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Average person that lives a full life with UC?

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Posted 4/15/2013 7:50 AM (GMT 0)
I've had UC for half a year now. So far I'm in a 5 month remission, and still going strong.
But now I'm starting to feel really afraid of the future: Will I ever need to have my colon removed?

Of course, I'm very certain there is no person on this forum that can answer such a question, but I would like to know if the majority of people with UC will eventually need their colons removed as a result of the disease?

On average, how many people usually develop a form of cancer or something similar which forces the victim to undergo surgery to have their colon removed?

Or is there a big chance that you can live your entire life without the surgery?
Posted 4/15/2013 8:25 AM (GMT 0)
I'm no doctor, but my specialist has suggested the majority of people live happily. My life is perfectly normal on medication.

Saying that, I now live with somebody who has had the majority of his removed as steroids didn't help, his life is 100% normal now.

Don't fret about the future, being afraid won't change anything anyway.  So be positive, you're in remission and keep going strong.

Posted 4/15/2013 11:21 AM (GMT 0)
Mayo says 25-30% will ultimately need surgery.

www.mayoclinic.org/ulcerative-colitis/treatment.html

NIH says 10-40% will need surgery.

digestive.niddk.nih.gov/ddiseases/pubs/colitis/

Post Edited (Eleventyseven) : 4/15/2013 5:27:29 AM (GMT-6)

Posted 4/15/2013 12:12 PM (GMT 0)
I think there is about a 20%-25% chance of developing colon cancer but I'm not sure how they figure that. Is it mostly in those that have constant problems and inflammation? Does that percentage count those that take immunosuppressive drugs?
Posted 4/15/2013 12:20 PM (GMT 0)
There are varying statistics but my one GI doc told me that 30 to 40% of UC sufferers will have to have their colon removed.

I was one of those lucky statistics! It's all good though. It's nice to be UC free and never have to worry when the next flare will rear it's ugly head or worry about colon cancer. The j pouch procedure is being done more and more today and there are many skilled surgeons that do this so having surgery certainly isn't the end of the world. Actually it was a HUGE blessing in disguise for me.

May you have a long remission and never have to worry about it! :)
Posted 4/15/2013 12:36 PM (GMT 0)
It's more like 5 -10% that will need surgery and even less than that develop colon cancer, many people here will try to scare you -just get on Google and find out for yourself.
The great, great majority of UC patients do fine on meds and lead long lives.
Concentrate on staying healthy in the present and don't fret...
Posted 4/15/2013 12:39 PM (GMT 0)
30-40% is the range I've heard most often as well. Like Marianne I'm in that group -- my surgery was eight months after diagnosis due to a medically refractory flare. That said, I'm living a very full life right now. I'm in between steps so I have an ostomy and I still have my rectum (which is still flaring), but I still feel far better and have a more active life than before surgery.

Asking if people can live a full life with UC and asking if people with UC need surgery often are two TOTALLY different questions. Life before surgery was absolute hell for me, I'll admit, but in many ways I'm glad that I got surgery when I did instead of suffering on and off for years into the future. Fear of colon cancer is now off the table for me as well (pouches still need to be scoped, but they're much smaller!). Even with my diseased rectum and my ostomy bag, I can exercise, excel at my job, sleep through the night, date, go out, travel, and eat a less restricted diet than before I was diagnosed (I'm no longer lactose intolerant). I know it's natural to fear surgery but it does not mean your full life is over... in a lot of situations it means it gets to begin again.
Posted 4/15/2013 12:50 PM (GMT 0)
2o-30% were the figures given back in 2001 when I had my surgery. It has since climbed to 30-40%. Like you I was scared when I was diagnosed and feared losing my colon. In retrospect, jpouch surgery for my refractive disease was the best decision I have made. No regrets here. Live life for today, and don't worry about tomorrow (except do save for retirement!).

