Do UC patients NEED to have surgery?

DISCLAIMER: I am not against anyone who has opted for surgery. This is my own personal view of surgery for myself. If that method works/ed for you, power to you! This is just my opinion in regards to my body.

I was newly diagnosed in April. I just read about the surgery options for people with UC and I'm terrified...I'm fearful of anything to do with surgery, and would much rather treat myself with medication.

I've been on prednisone from April 10th to June 28th and I am on Sulfasalazine now as my maintenance med...but I'm reading about how many people opted for surgery even though they didn't think that would ever even be in question for them.

I really, really, would much prefer to stay on my meds if I can help it. I'm currently in remission and my maintenance med seems to work just fine. If not, my GI says we can keep moving through the 5-ASAs or move to a higher class drug.

Someone please tell me that I can have a normal life..I just recently turned 18 two days after starting prednsione and having a colonoscopy and endoscopy. I'd love to go to college and not have to worry about surgery being in my future.

I was diagnosed when I was 17 years old. So far I have been doing well with Remicade and Imuran (not together). So far so good, I kept my colon. I am now 29.

It used to be a 30% risk of surgery over lifetime, and higher for those diagnosed young. With the newer drugs, this number should be much lower, but I have not seen an update. As even newer meds come out, the lifetime risk should keep getting lower.

But, the risk is not uniform. Even when it was 30% on average, some had almost 0% and some had almost 70%

So, if you respond well, and use maintenance program (medication or some nutrition that has proven out in your case), you could reasonably hope to avoid surgery. IF you get severe flares, have hospitalizations, develop pre-cancerous regions ... etc, then surgery may be more likely.

I would say to live life, keep your UC monitored, and not worry too much.

heyitsmiriam: I thought you said you were in remission? If so you aren't doing anything but stressing yourself out about the future. Stress can actually trigger a flare. If you've really researched surgery then you should have discovered that only about 25% - 40% of UC'rs require surgery at some point. That means that at least 60% don't ever have surgery and, as DB pointed out, that is an old figure. Most people don't ever opt for surgery unless their meds quit working, at which point surgery is welcome. But, you are a long, long, long way off from that. Have you ever heard of the phrase "self fulfilling prophecy"? One example of that could be stressing out so much over something that may never happen, like surgery, that the stress of that itself causes you to flare and you eventually wind up having to have surgery. You're 18 and in remission. Live and love your life and have fun. You could die in a car accident tomorrow. Don't spend your life worrying about a future where you don't even know what the future is.

viva la vida!! chica

Diagnosed at 15 and now 31. Taken many medications and new ones keep coming to the market, you can live a normal life.

Don't get scared about prednisone either, it works and gives you a life until you can rely solely on a maintenance medicine.

I cringe sometimes at the misuse of statistics in relation to illnesses. We should be careful at how we dish these out but more importantly how these are interpreted. They have the propensity to worry people unneccessarily and also give false hope. A recent survey of Wikipedia health pages by health professionals found that as much as 90% of the statistics quoted here were either correct or had been written so as to give an incorrect interpretation.

There is statsitcal evidence from epidemlogical surveys in the mid to late 1990s that about 25% of UCers would need surgey. But it is important to remember that this is a broadbrush figure which summarises in relation to a wide range of variables...age,sex,location of inflammation etc. One should not take this to mean that for me there is a 1 in 4 chance of needing surgery. Rather it means on the average a person with UC has a 1 in 4 chance of surgery. There is no such thing "as the average been different for different people". That makes no statistical sense. We all have a profile determined by our gentic make up, some of us will respond differently to the disease, meds etc and inherently there is a probablity attached to each of our cases about needing surgery (or more correctly opting for it) - not some kind of average.

Also these large trials were conducted over the lifetime of indiviudals in the 70s,80s and 90s and so they results of the trials must be qualifed as applying to individuals who were treated for UC during this timespan. Drugs like Remicade etc are very new on the market (cicra late 90s) and there is simply no full data on how the precise effect of these drugs have on surgical outcomes for individuals over a full lifetime of 15-30 years - granted there are indications that these drugs work well.

It is good to have summary statistics which help define the likely outcome of diseases. But be careful how these statisics have been derived and to which individuals and chorts of patients they apply. For a newbie diagnosed person I would say worry first about the qualitiative nature of your disease and get the facts. Do not try and place trust or worry in the numbers. It's not the way to tackle a condition especially at the outset.