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@dval

Hi! First of all, I am so sorry your son has UC. Yes it is a chronic condition, but there are several ways to treat it and some people do very well with first line treatment. I am assuming the doctor has prescribed mesalamine (some brand names are Lialda, Canasa, Asacol). These can be taken orally, rectally or both. If the UC is ulcerative proctitis, they usually start you with the mesalamine suppositories. Some people stay at that level and do well on these drugs for years! I started with proctitis but the UC continued to move up the lower intestine and became pancolitis. The oral mesalamine and suppositories worked well for me the first few months and I believe they would have continued to work well, but I developed drug induced pancreatitis and had to discontinue immediately. That's when things became worse quickly and it was a struggle and a learning curve to see what else would work.

I am hoping your son does well with the mesalamine! Next line would be steroids and they usually start you with budesonide, which is safer than prednisone, but either one is short term, just to calm things down; they are both available rectally too. I am currently on the biologic infusion, Entyvio, and that seems to be working well; however, I had started a plant based diet a week before starting the infusions and I am thrilled to report that things have been "normal" for almost 3 months! There has been NO bleeding, no diarrhea and bathroom visits have decreased from 12-15 daily to 2-3! I have also been maintaining weight (I had been losing a half pound a day!) Despite the science behind the biologic, my doctor strongly supports the plant based diet, and there is a lot of clinical evidence that it does indeed make a difference. If he starts out slowly, just eliminating dairy, and then meat... it may be less painful. I personally don't miss meat at all, but I do miss cheese and ice cream, but this new way of eating is a small price to pay after what I have been through. When my doctor told me a few months ago that the UC was fulminant, and recommended a colorectal surgeon, I was terrified.

So I would recommend that he try the mesalamine (I am assuming that's what he'll be taking). I hope and pray this will work for him and the UC will stay at this level!!! I am also taking the probiotic, VSL#3 (also recommended by my GI doc) twice a day. So, that, a plant based diet, and exercise are what I would advise, based on my experience. It is a horrible disease, but there is hope and there are many things out there that do work. Everyone is a little different in how they respond to different treatments. His doctor can monitor with labs (blood and stool) to check the inflammation markers and scope to check the mucosal lining, I wish you the very best of luck and hope I have answered some of your questions. Please don't hesitate to reach out if you have any other questions. It's amazing how much you learn when you have a condition like this, and you get to the point where you're not even embarrassed talking about poop. LOL
Good luck
Donna

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Replies to "Hi! First of all, I am so sorry your son has UC. Yes it is a..."

My GI docs (there have been several) have just seemed to try, over the years, different meds, sort of trial and error, but most don't help or have nasty side effects (budesonide). Does anyone think I'd do better to go to the Mayo clinic and get a full work-up, where they are absolutely up on the latest drugs, clinical trials, etc.? I'd be willing to go to Rochester (from Seattle) if it'll be worth it. After 20 years of this, I feel like I'm just giving up life altogether and not even trying to actually GO anywhere. I see most of you agree to how depressing it is. I would go there, also, to get more information on the plant-based diet, etc.