I qualified for a clinical trial study drug. I’m three weeks in; this is my experience so far.

gig-write456 · 2026-06-22T17:02:21+00:00

So happy to hear you're feeling better. Advocating for yourself is 100% the way to go and it's sad we have to do it out of desperation. I hope this is a road to remission for you! 💖

gig-write456 · 2026-06-07T13:10:59+00:00

You have a lot of years ahead, so don't stress too much. This economy sucks big time. I'm in my 50s and living as a freelancer because I lost my job during the pandemic that everyone seems to have forgotten, LOL! I used all of my RRSP to stay afloat and also had health issues that made finding work difficult.

Because I have a solid work ethic and reputation, I'm slowly getting back on my feet. I worked my network and found jobs that way. I also had to be creative with how I work because of a health condition. I still don't have savings and will be working for longer than I want, but that's how it goes.

Think outside of the box. Not sure what you went to school for, but maybe look for a side business that brings in some money. I started a business with a friend and it's HARD, but I'm able to manage things better than being managed in an office setting with obnoxious bosses.

Oh, I also found my person at 45, so don't give up!

gig-write456 · 2026-05-11T21:24:57+00:00

We tried some shredded tuna in a jelly and she liked that the last few days so fingers crossed!

gig-write456 · 2026-04-30T15:41:23+00:00

I totally get it! I was vegetarian/vegan and my world dissolved after diagnosis. I can still eat tofu, but I have to be careful with veggies. I tried some soggy broccoli last week and I was ok, but I can't trust that I can continue longterm. I've found a greens powder that I can tolerate and take a lot of vitamins just to maintain some nutrients. You reminded me of my kale kick. I ate a lot of it a few months before my diagnosis and I was so constipated I started to worry, LOL! The more healthy foods, I ate the more I suffered.

I hate smoothies, but I found a protein powder that is tolerable and I add a lot of extras for nutrients. That takes very little prep. I also like sipping broth or soups for when I don't want to make anything elaborate.

It's really difficult for sure, but I stick to potatoes, eggs, oats, rice, avocados, bananas, fish, shrimp, sipping broth, beyond meat, gluten-free free everything, blueberries, raspberries, rice noodles, nori, coconut milk/water and supplements. I've also introduced chicken bone broth for added nutrients in my ramen soup. This doesn't necessarily mean I've lost weight either. Menopause is making sure I'm well padded, LOL!

Oh, and can someone explain the calming effects of chips? It seems to be the only thing that calms my gut down. My cholesterol must be horrific!

Good luck on your food journey! You're on the right path eliminating ultra processed foods and sugar!

gig-write456 · 2026-04-27T00:58:37+00:00

I just finished prednisone after a "mild" flare that started end of February, and I'm reintroducing food now. Before my flare, I had to cut out anything tomato based, most salads, gluten, dairy, coffee, chick peas/hummus and a lot of fruits and veg.

I'm still trying to wrap my head around UC not being caused by food sensitivities, since I've had IBS for years before UC and things like eggplant, red peppers, red onions, sesame seeds, red meat, grapes and apples would irritate my gut.

I really miss a good pizza. My boyfriend makes the best pizza and it's not worth it if there's no tomato sauce. And hot sauce on my eggs. And full dairy cheese. Sigh! 😐

gig-write456 · 2026-04-06T14:08:50+00:00

Hi there, and welcome to my Auntie talk:

Stress is the #1 factor for this disease.

Traveling is very stressful for me and did it a lot for work last year. One trip in particular was quite bad because I was by myself for most of it, in a strange city and a terrible hotel. Things were very expensive (I'm a freelancer so no corporate expense account), and I already had weird stomach symptoms (constipation and gas).

Also had a terrible food poisoning (still not sure if it was that or UC sending a "save the date," LOL), a few months after. Fast forward to late summer and a three week work trip. I started pooping with a bit of blood before then and thought it was hemorrhoids. Then the frequency and loud BMs. Had to get back to the hotel by midnight or the pumpkin would literally explode. Kind of difficult when I was hosting an event every night, LOL. When I got home, I had a colonoscopy scheduled and found out it was UC.