Sue
Posted 4/15/2013 1:46 PM (GMT 0)
See what happens Sugarcrave? Threads like this get swarmed by people who have had surgery trying to tell you how great surgery is, sigh.. This is supposed to be a UC forum -NOT a jpouch forum.
JUst do your own research and hopefully youll be fine, living a great life with no time to post on these threads.
Posted 4/15/2013 1:53 PM (GMT 0)
Suebear,

That figure doesn't really make a lot of sense. With the emergence of biologic drugs in the mainstream in 2003, the figure for surgery should have gone down and not up in the last 10 years! My GI said 10-20% is the agreed number these days. The 30-40% number seems way to high and may be reflective of IBD as a whole (Chrohn's).
Posted 4/15/2013 1:58 PM (GMT 0)
"See what happens Sugarcrave? Threads like this get swarmed by people who have had surgery trying to tell you how great surgery is, sigh.. This is supposed to be a UC forum -NOT a jpouch forum.
JUst do your own research and hopefully youll be fine, living a great life with no time to post on these threads.
--------------------------------------------------------------------------------
"

I don't know what is your problem with this this. Let people put their opinion on things. Geez man, you're so against surgery it's scary. Some people do well after surgery some don't. Some people do well with meds, some don't.
Posted 4/15/2013 2:00 PM (GMT 0)
yes Andy 10-20% is correct -more like 10% actually,
Somedude -it's about the truth, not my opinion.
Posted 4/15/2013 2:01 PM (GMT 0)
I don't think the majority of people here have their entire colons removed because of cancer.
Cancer can be surgically removed without removing the whole colon.
No, the majority of UC'ers do not have their colons removed.
Yes, there is a big chance you will never need major surgery.

You should not live your life in fear but you can certainly make life decisions that won't put you at risk.
Probably the biggest decision is to get a good health insurance policy because you will need it for economic stability in your life. Your career choice may or may not tie into this.
UC is just one facet of life, don't let it rule your whole life.
Posted 4/15/2013 2:02 PM (GMT 0)
Andy,

As to new drugs like Remicade and Humira; for many, they are providing short term remission for folks, not long term remission so surgery is inevitable. I think those figures sound high too, but it does appear more people are being diagnosed with UC.

Sue
Posted 4/15/2013 2:04 PM (GMT 0)
The stats are all over the map because the mildness or severity of UC is all over the map- and indeed it can be over different time periods. I once had a ten year total and med free remission while eating anything, but now I am a non-responder to everything and about to have surgery. I dont "have" to have surgery but eventually got fed up with meds (especially pred, since I am intolerant of every other of the many many meds that I have tried) and a chronic level of underlying inflammation resulting in fatigue, flare worries and uncertainty- low quality of life. Many seem to do great on various maintenance meds, eg beatUC evidently so its easy for them to slam surgery.

I have been anti-surgery for years tinkering with this and that but surgery is really not the end if the world whether ostomy or pouch, in comparison with living a life of denial if maintenance meds dont work well. Since you are recently diagnosed the likelihood that you will ever need surgery is rather low, I will bet- but again, it's your body, and no one can force you to have surgery even if meds become problematic, which for most is not the case- nor do you have to take drugs forever either if you want surgery instead. If you happen to tolerate 5ASA meds and they help, you are way ahead if the game. My body never met one it didnt reject. Finally, some are lucky enough to get full remission without meds- like I said, I had one that asted ten years without even any soecial diet or supplements, but in hindsight it made me get obsessed with that goal again (via natural means not doing nothing, this time) when I would have been better off blowing this pepsi stand.

Surgery is a very personal decision in the end. For me, I had to try everything- almost- under the sun firnyear after year. I could never have jumped to surgery after a couple bad years like some newbies do, but I dont blame anyone fir wanting to just move on early. In all likelihood they saved themslves a lotof aggravation, but you just can never know.

Post Edited (Probiotic) : 4/15/2013 8:29:37 AM (GMT-6)

Posted 4/15/2013 2:06 PM (GMT 0)

suebear said...
Andy,

As to new drugs like Remicade and Humira; for many, they are providing short term remission for folks, not long term remission so surgery is inevitable. I think those figures sound high too, but it does appear more people are being diagnosed with UC.

