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Severe Total Ulcerative Colitis

I have been in the hospital for several days. I was diagnosed with severe ulcerative colitis, my entire colon has been bleeding for over a month, causing me to poop 5-10 times a day with blood. I've lost 10 pounds. My GI doctors want to start me on remicade soon. I was diagnosed with mild UC over 2 years ago. It went away completely for those 2 years and now its back but much worse. I started prednisone two weeks ago, got better for about 2 days, things took a turn for the worse, and I've been on IV steroids for 2 days now trying to get better. Im concerned my doctors want to get me on remicade basically for life before trying to see if I can get into some type of remission again. My family thinks I need to completely alter my diet (which never was that bad) I always ate lots of protein from chicken sources and ate plenty of wholesome food because I'm a very avid gym member. Ive had plenty of poor choices of food each week however, but it hasnt really been that bad. I typically don't have much dairy (with the exception of cheese), or red meat. I'm convinced that diet plays a part in UC, but it's definitely not the whole picture. I'm sitting in the hospital here just looking for answers.

  1. Hey Hellcat89, you must be in unimaginable pain.
    I'm wondering why you are so hesitant to go on Remicade. I'm on immune suppressors- Humira and went in remission right away. I'm still on them and in remission for two years now. I have no side effects and don't remember what a flare feels like anymore. I have a close friend on Remicade for Crohn's and arthritis, and she's feeling much better. No side effects. That's why I'm wondering where you picked up the idea that such medications aren't good.
    And why are you mentioning your family's ideas??? Honestly, from my experience, I regret every piece of medical advice I listened to. They told me I was fine when I was bleeding. And yeah, "drink 10 bags of green tea a day." "Eat potatoes and white bread you won't have diarrhea," I told them yeah I'm eating those foods, but I also need a blood test. At the age of 17, I had to beg my parents to take me to the doctor. They were so surprised when I was diagnosed with ulcers and moderate to severe Crohn's disease in the small and large intestine.
    From my experience, doctors know best. You can seek a second opinion, but your family didn't go to medical school. Staying without treatment can ruin your intestines. Yes, diet does play a big role in IBD. But it has to be used in ADDITION to treatment. Only in mild IBD, are diets used for treatment. But you were hospitalized! Your UC is severe! It's time to listen to your doctors.
    I hope you get into remission real soon and become healthy again.
    Jochebed

    1. thank you for your reply, I agree with everything you are saying!

  2. My heart goes out to you, it's never fun being hospitalized. Please know things eventually will get better. I'm so sorry you are in pain. I was there once.

    There are lots of options in terms of biologics that you can try. Many in the community have achieved remission with Remicade, however, Remicade is not the only biologic. Maybe if you want, ask your doctor to give you more info on biologics so you can feel more at ease in considering it. If you'd like: here is info on biologics you can take a look at: https://inflammatoryboweldisease.net/treatment/medications/biologic-therapies
    https://inflammatoryboweldisease.net/treatment/medications

    Let us know if you want any more info. Also, from my personal experience diet is key. I feel my best when I stay away from wheat, processed sugar and dairy.

    Big hugs, Elizabeth (team member)

    1. thank you Elizabeth

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