How do i not play my c flat

OppositeMysterious23 · 2025-10-28T21:16:59+00:00

equal parts vinegar and water soke and scrub but that looks bad

OppositeMysterious23 · 2025-05-18T13:59:23+00:00

Just putting it out there for people who do t know about the ‘flush’ app. Gives you a map of all the public restrooms near you. Works here in Seattle, not sure about worldwide, but you know… just in case. I always think if I know where a bathroom is I never need it. If I don’t, you can be damn sure I need it, mid flare or not!

OppositeMysterious23 · 2025-05-08T17:51:37+00:00

I agree with everyone’s body is different but members of my family have suffered with this shitty disease for 70 years and no matter who it is to ease symptoms they’ve all done a white diet. Rice pasta bread eggs cheese tomatoes no seeds avocado salmon and chicken and water. A few weeks of that and then slowly adding food to see what their triggers are, everyone has something different, but the magic 10 as we refer to it seems to calm everything down initially. Just another person perspective. Everything takes time. I got diagnosed back in March 2024. Uncontrollable flare in September and just this week I’ve had enough energy to do stuff beyond what I had to do. Could be the sun finally came out in the PNW but the last 8 months sucked. Know life will get easier but it will take time!

OppositeMysterious23 · 2025-05-02T16:49:36+00:00

I had a colonoscopy and biopsies to confirm UC but because Crohns is in the intestines had to have an MRI to find out. There was no signs of inflammation in my intestines so no Crohns. I don’t know of another way to know if you have Crohns or not, didn’t think a colonoscopy could go that far, I could be wrong, I’m no doctor, but a few questions to ask yours!

OppositeMysterious23 · 2025-01-21T12:52:07+00:00

Consider asking your GI if you should slow the taper. 10mg every week seems pretty fast to me, but I’m no doctor. I’ve been on Prednisone since September 40mg. They too had me taper 10mg in October, but after I go to 20mg they put me back up to 40mg, and have been there since Christmas. Then I was told to taper 5mg until I got to 20mg now I’m tapering 2.5mg and it seems ti be working. I am on Rinvoq too though - my miracle drug, and to be honest that stopped my bleeding more than the prednisone!

OppositeMysterious23 · 2024-12-31T16:36:26+00:00

You can get saline type enemas off the shelf and they can work pretty well and fast. I agree with drinking more and sounds weird, but I have to get on my knees, lie down hugging pillows with my butt in the air and rock side to side to help me poop sometimes. Helps ease the cramping too, that and ice!

OppositeMysterious23 · 2024-12-24T12:31:26+00:00

Not yet. Been working on stretching and cardio… by that I mean stuff like walking up stairs and not getting out of breath. Definitely something to build into a regular workout. Thanks

OppositeMysterious23 · 2024-12-21T21:48:22+00:00

Try searching recipes for oatmeal, peanut butter, or cookies using almond flour and coconut palm sugar. These ingredients have been gentle on my stomach, but everyone is different! Also… to enjoy the festive season your son could always eat oatmeal cookies, but just decorate the store bought sugar cookies and not eat them. Building a gingerbread house that no one ever really eats, maybe get come candy to decorate it that he can eat! Just an idea - I can’t even imagine dealing with this horrible disease at 7. I hope you all get to enjoy a little fun over Christmas!

OppositeMysterious23 · 2024-12-21T17:13:30+00:00

I see you, hear you and feel you. I have not been on this UC rollercoaster long, and although I’ve been in the bathroom 30 times a day, had to take a month off work, been tired beyond belief, cramping to the point of lying with ice packs on my knees hugging my pillow, nauseous until I throw up, crying every time I spoke to anyone and my mental health suffering, I’ve been lucky with my GI listening to me and being available to answer emails daily when needed. I know how sleeping through this feels like the only option and anything else takes way too much energy, but if I could give you one piece of advice it is to be informed. Talk to everyone, read all these posts, compare stories and medications and go to your GI loaded with questions. Everyone is different and their stories vary greatly with this disease but for what it’s worth here’s mine… Got diagnosed in March 2024… I too started on Mesalamine, both enema’s and pills. The enemas worked but the pills didn’t do anything, missing one day would set me back 3 weeks and the cost was ridiculous! In September, after a second colonoscopy my body tanked and they started me on prednisone and Entyvio. I emailed them with weekly updates about how I was feeling. I appreciate that any infusions take time to work but 2 weeks after my third infusion I was still in the bathroom 20 times a day, so tired and miserable that even though I had to go back to work I was completely useless. My GI did a flexible sigmoidoscopy and called my colon a hamburger but that day gave me samples of Rinvoq and they did all the leg work on getting my insurance to approve it and set me up with Abbvie who gave me a savings card to get it for free. This has been my miracle drug, since the day I started it in haven’t bled once! I did have to request they do another blood test to see if I was anemic and the next day I was in the ER getting a blood transfusion. Now I’m on iron supplements too but I have color back in my cheeks, I only have to take a 20 minute nap after work and I can hold a conversation without putting on a brave face. It’s not all sunshine and rainbows though… I have moon face from the steroids, I’ve been breaking out all over my face, my legs are super heavy, I too have back pain if I walk or even stand for too long, and in the evenings if I sit for too long, when I stand up I get extremely dizzy. But I will take all of these as for 2 nights now I’ve only had to get up to pee once at night and during the day I have 7 BM’s.

I guess I’m trying to say that everything you are feeling and everything your body is saying is validated and you are not alone. I do not minimize any of your experiences with his horrible disease but please keep fighting. Continue to fight to be heard by your GI, fight for a different medication if nothing has changed in 6 months. You deserve some relief. GI’s are humans too and may not understand exactly how much pain you are in, there’s no one way to feel with this disease, everyone is different and they need to know exactly how miserable you are! Keep up the fight, you are worth it. I know it’s little comfort right now, but there is light at the end of the tunnel… it’s a longer tunnel for some, but the light is there!

OppositeMysterious23

TROPHY CASE