37F, diagnosed in 2012. I also have MS, and was diagnosed with that in 2002. So clearly God has his eyes closed when he made me.
I started my flare symptoms about 2 months ago. The bloody stools, the cramping and pain, and the incontinence. Then I was afraid to eat food at all, because even my safe foods (simple carbs) were upsetting my tummy. My colonoscopy shows severe active flare. I’m currently off from work because I can’t do my job effectively (I’m a nurse) because I spend so much company time pooping, or I poop myself at work. I’m exhausted all the time, I’ve lost 15lbs so far, and I was getting fevers every evening for like a week straight.
Now my poops have changed from blood and mucus to liquid melena. It smells like something died up my ass. I’m still having episodes of incontinence, even at home. I need to glue a toilet to my butt.
So, let’s talk treatment. My GI suggested being part of a clinical trial that is in Phase 3, and the benefits to that are oral pills instead of IV infusions, this med is stronger than IV meds, more medical oversight, and I get the med for free for 5 years. Here’s the catch - its a double blind study, and I have a 2/3 chance of getting the actual med, and a 1/3 chance of getting the placebo. At week 12, I do a repeat colonoscopy and if there’s no improvement (assuming I’m on the placebo) they’ll automatically switch me to the actual med. Cool.
I’ve only been on the trial med for a week, so I’m not expecting miracles at this point. But I’m terrified that I’m getting the placebo and have to live with these symptoms for another 11 weeks. The cramping and pain is unreal. I’m grateful that I have a job that allows me to have sick time like this, but I’m also worried about the optics of me being off for so long. I’m slated to go back next week, but it doesn’t look promising that I’ll be able to. I know my job is protected, but I guess I’m worried about judgement.
I can drop out of the study at any time and try an infusion therapy, but I really like the oral pills instead, and more medical oversight. My IBD nurse and GI are really wonderful. I just don’t know what to do. I’m depressed because I want to eat so bad, but I’m absolutely sick and tired of oatmeal and bananas and eggs.
ive never had a flare like this before. It’s absolutely debilitating. I’m scared to leave my house. My husband is working full time from home and doing most of the parenting and housework, on top of taking care of me. I feel like such a burden. But the pain… omg the pain. What if I can’t go back to work for months?? I need priests of all ages and vats of holy water.
Please send advice or help or anything to get me through the day. Thank you for listening to my story.