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I’d like to meet others with ulcerative colitis

Digestive Health | Last Active: Jan 29 5:24pm | Replies (49)

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@sus9

Hi, I have had UC now for 4-1/2 years and it has progressed from mild (I was comfortably on Lialda) to severe at this point. I’ve been in a flare since the end of Feb. and am now in my second prednisone taper, as well as Humira, which isn’t working (it’s detected at good levels in my blood, but ain’t doin’nothin’!), so my dr. is switching me to Stelara. Anyone have any experience with Stelara? I’m really hoping it works, as it is scary when you don’t go into remission on a new drug! Forever flare up, no thanks - feel like I’m dying when I’m in this flare for so long. Thank god for the prednisone - though I know it’s not good long term. I definitely don’t drink coffee anymore or raw veggies or spicy food or the smoothies I was making earlier this year to get more veggies in my diet, now I bake them or stew them or roast them. Then, I read that the drugs can put you in remission for 3 years (or more?), what then, a different drug? A stricture? A fistula? Surgery? Colon cancer? And not knowing exactly what makes UC progress is frustrating because then you can’t avoid whatever it is. It’s hard not to think about the future with this disease and it’s so much worse when there’s pain! I use Tylenol, but not needing it with the prednisone taper. I definitely keep exercising and try to keep a positive attitude, rest and eat smaller portions to feel more comfortable. Though exercise and a positive attitude is difficult when in a flare, abdominal cramping, under eating, waiting for Humira to work, and not on prednisone. I’m putting a lot of faith in the doctors right now to sort this out and keep asking them questions and communicating with them through the patient portal. Good luck to all!

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Replies to "Hi, I have had UC now for 4-1/2 years and it has progressed from mild (I..."

I do not know if this is helpful or not. Our son Michael had UC for many years just as he was doing his Trial HSC and he lived on Prednisdone for quite a number of years which was not good at his age. He got so bad that they had to take his large bowel out and mould a new one with part of his small bowel. Luckily they did because part of his large bowel was precancerous. He did have some issues along the way with it, having to wear a bag for a time as everything had to heal but today, with some restrictions, he is enjoying a full life.
He is very happy and no Prednidone in site. Dr Peter Loder did a great job to which we thank him very, very much.