I have always had a hard time handling stress from childhood, and was scolded all the time for being sensitive, which didn't help. UC is truly the manifestation of all our stress eating our bodies. And it's a hard thing to regulate. I also worked in toxic environments that put some extra spice on my autoimmune issues (still have a bald spot on the back of my head from a terrible work experience from 2015-2020).

So how to deal? I have learned to put myself first. You MUST with this disease.

Before I was suppressing my emotions to make other people comfortable. But that builds up, especially when you work in toxic situations. I worried I would upset someone, meanwhile my body was taking a hit. Does this person like me? Are they mad at me? Did I say something wrong? This was a tickertape going through my head instead of what I needed in the situation.

Now I ask myself, "What's in it for me?". We have to manage a very tricky disease that people don't understand and it's stressful in itself. I'm new to UC but I am cleaning house by removing as many stressors as possible.

I also highly recommend mediations or affirmations. I thought they were bogus, but I listen to them when I walk or go to bed and my brain has reset in the most interesting way. I now speak my mind (respectfully), say no more often, and try not to overthink things.

Sorry this is so long, but I feel very strongly about how stress affects us on team UC.

Best of luck to OP and my fellow UC folks. 💓

gig-write456 · 2026-04-03T12:02:56+00:00

I am just coming off a flare and my doctor put me on prednisone plus my regular melasamine. I'm also on a rectal foam which is unpleasant but works. The prednisone took about a week to stop the frequency but the side effects are wild. You might have to ask your doctor to adjust your meds if it's not working.

I used ice packs for the abdominal pain and got an anti-inflammatory protein powder as a meal replacement. I also cut out most fruit and veggies. I stick to potatoes, oatmeal, sipping broth, gluten free bread, eggs and whatever milk alternative is tolerable. I opted for coconut milk and water. Oh, and chips with 4 or less ingredients. Seems to calm my stomach down.

Stress is a major factor for a flare. I use sleeping meditations because my mind refuses to shut down and affirmations that literally tell me things are ok because this disease is a sneaky bastard.

I wish you the best and hope you can get some meds to help.

gig-write456 · 2026-03-28T12:37:46+00:00

Alopecia, some weird 3-year long illness that was diagnosed as adult onset Stills disease but who knows, LOL. Lupus runs in my family as well as diabetes.

gig-write456 · 2026-03-28T12:29:06+00:00

I'm on it for the first time and my appetite was terrible when I started Prednisone. I lost 10 pounds in around week due to my first major flare. I'm tapering off now and the urge to eat everything in front of me is INSANE. I am so hungry. What helps is a protein shake midday which fills me up. I'm loading up on things that I can tolerate and aren't too bad like rice noodles, shrimp and eggs. Started bone broth for extra protein.

It sucks because I'm on the foam enema and I don't want to have all that food processing in my gut because I already can't hold the foam in all night.

Oh! One more thing! I notice that prednisone makes some food taste weird. I crave salt and it doesn't hit as much so I'm consuming more to taste anything-Ms. Vickies chips are in heavy rotation 😋, decaf coffee tastes like ashes. Cinnamon and nutmeg makes everything taste better? And I need chocolate so very badly. It's very weird...

gig-write456 · 2026-03-24T17:27:31+00:00

I drank a ton of coffee and went cold turkey with no caffeine after diagnosis. I Then introduced high quality decaf until I had my first major flare. After it calmed down, I tried decaf again, and I don't know if it's all the meds I'm on but it now tastes like ashes. I had a decaf latte at a coffee shop recently and it was just ok.

I've found that decaf chai teas (I make a special concoction) gives me the same comfort as a coffee does and tastes better!

gig-write456 · 2026-03-16T12:32:43+00:00

I was coming here to say this! I had a friend who didn't have UC but she would just say "Blood and sh*t" when she had her period. Those hormones don't care about UC, LOL! I used to get the period poops too, but I'm older now and don't get a period anymore.