Sue

I wonder what the surgery rates are for people on biologics like Remicade and Humira?
Common sense would say it's higher (than UC'ers as a whole) because they have not responded to lesser drugs and that these drugs will fail for at least some of these people and result in surgery.
Posted 4/15/2013 2:12 PM (GMT 0)
You're bound to find 'scary' stories on the internet. People living life don't post on forums like this, fyi. There are people that have been on remicade for 10+ years but being on this forum, one would think remicade is something that works like a few months...
Posted 4/15/2013 2:26 PM (GMT 0)
My brother has had UC for over 10 years and only takes asacol for flares. No issues, no diets, all is good. My daughter has had it for 3.5 years and our life has been nothing less than a nightmare. We've tried it all and yet we're always back to square one somehow. Surgery is the answer for many UCers - I believe it's a good choice if you have a very secure UC dx and I know many who live great lives after. It's not a question you'll get answers for as everyone's experience is so different. Do your own research and see what you feel comfortable with. I did the same when my daughter was diagnosed - searched high and low for signs that she would be normal and okay. In our case it was not to be.
Posted 4/15/2013 2:38 PM (GMT 0)
Sugar rave I've been wondering the same thing you have. Had UC for a little over a year. At the support group meeting all anyone talks about is what meds their taking or how life is ok without their colon. It bothers me that no one discusses nutrition or other non chemical alternatives especially since much of the medication doesn't seem to be working for more than a short time. It's depressing.
Posted 4/15/2013 2:39 PM (GMT 0)
I don't know what my future holds but I just hit year 21 of having Uc and I still have my colon. The way I look at is this, I'm on one of the last line meds for Uc. It's doing well for me and I've hit remission but if the time comes where it doesn't work anymore, rather than suffer for another 21 years of pain, misery, and uncertainty I will have surgery. It gets to the point, at least for me, that I'm just tired. I've been all over the board for 21 years...mild, moderate to severe flaring. I've been holding out hope that better meds will come along rather than have surgery but my mindset has changed.
Posted 4/15/2013 2:44 PM (GMT 0)
Depends on how bad one's UC is and how it can be controlled with meds...however long that may be for each person.

I've been on meds for over 24 years. I plan to stay that way..but I have no control over what could hit me or what can happen in my life that things can go totally awry.

The point is to do the research and make sure you know what's going on with your UC status and to use medications that can help control your UC for as long as possible with the least side effects that can create other problems with your health.

Stats, while provide an overall perspective for hope, mean squat for the individual subjectively.

q
Posted 4/15/2013 2:44 PM (GMT 0)
"Or is there a big chance that you can live your entire life without the surgery?"

emphatically, YES !

Posted 4/15/2013 4:08 PM (GMT 0)

beatUC said...
See what happens Sugarcrave? Threads like this get swarmed by people who have had surgery trying to tell you how great surgery is, sigh.. This is supposed to be a UC forum -NOT a jpouch forum.
JUst do your own research and hopefully youll be fine, living a great life with no time to post on these threads.

I still have UC, and I don't even have a j-pouch. Surgery isn't "great" but being free of constant pain and fear is pretty fantastic. I'm not telling anyone to have elective surgery for no reason, but I think it's important for people with UC to know that if the time comes when they have to have surgery they shouldn't fear it like grim death (the way that many here seem to -- I have seen MANY posts allege that people would rather die than live the way I do).
Posted 4/15/2013 5:05 PM (GMT 0)
Pluot- so well said. What amazes me here on this forum is how many would rather live housebound, unable to travel by air or long distance or go on vacations, poop several times on the way to work etc- just to avoid surgery. (Or even more pathetic are those who say they woukd "rather die than wear a bag"). I only experienced that level of disability in rare severe flares but in my case, even going theough the motions of a nirmal life most of the time, I have resolved to start naturally smiling again and stop the forced smile that has been my "normal" life on too many UC days.

Another factor is that, while surgery is irreversible, life is also irreversible. One can never have back the years lost to UC. As I get older and realize that every year there are fewer summers to get (that's assuming I dnt get hit by the proverbial bus tomorrow for that matter), the folly of endlessly pursuing the next excuse to avoid surgery got more obvious to me. For those who do great on maintenance meds or without any meds, though, more power to you- it's still a shame that the butcher's knife is still often the answer but as Pluot says, it shouldnt be thought if as the grum reaper but instead, for most, a new lease on life.
Posted 4/15/2013 5:25 PM (GMT 0)
I was one of those people that was dead set against surgery. I suppose that's why I stick around here because I know first hand from experience that it doesn't have to be so scary. People who have no quality of life don't have to suffer! Not everyone will need surgery but many will and its not a bad thing.......really!! And the 30 to 40% stats I posted earlier I got from a doctor. I'm sure it varies but that's what I have also read about too. It's definitely higher than 5 -10% that someone posted earlier. Geez, 3 of us in my family alone are colonless so that speaks volumes right there.
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