I’m new to this. I’m here to learn and contribute. If I can get into remission, I am interested in being medication-free with focus, time, and effort. I just turned 31 and I was diagnosed with Ulcerative Colitis one week ago. As far as I knew, I was completely healthy 2 months ago with the exception of some minor things. My doctor reported that my case of UC is moderate to severe. Overwhelmed but trying to be positive.
Some more about Rachel:
An interesting question for me at this time. The last ten years have mostly been about work, health, travel, and having fun. I’m a happy person. I appreciate enjoying simple things (thinking that’s going to come in handy now). A couple months ago, I was just starting to finally navigate how to stick up for myself more at work and work/life balance. But outside work – I guess most of my interests went from being my favorite things to sources of future anxiety overnight with this diagnosis. Friends and family, restaurants, traveling, food and drinks, spin class, concerts, skiing, the beach, and just relaxing.
I’ve been on Prednisone 40mg a day for 1 week. The same day as my colonoscopy, I started the SCD, and within that, I’m only eating foods that seem to be recommended during a flare up. I have time on my hands….doing so much research (though I still feel I just started). I wish there was a way to know how long it will take to get into my first remission.
– 1 week after my worst point (which I’ll describe in my story), these are my current symptoms:
– Bleeding and cramps for an hour in the morning (between 1-6 bathroom visits), bleeding 1-3 times later in the day. Liquid, red blood and things that look like red tissue pieces
– When I need the bathroom..I need to be in there within a matter of 5 seconds
– Recent labs (April) showed I have low vitamin D and elevated alkaline phosphatase before my diagnosis
– I get tired easily but feel like my energy is returning
– Little to no poop for the last 5 days – Which is feeling VERY abnormal for me, but I think I’m digesting most of what I’m eating? Tiny tiny poop. Trying not to stress and strain in the bathroom, as I assume it’s causing bleeding?
I’m new to this. I’m here to learn, contribute, try new things, work on myself, and hopefully help others at some point. I just turned 31 and I was diagnosed with UC one week ago, after my first flare up took over my life. I found this site 2-3 weeks ago. I was severe, I had escalated to using the bathroom 20+ times per day, bleeding, diarrhea, cramping, and around a 5 second warning to make it into the bathroom. It was bad. Scary. Disgusting. The daily bleeding started April 25. Before that, I had daily diarrhea for 5-6 weeks. My GI doctor reported I’m a moderate to severe case – A week ago my colonoscopy showed UC in my rectum, sigmoid, and descending colon. My doctor stopped my procedure at that point due to the inflammation. I’ll ask her for my pictures at my first office visit on May 25 – I’m interested to see I guess.
I have never (ever) been someone who talks about bathroom-related things. I’m pretty private in general, nevermind about the bathroom. I don’t post a lot online, I’ve never even reviewed a product. Now that I’m in my first treatment dealing with this, and at the moment I’m well enough to do things on my couch, I knew I wanted to be on this site.
My focus is getting my conditions to improve. I definitely don’t have my head wrapped around longer-term plans yet…other than that I REALLY want to try to be medication-free in remission. Is that truly possible?
QUESTION: What are helpful things to say to my doctor about trying to be medication-free? I see her May 25.
– I already know she’s going to rely on medication from talking to her. I really like her as a doctor, she’s smart and experienced, and she has been great from a medical standpoint. She told me nutrition and mental health are resources where I should work with other doctors. But her advice was “stay away from raw vegetables” ….that’s it!? What about zero grains, starches and added sugars by using the SCD. Supplements, pro biotics – so many questions.
- If the Prednisone and diet have helped me for the first week, is there any way to estimate when this bleeding will stop?
- The urgent need to get in a bathroom is a nightmare. I took a medical leave from work – until June 2. Will I be able to function in an office?
- How do I get back to seeing my friends outside of my apartment? I haven’t had anyone over yet either, but I’m warming up to the idea soon-ish
- Is it normal to be having the tiniest poop ever seen? Is it bad if material is sitting in my damaged colon?
– Should I go to a nutritionist?
I’m worried about my personal life. I’m worried about becoming depressed over this. I’m worried about my parents, who are older and who are going through this with me emotionally. My mom has been in my apartment for 2 weeks taking care of me – I’m doing ok at home, but she goes out doing all the errands and food shopping. I do not know what I would’ve done without her.
Medications / Treatment Thinking:
Final notes and questions:
- I’m on Prednisone 40 mg per day for 3 weeks, then a 2-3 week taper
- Using the SCD, and within that, limiting to legal foods that are recommended in flares. Eggs, plain chicken, broth, cooked vegetables, cooked fruit/peanut butter smoothies, applesauce, etc.
- Freeda vitamins – D3, calcium citrate complete, and a multi-vitamin with iron (I don’t eat red meat, never have)
- Is calcium citrate okay in a flare up?
- Should I take a pro biotic? What’s most popular with UC?
- Does everyone get moon face with Prednisone – Is it a matter of time for me?!
I could probably go on forever here….Thank you for reading and I hope to start connecting with people soon.
Written by Rachel G
submitted in the colitis venting area