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What are my chances of ending up with my Colon removed or a cure coming along..?

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Ulcerative Colitis
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Posted 9/30/2008 10:55 AM (GMT 0)
Just wondering what chance I have of my symptoms getting bad enough to need to remove my colon? Are the statistics that about 1/3 of people have to do this but does this happen in the first few years of diagnosis or can it happen anytime?

My circumstances are I was in a flare for 12-18 months after diagnosis then remission for 9 months ish and now milder flares or borderline remission for 2 years (if any of that makes a difference?)

Posted 9/30/2008 10:57 AM (GMT 0)
Oh yeah do you think in the next 10, 20, 30? years a cure will be found? what are the chances - 10% ? - 90%?
I don't mean removing the colon.
Posted 9/30/2008 11:57 AM (GMT 0)
Ian,

     I can only speak from my own experience here.  I was diagnosed with UC in 1998.  Had to be hospitalized at that time for eight days.  Suffered with the flare about two months and then enjoyed two years of remission.  Unfortunately, since I was feeling so well and NOT much of a pill consumer, I took myself off the Asacol.  Well, back in a flare in 2000, back on the prednisone and Asacol.  Stayed with the Asacol but in 2002, another flare.  This time the doctor switched me from Asacol to Colazal because my UC is in the rectum.  Flare lasted two months again.  In fall of 2003, another flare, this one lasted five months.  Then the doctor put me on the 6MP, which I was very hesitant to start, but hey, if it would help.  Remission lasted about a year and a half.  Sorry to say the 6MP has not kept me in remission and now, more or less, I have become prednisone dependant.  I suffer a flare every year and this last one landed me in the hospital in May for ten days.  The two times since May I was weened off the pred, boom, more D, blood and urgency.  Now back on the pred, 40 mgm to jump start again and then slow ween. 

     about the surgery.  I saw a colorectal surgeon in August.  He is supposed to be one of the top ten colorectal surgeons in the country.  He said I am NOT a candidate for surgery...yet.  He thought my condition mild to moderate.  Severe seems to be going in upwards of 20 times a day, with bleeding, anemia and loss of considerable amount of weight.  So there you have it.  I do bleed but do not have anemia, loss 19 lbs...do NOT want to lose anymore.  I am also 62 yrs old, so quite old considering most of you in this forum.  Hope this helps.

Posted 9/30/2008 12:41 PM (GMT 0)
The researchers are making progress but I doubt we will see a cure anytime soon. But I often wonder too, if by the time a cure is found will it be too late for us who have severe Uc or have had it for a long time?? I truly believe that UC is an auto immune condition. Some docs don't think it is because it hasn't been confirmed yet. But why else would the immune suppressing medications help us if it is not auto immune - this is my thinking. So how would they offer a cure for a crazy immune system - a system that controls your whole body?? I dunno - I just don't see a cure anytime soon.

As for surgery, unless it is life threatening or your quality of life has declined rapidly then it should be a personal decision. By personal I mean, you need to ask yourself - would your life be better by the end of it all?? I have struggled with Uc for a very long time and I am getting tired. But it wasn't until the past 2 years then I decided that maybe surgery wouldn't be so bad, especially if I keep flaring. Yes right now I am considered mild but it's the horrible yo yo effect that is getting to me. I am not in remission, nor have I been in a very long time. And even then it was short lived. So before you contemplate surgery, you need to do your research, think about it, know the risks - educate yourself on the whole procedure. But if you don't want surgery, then you don't have to have it either - unless of course your life is in danger.
Posted 9/30/2008 2:41 PM (GMT 0)
I think alot depends on how willing you are to do your own research and to make lifestyle adjustments, rather than waiting for the magic pill to come along. My uncle suffered with UC for years and finally had to have his colon removed. The doc that removed it said it was "rotten" and should have come out years ago. To my knowledge, he never tried any treatment other than steroids (both oral and rectal).

