Surgery not the best option

Teresa C: I had UC for over 30 years now. It has effected my eyes, skin, every large joint in my body. After my ileostomy surgery 4/7/03, I was given a better quality of life than I had for those thirty years. Someone told me you are never cured from UC, the surgeon just took out the part that UC effected being the colon aka large intestines. You never get rid of it, that's why the doctors refer to it as being in remission. Once you have it the disease becomes systemic within the body. I believe that is so true. Every year that went by and not having the surgery, I had a 40% chance of getting colorectal carcinoma. I don't want to go like Farah Fawcett did.

holy cow -talk about overkill!
I thought this was supposed to be a dialogue -moderator you have the floor and you aren't giving it up, haha

I don't have the floor beatUC, it's up to you to veto (and provide evidence to advance your side of the arguement) to whatever I say - that's what debating is all about :)

btw, you can call me Shaz (Aussie slang short for Sharon) (all my friends do) :)

Tracey C: Well I had to have surgery due to a hole from another surgery and it saved my life. I had it reversed and to be honest I hate how my body looks from the scar it left. Note: this was not from UC though.

Joann F: can't get Colon Cancer.

beatUC said...
holy cow -talk about overkill!
I thought this was supposed to be a dialogue -moderator you have the floor and you aren't giving it up, haha

I concur.

You should have stayed on your own experience with your own doctors pushing colectomy for no reason - too early. I had the exact same experience years ago (and was quite pissed), and I stayed in total remission without meds for years after. Makes one wonder their professionalism and diagnose.

You got something there. Should we ask, maybe create a poll or a Facebook page and inquire how many real UC'ers have been pushed for the operation against their wishes or better knowledge? I was one, BeatUC was second ...

Apparently colectomy is a tabu subject. Feelings got hurt. People promote colectomy in the first sign of blood (regardless of the reason) and should they need to take a pill of prednisone, which apparently kills everyone ingesting one. How many millions of people have prednisone helped?

Again, I'm all for people making their own decisions and wish nothing more than all the best to everyone.

Those who made the choice, I salute.

Well I don't usually look at this list, so I'm a little late in this conversation, but here's my take on surgery: I never ever wanted to have it, tried everything I could, drugs, diet, stress reduction etc. And the disease kept getting worse and worse. In January I was on cimzia and I got a 104.6 fever.... was terrified I was going to die, having an infection on my third biologic immunosuppressive drug. Only thing that worked at all was prednisone, which didn't work very well, and I'm already testing in the osteoporosis range. I don't think my docs pushed surgery, more said that I was pretty much out of other options.... that I couldn't be on pred long term, and all that was left drugwise were clinical trials with even scarier drugs (or tysabri, with its 35% success rate and potential fatal brain infection side effect).

I was still resisting surgery, until my job hired someone to replace me for half the semester (I teach), and my decision was all of a sudden very clear, as it has remained: I'd rather keep my job than my colon. And I don't want any more of these poison drugs in my body.

The way I decided to look at things is that at most times in history and in many places today, I'd be dead already. People die of diarrhea, of high fevers, of infections.... I tried, my doctors tried, but we just couldn't beat this disease (and I have a great gi doc). However, I am just so incredibly grateful that this surgery exists, that not only can it make me not dead, but it can give me the hope of a much better quality of life. I am grateful that smart, compassionate people are willing to become (as mine calls herself) "butt surgeons," because they surely could do something a whole lot more glamorous.....

I went into surgery thinking I probably had Crohn's -- I've been indeterminate since I was diagnosed..... now it seems more likely I have UC, but it's still not clear.

BeatUC, I'm sorry that you felt pressured into surgery. That's awful, and I can see why it would make you angry; I would have been furious and likely would have changed doctors. I can understand being totally against it, because that's how I was for most of my disease.... I am not pushing it on anyone, as I hope you are not pushing drugs and other non-surgical options on anyone. One thing I thought about when I went into surgery was, "How would I feel if they cured ibd in a year and I had to have a bag for the rest of my life?" Immediately I thought, "I'd be thrilled that others wouldn't have to suffer anymore, but I can't wait that long, I'm too sick."

Since surgery, I realize just how sick I'd been for years and years. I got worse gradually and I adapted. My life was so limited. Now I am reconnecting with friends I was too tired to see, eating foods I haven't eaten in years, and enjoying not having scary, painful skin, eye, etc complications. Everyone I know is amazed at how much better I look -- I am no longer pale and gaunt all the time, and I'm not exhausted all the time either (and that's with a frustrating complication that has left me not fully recovered yet).

I am not fully up on all the research, but there is a much cited study from 1988 by Pemberton et. al. that reported 93% of patient satisfaction with Brooke ileos and 95% with j pouches.

If you would have told me 20 years ago that I was going to have surgery that would make me poop into a bag for the rest of my life and I'd be happy about it.... well, I'd have thought you were nuts. But that is how it went for me. Of course, none of us knows what the future holds, and maybe I will have more complications, maybe I have Crohn's and it will reappear. But we make the best choices we can .... and I feel fine about mine.

Plus I will never have another colonoscopy and I'll never get colon cancer!

Be well everyone.

the only thing I can add to this post, is that in the title- you've got to add ..."for me" at the end of it. for some, it is the best option, for others, nope.

what is weird about Canada is that they dont give you the option of getting the operation whenever you want. you have to go through all the different meds before getting to surgery. If i was given a choice to have the surgery i would of got it done 2 years ago. i was really sick the first year my daughter was born. it was flare after flare. i missed alot with my daughters first year. Im doing great now with imuran and remicade but i still always have that worry that another huge flare will come and it will be worse the next time.

To the OP: The fact that you said UC "turns into" crohn's makes your credibility=zero.

beatUC said...
thanks but you know what I meant-UC can be MISDIAGNOSED and after surgery you find out it was Crohns all along. better?

And the drugs that are prescribed for UC can cause cancer and other illnesses.

UC increases our risks, the treatments for UC also increases our risks, it's unfortunate but it is the reality of UC.

Do you all realize you're responding to a four year-old post? I don't think the OP is even around any more.