Hi! I'm new and ready to kick uc's butt. Ok yeah, totally scared.

Hi guys!

I am new and have UC. I think I have actually had it since I was a teenager, but was diagnosed just 2 years ago. Just had a colonoscopy and was told I need surgery. 1/2 of me is thinking, awesome! I will be cured. The other 1/2 is freaking heck out. LOL. Anyone had surgery?

Thanks!
goldminingmom.





Severe inflammation involving the entire colon. On 50 mg of prednisone and flagel. Need to consider surgery despite prednisone. Allergic to Imuran and Liliada.

Did they mention trying biologics? Some people do very well on them for long periods, and you could potentially avoid surgery. I had surgery, but I had exhausted all the medical options that were available (except trials, but I didn't want to waste time). Life after surgery has some challenges, but for me, it has been way easier than living with UC. I no longer worry about toilets, drugs, side effects, doctors, medical expenses. On the other hand it's not perfect, I go to the bathroom more often. I have some scars from the surgeries...

It seems rushed for you to make a decision about surgery right now, without trying the other options. I think if I were in your shoes, I would try to stabilize and then spend some time researching, finding the right surgeon, and making decisions based on what you learn. Of course, if you're dealing with a serious health issue, like a perforation, that could make surgery necessary.

Okay, it sounds like you may have good reason to be considering surgery. The one thing that is important to be aware of is that the surgeon's skill level is often seen as the #1 predictor to the outcome. More experience, better outcome. Even with the best surgeon, there are no guarantees.

Have you taken the proper steps to ensure you do not have any disease in the small intestine? Ruling out Crohn's is the other most significant thing of importance. If you get a jpouch, the rectum is gone. The surgeon will make a storage container out of the terminal ileum, so worrying about cancer in the rectum is not too big of an issue.

There are people who get pouchitis, which is inflammation in the pouch, or cuffitis, which is inflammation of the small cuff, but these are not frequently issues, and when they arise they can be treated with medication. Pouchitis is often treated with a course of antibiotics. it can go away for years, or forever, but in a small percent of cases, it can be chronic. If it is chronic, sometimes the pouchitis is diagnosed as Crohn's and it is treated with medications, biologics, or antibiotics. That would be tough for you since you have so many intolerances.

In my case, my rectum was in terrible shape, very refractory, and they did a procedure called mucosectomy, which strips the cells, and prevents cancer and inflammation returning. It is not always recommended though.

Definitely consult and get some info.

With a jpouch, you will go to the bathroom more often. Usually 4-8x a day, but some people go 10x or more. It depends what you eat, and on your unique situation. Going is just as easy as peeing. You can empty at any time, just push and release the contents. You do not wait around like you do with a colon. The contents will never be solid like healthy people, and we can deal with skin issues, but you learn to work with the situation. I don't take any drugs since surgery. I went from going constantly and on tons of drugs, to going about 6x a day, and using protectants on my butt as needed.

I suggest getting a second and maybe a third opinion before surgery. It seems there is a wide variety of doctors' approaches to UC, and each case is unique. Don't assume one doctor's recommendation is the only option.