Why not surgery?

isnt there another forum where these surgery-specific subjects can be discussed with other folks who have had surgery?
I don't mean to be rude, but I thought this was a forum for people who are battling UC but haven't resorted to surgical intervention as of yet.

@musicmaker - Everyone likes making a jab at Somedude >_>. Nah, it was nothing you said. This is something which runs deeper.

@beatUC - Yeah, but they don't like my opinions. So I can't post there.

Edit: Hadn't seen ks's post. All I can say to that is: quite.

Somedude said...
That's the beatuc I like lol

Great post.

NCOT - so sorry for the ill responses to you from our fellow ostomates - totally out of line. I felt the same way here when I was trying to find a medicinal combination that would work & I could get my GI on board with. I often felt like many were pro-diet and anti-meds (especially Prednisone & biologics) but I had no options left & gave them a try in isolation, just reading and not daring to post because it would upset me that many were against the meds. For this reason I didn't dare post on UC board about surgery, just lurked around like the creeper that I am :)

Guess maybe that's part of why I feel this should be an appropriate place to discuss it.

beatUcWe could approach healingwell with the proposal to have numerous UC boards, one that is dietary, one that is medicinal, one that is considering surgery, one that uses both meds & diet..... where would it end?

I've frequented this board for many years now, and even moderated it for a short time. It's always been a board where all the options for treatment were discussed, from those with objective evidence (medications, surgery) supporting them to those supported primarily by subjective experiences (diet, supplements.) And everything in between. I hope it will remain that way, with everyone's opinions respected. If we don't agree with someone, we don't have to respond. I've learned to try to state my experience/opinion and move on. It really isn't worth arguing about something where everyone has their own course.

IMO, the one constant that's required to decide for surgery is to give up hope for a non-surgical cure in at time frame that's acceptable to you. I never have reached that point; others reach it quickly. We all see the world through the lenses of our experience and lifestyle.

Ok, so surgery terrifes you, beatUC. That's fine! If it does, though, then why do you read these threads?

Personally, I'm glad that we talk about surgery on here. Even though I'm doing really well, I still like knowing what could happen post-surgery and like knowing what the surgical options are. That way, if I'm ever in need of emergency surgery, I won't feel so helpless or uninformed or scared. Also, if it ever looking like the meds are failing me, it'll take less time to research/understand the options.

I get that there are other forums in which surgery can be discussed. But surgery is a treatment for UC (note I'm NOT saying cure) so I do think it should be an allowed topic.

beatUC said...
yes I am terrified of surgery, no doubt. And reading posts about how some find their stoma disgusting etc, is even more terrifying. It's been very, very difficult dealing with my UC over the years, it has changed my life drastically. I have such a hard time just dealing with the meds, the urgency and the stigma of having this disease that surgical removal of my colon is something I have nightmares about and rightly so.
Please understand that my life has been altered by UC so much that I can't face further altering and am just holding on through flares much of the time, hoping I don't end up back in the hospital. One of my family members took his own life a few years ago after having his colon removed, this obviously adds to my fear.
I don't mean to offend anyone, but I think there are other forums to discuss life after surgery and hopefully this forum is for we that haven't crossed that terrifying bridge yet.
Thanks

Your best bet then is to just ignore these threads. I can understand your fears. I lived it. But, these are real discussions that a lot of people need to have. There is no reason to go else where to discuss them. This is a UC forum and people that are facing surgery need somewhere to go and get support. They should not be alienated just because it makes someone else uncomfortable. Just don't read these threads and you won't have to squirm. I sincerely hope you never have to worry about having surgery since you have such a deep, deep fear of it.

I gotta say that I find Somedude's attitude about what is "normal" really really sad. What if you had a child who needed hearing aids, or oxygen, or a feeding tube, or even just had a congenital deformity? I think part of being a mature adult is recognizing that people who judge or treat others poorly just because they're "different" are foolish and cruel. I would hate to raise a child to believe that the most important thing is to be "normal" and avoid being "looked at."

Also, I hate to break it to you Somedude, but no one can tell that I have a bag except for my boyfriend and my doctor. I wear tight pants, shorts, skirts, crop tops, whatever I want. I go to work, to the gym, to the beach. Even if I'm so "abnormal," the only people who know are my doctors and my family and close friends, and they respect me enough to know that happy and healthy is far preferable to fitting an arbitrary cookie cutter description of "normal."

One thing I've always found STRANGE about this board is that although it's just called "Ulcerative Colitis", most of the time it is more like "Ulcerative Colitis except for surgery". As mentioned above, 20-40% of us WILL have surgery in our lifetimes. One of the big mysteries in epidemiology right now is that even though there are many new UC treatments, the surgery rate has stayed *the same* for the past 10 years instead of declining. Unfortunately surgery as a fact of life for UC patients is here to stay. I think we should discuss it openly on this board instead of acting like it's the bogeyman. I remember crying the day I was diagnosed when I read that surgery statistic, just thinking it would happen to me SOMEDAY, not knowing it would actually be eight months later. I wish I had seen more personal stories of how WELL it can go so I wouldn't have been so scared.

I have never had a problem with the stoma being "gross". My main complaint is just that because I have a loop ileostomy (a kind of temporary ileo), my bag fills up faster and sometimes I have to empty more frequently. Here's a video of me changing my wafer on my first stoma (an end ileostomy -- I've had two different ones because my surgery is in three steps): www.youtube.com/watch?v=26rpN2ECnQE. That was when I had only had the stoma for about three months, so it took me ~10 minutes to do the change. Nowadays I have it down to 3 minutes... I actually did it while chatting on speakerphone with my mom today Maybe others see it differently, but even though I've only had a stoma for six months, when I look at that video it doesn't gross me out or repulse me. That's just my body.

None of the above is directed at anyone, I just want to state how I feel... well except for the stuff directed at Somedude. Sorry dude.

Pluot said...
Unfortunately surgery as a fact of life for UC patients is here to stay. I think we should discuss it openly on this board instead of acting like it's the bogeyman.

It's definitely the 500 pound gorilla in the room. No one wants to discuss it.

I don't agree on many of the things Somedude says but I appreciate his honesty. He says what he feels and he doesn't care. And at least he says it with humor.

You are right Somedude, I didn't like my stoma but I liked it better than UC. :)

Don't worry, I'll be your biggest cheer leader if/when you get a j pouch! ;)

it's much easier to be real here than it is to be real out in the world -

that is very true,

but trust me, I've gotten into some heated debates in real life also.

I am more reserved at work, understandably. lol But if they be pressing me, I'll give it to them.