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Hey there Hupshi,


I'm 22, also diagnosed towards the end of my undergrad. I went through a year of pancolitis without remission until I had to have surgery.


It sounds like you have tried a number of drugs, but have you looked into things like the Specific Carbohydrate Diet, fecal transplant, Low Dose Naltrexone, and other treatments that are both safe and work for many people? As you may know, the immunosuppressive drugs only mask your symptoms but do not treat the underlying cause of IBD.


Please do not let anyone tell you surgery is a "cure." This is a last resort for people who are either going to die from UC or for whom normal treatment cannot give them an acceptable quality of life. Before I had surgery, I exhausted absolutely all reasonable treatment options, including Humira, multiple significant dietary therapies, and even fecal transplant. I am glad I did so, because I would feel like going into surgery without having covered all your bases first would be irresponsible.


At least for me, my expectations were set very high by my doctors. Most people do well with a jpouch, but if you do not there will be no going back to your colon. This is a really big roll of the dice.


You must understand that things will never be the same as they were:

-if you have a **good** outcome you will have 4-8 bowel movements a day.

-bowel movements will be liquidy and will contain acid and enzymes that may burn.

-you can "eat anything..." but you might pay a price for it in the bathroom later.

-the surgeries were the most difficult thing I have ever been through in my life.


I'll be honest, I came into this surgery being told I should have an excellent outcome, and so far things have been extremely disappointing. At age 22, I am considering a permanent ostomy to give me an acceptable quality of life.


My advice to you is this: go have a surgical consult, and come armed with serious questions, including "what can go wrong? What complications could I have from this?" Talk to an ostomy nurse or ask your GI if you can meet people NOT on the internet who have j-pouches or ostomies. Consider the possibility of a permanent ostomy, as it is a much more predictable surgery. Do not let your doctors skip over this possibility without consideration.


But before you do all of that, make sure that you have tried everything reasonably possible to keep your colon with an acceptable quality of life. There are much safer  ways to getting your health back (not just drugs, although you should consider trying remicaide or entyvio too) than having surgery and if you are responsible you will try them first.

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