Severe Total Ulcerative Colitis

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

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)

I hope you are doing OK now? I can only talk from personal experience, and being a member of the IBD community for many years. Personally, I wish I had been given something like remicade sooner. It might have made all the difference. Like you, I was in the hospital with a serious flare, and the IV steroids didn't do much. I ended up having surgery less than a week after going in because the medication options I had wouldn't have been able to help. If something like Remicade had been on the table as an option then that could have prevented me from needing surgery. But, it wasnt available back then.
There is zero evidence that diet causes inflammatory bowel disease. Certain diets can help some people control symptoms, but it's really not the cause. You're certainly not the first person to have had it said to them though! It's actually a very common suggestion from well meaning friends and family!
~ Sahara (Team member)

I'm happy to report today that I'm going on 2 months now with no symptoms. I will say that it's been a combination of some luck and research which has allowed me to get to where I am now. There is no way to tell what factor caused me to get such a bad flare up in the first place, but I would say it's a combination between stress, covid vaccine, Covid, and low hormone levels. I would hardly attribute my symptoms to diet at this point approximately 2-3 weeks after my first covid vaccine, I was experiencing bloody bowel movements. When I finally got to the hospital, I was informed that I was Covid positive. There's some articles I read in the article suggesting that the covid vaccine "may potentially cause flare ups in autoimmune diseases", but the risk of covid makes it worth the risk (I dont agree!). When I was in the hosptial, the doctor had me in IV steroids 3 days, they seemed to work well. Once they switched me off the IV steroids back onto oral prednisone, my symptoms worsened again, and the doctors were all suggesting remicade treatment asap. I did not want to go down that path yet. And I'm glad I didn't. I looked into some more clinical research while I was stuck in the hosptial and read some interesting articles showing significant proof that low levels of testosterone in tbe body increases youe bodies inflammatory response. I called my endocrinologist and ordered some tests. Turns out I had very low testosterone levels. I decided to get put on hormome therapy treatment for life over remicade. Clearly the better choice for me. Being on testosterone therapy has increased the quality of my life in many ways. After my second round of IV steroids, my doctors released me from the hospital on the 10th day with another oral steroid taper to send me home with. I'm happy to say since ive been released ive had no IBD symptoms and I'm off all medications besides my testosterone shot every 2 weeks. Which is fine. Testosterone has made me stronger, more confident and overall happier. I'm convinced the combination between all of the factors I exlained in the beginning of this post put me in the hosptial, but ill place the blame the most on covid vaccine and the low hormones.