When I was diagnosed, he and his wife assumed I would follow the same path of meds, suffering and eventual surgery. But I spent a couple of years educating myself, trying various approaches, experimenting with diet, supplements and meds, until I found the combination that works for me. Now, every time they visit, they're astounded by my return to health and want to know what made the difference. I'm a firm believer in learning all you can, taking a multi-prong approach and being willing to make sacrifices in exchange for improved health and digestion.
Posted 9/30/2008 2:43 PM (GMT 0)
There is no timeline for surgery. Some people who have been diagnosed with UC end up in surgery one week later, others end up with it after 30 years with the disease. There is no way to know if you will be one of the 20-25% who have to have surgery. I wouldn't spend too much time worrying about it although I know that it's hard not to worry about. When I had UC I constantly thought about the disease (even in remission) and wondered why I had it, where it came from, how to control it, and especially how to ward off surgery should I need it. Funny now 7 years post surgery I don't think about any of that anymore. Surgery has given me the freedom to move on from obsessing about the disease, the medications, the side effects, and how it controlled my life at times. Once again one of the primary reasons to have surgery is for quality of life issues. If your disease is managing your life and interferring with work and social acitvities than surgery should be considered.

Sue
Posted 9/30/2008 3:04 PM (GMT 0)
If you're asking a statistical question, it depends on how far your colitis extends. If you've got pancolitis, you are on the higher end of the widely-cited 25-40% figure.
Posted 9/30/2008 3:11 PM (GMT 0)

I was told that if Remicade doesn't work, then I'll have to get surgery. One GI told me that they aren't researching for cures; they're just looking for meds that will prolong remission. Another GI told me the same thing and that meds like stem-cell will take a VERY long time to come out.

Surgery is a personal decision and it can happen anytime. I've only had UC for a year and half, and I almost had surgery (and I still may end up needing it).

Posted 9/30/2008 6:24 PM (GMT 0)
I have pancolitis...and I was told if Imuran didnt work, that surgery was my next option.  I have been perfectly healthy for a few years now, so it's tough to imagine that next step.  But I have suffered since the age of 1 years old (37 now) so I know my odds are good that I will lose the colon eventually. My dad had cancer 2 years back and other males on his side died of the same disease.

But...considering I was bedridden on prednisone 3 years ago and now have the best health Ive had in years, I want to try to think there is a *chance* I might beat the odds.

Michele

Posted 10/1/2008 11:55 PM (GMT 0)
Remicade after Imuran, traditionally, as an option before surgery. Cost comes into account for many people.

I would recommend to everyone that I met with UC to balk at surgery until you just can't take it anymore. We here on these types of sites tend to be a small cross section of those with diseases that can be debilitating. Most people enter remission. So don't give up on that thought. Heh, My GI told me yesterday morning in his office that I was in his 5% book. THe 5% of people that he treats with colitis that isn't controllable with the lower guage meds and remission accomplished in short time frames. He said the other 5 GIs at his clinic all have similar 5-10% books. Does that make me feel particularly good? No. But at least he was honest with me, and I value that. Having said that, he also said that in his 5% book alot of thoes people eventually come out after remicade and other long term treatments. My disease is just as stubborn as I am.
Posted 10/2/2008 1:14 AM (GMT 0)
I was diagnosed in March 08. Right now im in my senior year of high school =] and i REALLY dont wanna miss out on all the fun so i was planning on getting surgery after i graduated but none of the medications are working. My doctors tried the two best meds out there..Methotrexate and Remicade and they arent working right. SO my only other option he said was to get surgery. My dad wants a second opinion but hes just stubborn and i dont think i can wait that much longer before i get the surgery. My colitis is pretty severe. Never give up hope though =]
Posted 10/2/2008 2:06 PM (GMT 0)
I think it's a very personal decision as to how much suffering and fear of relapse (even when in remission) you want to put up with. I am on my final straws even though so far no dysplasia (some close calls but second opinions changed it to no dysplasia) and just mild to moderate. But i rarely am able to get off pred without flaring. Anyway, the problem with all the potential cures and wonder drugs being researched is that the timelines are so slow- 10 years plus before they are accepted in the US, sometimes even longer. If you are a new UC patient that may mean a bonanza in time, but if one has had it for some years I think that's way too slow. Though it is frustrating and hit and miss, I advocate trying to cure yourself by other means that are not yet approved in the U.S.. I got some results using TSO (pig whipworm eggs) but not enough to get me off pred, and I also tried hookworms believe it or not, but 5 months of that didn't do anything (worms seem to work better on crohn's, and very well on allergies and asthma, I have noticed- eg my own hay fever was 100% cured under TSO alone as a side effect). There are countless other things one can try, but there is not a great deal of data... I am going to try biologics next and if I don't get into a lasting remission the next few months will probably fast track surgery.
Posted 10/2/2008 2:46 PM (GMT 0)
Isn't the TSO really expensive and you have to order it from Europe?
Posted 10/9/2008 8:15 AM (GMT 0)
Thanks for the replies - Statistically do most people have surgery after a lot of years of the disease? Or when they are first diagnosed?