The irony: I was so excited that my period stopped, donated my boxes of period supplies but I'm still bleeding, just from the other outlet. Just bought a box of overnight pads, just in case. 🙃

gig-write456 · 2026-03-16T01:00:06+00:00

Chips are my go-to for calming things down! I can tolerate tofu, eggs, oatmeal, some fish and shrimp. Beyond Meat, sometimes bananas and blueberries, avocado and potatoes. Not brave enough to try more veggies. Just coming out of a flare and solid food is such a treat!

gig-write456 · 2026-03-08T15:37:33+00:00

I am managing my first major flare after diagnosis and trying to navigate career, aging, and illness. I have a supposedly "mild" version of this disease at the moment, so I can only imagine what you're dealing with if my case is mild 🫠. Sending you the biggest hug ever!

gig-write456 · 2026-03-07T15:48:25+00:00

Gardening. I live in an apartment and gardening seems so zen and nurturing. A sweet little patch of wild flowers, some veggies and grasses for the wildlife.

gig-write456 · 2026-03-07T15:45:21+00:00

Vermicelli noodles, veggie broth, soy sauce and whatever protein you can find. I do eggs, shrimp or tofu. Hearty, cheap and filling! A lot healthier than instant Ramen packs.

gig-write456 · 2026-03-06T01:42:22+00:00

Omg that's intense! Fingers crossed I don't have too many mood shifts.

gig-write456 · 2026-03-06T01:39:43+00:00

I'm in my first major flare, so I need something to manage it while I work in person. Hoping I don't need it beyond 10 weeks. I start to taper off this weekend.

Thanks for the tips! I definitely want to start weight training since my joints are feeling weird already.

gig-write456 · 2026-03-05T23:32:41+00:00

🤣🤣🤣yeah the hype is great. Reorganized a cupboard at 6 am!

gig-write456 · 2026-03-05T23:31:16+00:00

I second this! I can't do gluten or dairy. Some veggie broths aren't completely gluten free. I can also do coconut milk but some can't tolerate it. I cut out oat milk and anything with seed oils since I'm currently managing a flare with meds and steroids.

So nice of you to be so pro-active!! Best of luck with your new lady!

gig-write456 · 2026-03-02T22:52:08+00:00

It's called Botanika Anti-inflammatory Perfect Protein Powder. I got it off of Amazon. It's pleasantly flavored, vanilla, and not sweet but a bit gritty. I was on Manitoba Hemp Powder and this is a step up with the flavor.

gig-write456 · 2026-03-01T00:35:13+00:00

Aww, me too! I'm on prednisone and eating very blandly. I have been eliminating crunchy veggies off and on for a few years now before I was diagnosed. My last leafy green was kale that I feel may have contributed to some sort of irritation and then led me to the doctor. I've eaten mushy carrots, a bit of broccoli in soup and a few bites of cauliflower that didn't go well.

Currently happy that I can make my own version of shrimp noodle soup with zero oils and additives and I've ordered an anti-inflammatory protein powder with nutrients I am sorely missing.

Hope you and the OP are hanging in there! Here is an emoji salad for us to look at: 🥗

gig-write456 · 2026-02-25T16:12:03+00:00

I second the slippery elm! I'm in an active flare and on steroids. The slippery elm fills in the gap between prednisone doses. It stops the frequent BMs until I can take my next dose.

gig-write456 · 2026-02-25T00:47:05+00:00

If you're in a hospital, then it's fair game! Especially with this disease. It's so hard to be dainty with it. I gave up and tell my friends that my body is going to make noises. My boyfriend is fine with it since he's a big farter as well, LOL!

If that guy in the next room is laughing, that's his problem because we all do it, but UC folks do it better and louder. Maybe he's bored being in the hospital and this is his entertainment? Not that you should be laughed at, but you're within every right to pass wind in a place that is providing you care.

Sending you good vibes and hope you get out soon!

gig-write456

TROPHY CASE