing a therapist to help with your depression?
Posted 4/16/2015 12:28 AM (GMT 0)
if nice is depressed (which i'm not sure she is) i think it would be about more than the less than optimal outcome of her surgery, and more about life in general -

she said disappointed - to me, that's a long way from depressed - I'm disappointed about a lot of things that did or didn't occur in my past - but it doesn't depress me - at least I don't think it does turn

and I agree with her analysis - when you've made a significant decision (if it actually was a choice) then you kind of have to put on a happy face - and that's not a bad thing -
Posted 4/16/2015 12:47 AM (GMT 0)
Cheers folks; interesting set of responses. nssg - hadn't heard about that! There is a video of the ad in the middle of the article, if anyone wants to see it. Also read the blogger's take on it. All I can say is I'm not ashamed of having an ileostomy and the anti-smoking ad didn't make me feel ashamed. I have never been a smoker, so why on earth would I take the ad personally? Saw on episode of Holby City a few years ago that was miles worse, imo. It was so bad I wrote a long post about it on the Crohn's board and even debated sending it to the producers (but I wussed out).

Tornado6 - Yeah, I remember your dilemma about surgery. Don't think I would have had it in your shoes either; glad you made a decision you're happy with.

pb4 - Not at the moment, no >_>. Can't afford to go private and it's virtually impossible to get therapy on the NHS. I saw a good woman earlier on this year, but only for about 10 sessions. (She left to go on maternity leave, but she wasn't contracted to see me for longer than 10 sessions anyway.) I was allocated a care coordinator, but didn't get on with her at all. To be fair, I am quite hard to to talk to: it's not for nothing I got an ASD diagnosis. On the other hand, it's rare to find anybody who understands autism enough to really try and accommodate you: most pay lip service, if that much.

I have been very depressed of late. Facing a massive change in my life, and I don't deal with change well - I'm moving out tomorrow. Literally. Moving into a new flat. It has taken absolutely forever to get the place half habitable. Expensive, too. It should look quite nice once it's all done though.

Think I may have gone a bit off-topic. Oh well, I guess HW is my therapy... >_>

Edit: just saw stud's post. Nah, I'm both disappointed and depressed :p I'm just trying to get some perspective on it, though, and not completely fall apart. I have to intellectualise my feelings about things a lot, which sometimes work - and sometimes doesn't...

Post Edited (NiceCupOfTea) : 4/15/2015 6:50:06 PM (GMT-6)

Posted 4/16/2015 2:27 AM (GMT 0)
I am really excited for you to be moving into your own place. It's going to be amazing :)
Posted 4/16/2015 2:32 AM (GMT 0)
Sorry NCOT that you're having such difficulty with a good therapist to help you get through your depression (that I KNEW you've been dealing with for quite some time now) you've had more than a lot to deal with in your life, you deserve to get help for it all and I hope you keep searching for someone in the profession to help you!!!

Glad to hear about the new place I really hope it's a fresh start for you and you get a lot of joy out of it and that things will fall into a better place for you so you can start to feel good about everything, it's long overdue for sure!
Posted 4/16/2015 3:19 AM (GMT 0)
I don't blame NCOT for feeling "meh" after colectomy. It's a difficult and complicated surgical procedure. Not everyone feels "better" after it. My heart to you NCOT. You deserve freedom from the need to be happy....blessings, zengrrl
Posted 4/16/2015 4:15 AM (GMT 0)
I love this thread on every level, it's so honest. Nicecup I am sorry you are down but it's normal right, this crap is depressing and yes, the surgery doesn't fix it! I see it so many times here where people young ones and older are encouraged to get it, like first thing!

I think for me it would have to be life or death before I take that leap! It's refreshibg to see you post that it is not an easy, perfect fix.

Nothing ever is, but I surehope you have found some relief!

