Feeling a little discouraged
Feeling a little discouraged
Diagnosed with UC (proctitis) in March 2023. Symptoms going back as far as 2014.
Have been on Mesalamine (oral and suppository) since the diagnosis. I’ve also been taking fiber supplements and daily 8mg of Imodium. And a few months ago when we checked my calprotectin levels, they had gone down from 833 to 75. I’ve not had a flare since January 2024.
So I had hoped that my colonoscopy yesterday would show some improvement. The biopsies aren’t back yet but they’re not seeing much improvement in the colon lining.
Just in a period of burn out that I’m sure we all experience at some point with a chronic illness. Hopefully I’ll try something new and we’ll see if we can get the colon lining to start repairing itself.
I wanted to follow up to say that one week ago I started taking CurQD (Yellow Protocol) by Evinature.
I want to preface anything else by saying this is a supplement of Qing Dai (Indigo) and Cucurmin (the anti inflammatory found in turmeric) and it is not a prescribed medication. It was recommended to me by my GI doctor as something to try. Evinature does say that there are studies that back up their claims about its ability to help but these studies have been paid for by Evinature which delegitimizes them a bit because there could definitely be some bias. These can also be a bit pricey and as such not everyone can take advantage of them. I am not endorsing them and they aren’t paying me. This isn’t an ad. Everyone should do their own research.
This is my own personal experience so far.
One week in, it’s already made a difference. I used to have 5-8 bowel movements a day, they were mostly liquid, they were uncomfortable. And now I’m down to 1-2 solid BMs.
I didn’t want the anti-diarrheal (Imodium) that I was taking as a preventative every morning to interfere with the results so I’ve stopped taking it for now so I can gauge whether this is actually working or not and so far it has.
I believe in science and I believe in actual results. I don’t believe this is necessarily some sort of miracle drug. But things are moving in the right direction and, well, to be frank I could use a little hope. I’d be happy to update y’all as I go.
Been there myself. Diagnosed about 3-4 years ago and had relatively no problems. This year in January I started having trouble with cramps and was given steroids and those eased up. A couple months later I was admitted to hospital because my flare was so bad, I was there for a week and I was sent home to then suffer from the same flare for a month and then I was readmitted for two weeks while they tried to be thorough. I'm on a biologic (inflixamab) now in addition to the mesalizine suppositories and tablets, I also take adcal which is a vitamin d and calcium supplement. I thought things would never improve because I'd been unable to leave the house for months and the first biologic I was on didn't help so that made me feel miserable too. From my own experience I can say things can improve, it can be a case of finding the right treatment/meds. I don't even have any trigger foods that I can find. I've kept a diary and it's not revealed anything to me and I've no idea what caused my flare up this year and the hospital hasn't told me anything either. With IBD in my experience it can just be shit luck sometimes.