Bad Colonoscopy Results

Hello all, long time observer first time poster. Just really quick to give some background information. I am a 26 yr old male and have been dx'd with severe UC for almost 5 years now. Prescription medicine has always done very little to help and always found better results with diet modification, supplementation and stress management. I have been on 4.8g of Lialda daily for a long time, at least 3 years, and in the last year or so started taking Simponi, 1 injection a month, and high doses of prednisone occasionally when things get out of hand. I was almost sure I was doing a little better as I had been gaining some weight again and the BM's seemed to be a little better but I was deceived, this disease is so hard to understand and deal with.

Had a colonoscopy yesterday, first one in close to 3 years, and the results were pretty bad. My doc said it is significantly worse than the one almost 3 years ago. He took a biopsy and it is currently being tested because he fears it may be in what he called "Dysplasia" or pre malignant (beginning steps of cancer). He literally said your colon is "rip roaring with ulcerations right now" and if the results come back positive for Dysplasia surgery will be likely. In a way I would always be relived for surgery because I am so tired of dealing with this daily and I know there can be some positive results with it but I am still nervous about it.

This disease sucks.

@07kr5 What do you mean when you say the nasty loop? Also how long ago did you have your surgery and how is your quality of life? Are you able to live a somewhat normal life?

I had 3 step surgery starting with #1 in January. Just had #3 August 21st. Everything went well. Had my surgery here in New York. Each step has adjustments to get used to. Anything u have to deal with is better then having UC. Good luck with everything

I thought I would end up with pouchitis, which isn't the end of the world & is usually handled quickly with antibiotics, but so far I've been okay thankfully. Chronic pouchitis is much more problematic because it requires long-term treatment. We have a member here who has it and manages well regardless.

Which is right for you is a personal decision and I can see sticking with the perm ileo. It allows you to keep the most of your GI tract, and requires the least # of surgeries. Most people who have them adjust well to it and end up feeling thankful to be done with UC. I have seen a few people who hate it, but really, for someone dealing with UC symptoms, it's sort of a piece of cake. With UC i literally jumped out of a car at a light and ran for starbucks, only to barely make it and have to toss my underwear. I didn't have things like that happen with my end ileo!!! If we can handle running, and pooping ourselves, or wearing diapers, this ileo is really quite a bit less stressful. With 3 steps you can try the end an decide later. If you really want "one and done", you could go for the ileo and close up and live your life healthy! I am happy I went with the jpouch personally, but I have seen people who did all the steps and realize they preferred the ileo. You have to see your yourself. Both have positives and negatives. There's a long thread in my signature "From Sickly to UC Free", i go through a lot of my experience with surgery and the appliances.

Whatever you decide, I wish you luck. I am so sorry you're having to go through this decision. It was one of the most difficult decisions of my life. You're so young, you have your whole life ahead of you. Whichever you do, you will get your health back and live a lot better. It's scary, and also kind of exciting - you will put UC in the past.

One thing to remember is that dysplasia does not equal cancer. You can't even call it pre-cancer. Some people have dysplasia for years and nothing happens, or it even reverts. My uncle has had colon dysplasia for 25 years. As long as you get it checked on once a year, you'll know if it's transforming into cancer or not.

If you've had UC for 10+ years and there's dysplasia, then your risk is much higher. But again, you have to decide what's right for you.

I think it's courageous that some people choose surgery. It's such a tough decision sometimes. I wish you luck in whatever you do.

Thanks for the advice everyone, tomorrow I will hear the results of the biopsy and will discuss on the next course of action with my GI. If dysplasia is not found probably gonna try Remicade as I have not tried that treatment yet, my only concern with the remicade is how expensive it is.