For other people if your first flare was the worst does that mean you have continued to improve or can things get worse as well?

And what about only having 6-9months remission in 4 years although my symptoms are usually mild (occasionally moderate) the disease never really feels like it has gone away....
Posted 10/9/2008 3:29 PM (GMT 0)
I think one of the hardest parts of this disease is that everyone is different and responds differently.

For me, I have been ill for a relatively short period of time, but have extremely aggressive disease, and have never had any period of remission. I have lost too much of my life to this illness, and my children and family are suffering along with me. All the meds I've tried have failed, and I MUST get off the prednisone, the side effects of muscle atrophy are getting to be worse than my disease.

So I have chosen to have a colectomy. Interestingly, my surgeon feels that I do NOT have Crohn's, but rather a new category of UC that has a Crohn's-like presentation. My disease is limited to my colon, for now at least. He is going to create the j-pouch, and we will see whether it works for me or whether I will have the bag permanently.

Either way, I am at peace with things. I am tired of fighting with my innards, and am ready to feel better, even if it requires a drastic change to my body and lifestyle.

Sorry that there are no easy answers...
Posted 10/9/2008 3:35 PM (GMT 0)
I'm not sure if people know the actual statistics b/c everyone's so different. What I do know is that there isn't going to a be a non-surgical cure for a long time. If you're really getting fed up w/ the disease, maybe it would help to have a consult with a surgeon and weigh your options b/w surgery and big-gun meds.

Pibbin, good luck with your surgery!
Posted 10/9/2008 3:49 PM (GMT 0)

Pibbin said...
I think one of the hardest parts of this disease is that everyone is different and responds differently.

For me, I have been ill for a relatively short period of time, but have extremely aggressive disease, and have never had any period of remission. I have lost too much of my life to this illness, and my children and family are suffering along with me. All the meds I've tried have failed, and I MUST get off the prednisone, the side effects of muscle atrophy are getting to be worse than my disease.

So I have chosen to have a colectomy. Interestingly, my surgeon feels that I do NOT have Crohn's, but rather a new category of UC that has a Crohn's-like presentation. My disease is limited to my colon, for now at least. He is going to create the j-pouch, and we will see whether it works for me or whether I will have the bag permanently.

Either way, I am at peace with things. I am tired of fighting with my innards, and am ready to feel better, even if it requires a drastic change to my body and lifestyle.

Sorry that there are no easy answers...

Pibbin your post really interests me because its similar to my diagnosis. My doctor says he thinks I have UC, but says (despite scopes and biopsies) there is no way to know for sure yet.

Good luck with your colectomy. I have heard good things about this for people who have really struggled.

Posted 10/9/2008 3:56 PM (GMT 0)
Thanks for the well wishes, sunshine and comedydork.

My surgeon apparently just had an article accepted for publication proposing a new category of diagnosis re: the indeterminate forms of IBD/colitis.
Posted 10/9/2008 3:59 PM (GMT 0)

Pibbin said...
Thanks for the well wishes, sunshine and comedydork.

My surgeon apparently just had an article accepted for publication proposing a new category of diagnosis re: the indeterminate forms of IBD/colitis.

My doctor said I have IBD Crohns/Colitis. So I am glad you said this.  But he still feels it is UC most likely.

You are welcome, please tell us how it goes.

Posted 10/9/2008 6:46 PM (GMT 0)

I know what you are going through. I was diagnosed with UC December of 2001. I was a Junior in high school at that time and was very scared. I am now 24 and married and UC has really affected my life and my families lives. I would go into remission for three to four months and then have flares for eight or nine months straight. This time I haven't been in remission for two years. I haven't been able to work or do anything a normal person would do for over six months now. I have been on almost every medicine out there to treat UC and none of them have helped me, but that doesn't mean they can't help the next person. We are all different and our bodies respond differently to treatments. I will be getting a surgery Oct. 15th of this year, and I am scared and excited at the same time. All I have to say to everyone with UC or any similar disease is be optimistic, everything will be ok. 

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