I saw that commercial, I thought it insensitive to for people who had colon cancer and had no choice to get the bag! Pissed me off actually! ;-(
Posted 4/16/2015 12:27 PM (GMT 0)
I don't necessarily think it's polarizing... yes, people are everywhere from adamantly opposed to it to gung-ho, get it done ASAP! but there's a whole range in between. I really didn't have strong feelings one way or the other- I always figured if it became a necessity, well I'd get it, because I had to. And that's how it played out. Of course I feel better now, & am "happier", just because I am no longer sick. But I can't say surgery itself is what made me happier... There are may factors involved, from family & personal life, to work, etc. Yes, all of those have improved post-op, for me. Speaking from my own feelings & emotions- before I had surgery it was on the radar for a good 5-6 years. And I would research it, & read the ostomy forum- and part of me was envious of those who had surgery, the fact that it was alrady done & over, behind them, they could move ahead. I really feel that the ones who are most vehemently opposed to it are speaking form a place of fear & envy. No one wants it, but if that's your lot in life, well suck it up & deal. It's not like you're losing a limb, or mobility, or part of your brain. It's JUST an organ...
Posted 4/16/2015 12:37 PM (GMT 0)
No one wants it, but if that's your lot in life, well suck it up & deal. It's not like you're losing a limb, or mobility, or part of your brain. It's JUST an organ...

My medically inclined family gave me the same spiel about "sucking it up" and "moving on" with surgery a few years back when I was in really horrible shape. I thought they presented a false dichotomy and believed all my issues would be resolved with surgery. I never bought into their bulls*HIT for a single moment.

I chose NOT to suck it up, and NOT to deal with it. Instead, I chose to dedicate all my worldly time to figuring out my particular pathology, and I am grateful that I did.

One can't help but wonder if the choice to get surgery is dependent on someone else's expectations of how you should be in life. This is an error in differentiating your personality from another person's.

It's funny you say it's just an organ. I should probably get my brain or heart removed now. I mean they are both just organs.

Post Edited (Guardian7) : 4/16/2015 6:41:01 AM (GMT-6)

Posted 4/16/2015 12:53 PM (GMT 0)
I'm not going to fight about it, Guardian- you're lucky that you were able to not have surgery, clearly you did not "need" to get it done at that time. Others are not so lucky. For what it's worth, my family thought I was nuts to get it. Aside from my husband, not a one supported me, despite the fact that I had no other choice. I truly did not have other options... Just be graceful with the fact that you are intact.
Posted 4/16/2015 12:57 PM (GMT 0)
"My medically inclined family gave me the same spiel about "sucking it up" and "moving on" with surgery a few years back when I was in really horrible shape. I thought they presented a false dichotomy and believed all my issues would be resolved with surgery. I never bought into their bulls*HIT for a single moment."
Same here guardian7 if it was their's or the doc's colon on the line, perhaps they wouldn't be pushing surgery so hard…

Well said and I agree completely
Posted 4/16/2015 1:00 PM (GMT 0)
I have to agree to guardians point as well. I don't think her/ his post was trying to pick a fight either.

See? This seems pretty polarized to me. ;-)
Posted 4/16/2015 1:02 PM (GMT 0)
Ps: my heart is broken from life in general, dead organ and half the time I am brain dead too! I do fine without them fully functioning, much like my colon. :-)
Posted 4/16/2015 1:05 PM (GMT 0)
ha! True... maybe it is polarizing! No easy way to sum it up... some don't need it some do, & I suppose that's all there is. I don't like being made to feel that I "chose" surgery as an "option".... not that Guardian (or anyone) has done that here. My brain is pretty broken-down these days too... I swear, aging sucks way more than any typs of IBD!
Posted 4/16/2015 1:15 PM (GMT 0)
There are often posts here about how when folks are in remission they are out "living life" therefore we don't get the full picture. Isn't that also true of people who have been "cured" by surgery? Why are so many people lurking here who have had surgery? They are now cured and should be out living their lives with no need to be lurking about waiting for someone to post an opinion contrary to their own. Just wondering...
Posted 4/16/2015 1:17 PM (GMT 0)
Life is very, very short and I've always been the type of person to live it to the fullest. Over two years with a severe took life away from me. Once I realized that quality of life was reason enough for surgery, I did it. A lot of people thought I was crazy; they said it was extreme, that I should just ride the illness out. Sorry, but no one lived or walked in my shoes those years. I've never regretted the decision and have fortunately had many many years of travel and physical activity that I would not have had with UC.

Sue
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