Pancolitis and chances of needing surgery/getting cancer ???

Hey everybody , so ive been going through a lot of the Healing Well UC forum topics and im feeling really down about having pancolitis. Im just wondering if surgery is inevitable?? I have moderate/severe Pancolitis and im just scared of all of the stuff that i've learned about it however im not sure what's accurate/hoping its not. Anyways what are the chances that i will eventually need surgery or develop cancer???

Don't be scared of surgery, it gets a very bad reputation from people who don't know much about J-pouch surgery and have not had surgery.

If you talk to most former UC patients who have had surgery they will tell you that they are very happy with their surgeries and the outcomes, they are much happier with J-pouches than having UC symptoms.

I had my first surgery of a 3-step J-pouch 2 weeks ago as of today. The surgery went better than I expected; I really had very limited pain and have been off all pain meds for about 4 days now (including Tylenol). I just feel so much better now that I don't have UC symptoms and I am off most of my UC meds (tapering pred @ 10 Mgs).

I was diagnosed with pancolitis in January 2009. I was probably in he "severe" category, based on the number of bowel movements I was having a day and some of my other symptoms.

However, that first flare is the only one I've had. I did have to use a (relatively short) course of prednisone to gain remission, but since then I've only had to use mesalamine-based meds. I do know that I'm quite lucky that mesalamine works so well for me, but I'm also very, very careful to take my Apriso daily and I still use a mesalamine enema twice a week. I also take a probiotic supplement each day and eat a relatively healthy diet (not much junk/processed food).

So, at this point, I feel my risk of surgery and/or cancer is relatively low.

joshlieb said...
Anyways what are the chances that i will eventually need surgery or develop cancer??? confused confused

The prognosis of uc varies greatly for each individual so nobody can answer you for sure. UC can be unpredictable and most of it depends on how well you respond to treatment. Some people with pancolitis find a medication combination that works for them, they achieve remission, and stay there a very long time. This disease can be problematic if the person does not respond to treatment, as persistent inflamed areas of the large intestine can develop spots of dysplasia or polyps which can then turn into cancer over time. I would say that is key, can you find the right combination of treatments (a process that involves trial and error) and if you can then over the long term your prognosis would be good. If you do not respond to treatment, then surgery would be your ultimate outcome, as your quality of life without treatment would be difficult if not unbearable. Like others say, surgery is not necessarily a bad outcome. It really all comes down to quality of life, and what solution gives you the best quality of life you can attain with this lifelong, chronic disease.

Just know that pancolitis isn't necessarily a sentence to certain surgery and cancer. There are some people here with pancolitis that do well and have for a very long time. Are your odds worse than somebody who is initially diagnosed with Proctitis or Proctosigmoiditis, yes but it is hard to nail a statistic on how much of a difference we are talking about here.

As far as screenings go. Generally, 8 years down the road you'll start getting colonoscopies every few years as that is when the cancer odds start to increase and therefore more regular monitoring is recommended. Generally colon cancer is slow spreading, so screenings often catch it early. Like others have stated, the odds of cancer are pretty small for uc as a whole.

Surgery is not inevitable. There are so many different meds/diets and combinations to try that you should be able to find something that works for you. Some of the people who have the surgery just want to get it done. It is not necessary to have, but it is what they want. As others have said, a majority of them are very happy with the surgery, so even if you have to get it, it is not the end of the world. You might be upset that you waited so long though as some are. Me personnaly, I don't want the surgery right now as Remicade is working for me. If in the future it stops working I'll probably try Humira and any another meds that might have come out by then. If all meds fail, I'll opt for the surgery. Who knows, maybe a cure will be released in the next 10 years.

Hey, thanks for all the replies!!! You all have really given me a more positive outlook on the whole situation and I'm so grateful that this forum exists!!! If the time ever comes where surgery is the only option i guess it's not the end of the world, but until then ill just hope that the meds will work and do my best to not let this disease get the best of me:) ... Hey Quincy im currently tapering pred at 10mg and have had my first infusion of Remicade last week with my second one coming up next week... So far so good!!