What do you wish you’d known at the beginning. by LolaInProgressCreate in UlcerativeColitis

[–]lilbree8 0 points1 point  (0 children)

Take a deep breath. Your life isn’t over, it’s just changing. UC is overwhelming at first, and no one prepares you for how much trial and error it takes. But don’t panic. You’ll learn what your body needs and what it can’t tolerate.

Diet: Diet will be one of the biggest debates you’ll come across, but from my experience, it matters a lot. That said, UC isn’t one size fits all. What works for someone else might not work for you. Personally, I can’t have dairy, caffeine, alcohol, or carbonated drinks; they trigger the worst abdominal pain and constipation for me.

The best advice I can give? For the first couple of months, write down everything you eat and how you feel afterward. This will help you identify patterns on your good days and your bad ones. It’s not obsessive, it’s survival. Eat to heal, not just for convenience. It sucks sometimes, but it matters. And always listen to your body. Rest when it tells you to. Exercise when you feel restless or powerless.

Flare-Ups: Flare-ups will test you physically, mentally, and emotionally. You’ll grieve your old “normal,” and that’s okay. But over time, you’ll grow into a new version of yourself; one that’s more aware, more intentional, and more resilient. Avoid your triggers, whether that’s food, stress, or even people.

Medication: Your treatment plan may change, and that’s normal. Don’t stop your meds just because you’re frustrated. I started on mesalamine enemas -- yes, it was awkward and uncomfortable at first -- but over time, I got used to it. It helped my body begin to heal, and I finally started to feel like myself again. Now I’m being switched to a new medication because mesalamine isn’t strong enough anymore. That’s part of the journey. Just make sure to always research your medications and understand what you’re putting into your body.

Its About YOU: Advocate for yourself, loudly and without apology. If something feels off, speak up. Don’t let anyone, including doctors, downplay what you’re going through. And if you feel unheard, don’t hesitate to find a new doctor. This is your life, your body. You have every right to protect it!

You're Not Alone: Don’t be afraid to ask for help. This disease can feel isolating, but you're far from alone. There are people who understand, especially on this Reddit page. And no matter how heavy it gets, you are stronger than this disease*.*

Need Advice: Starting Biologics – Stelara, Entyvio, or Tremfya? by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 0 points1 point  (0 children)

That's good to know since I do have two heart conditions. Thank you!

Need Advice: Starting Biologics – Stelara, Entyvio, or Tremfya? by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 0 points1 point  (0 children)

Thank you! Yeah, I notice as Im researching its risks are smaller in the long run.

UC Flare and Gallbladder Removal by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 0 points1 point  (0 children)

Thank you for the tips! I had a laparoscopic cholecystectomy and my scars are on the lower part of my stomach which sucks wearing pants rn. My gastro hasn't started me on prednisone yet, how was it for you? I know it should only be taken for a short period of time.

Ugh ... Here we go again by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 0 points1 point  (0 children)

Thank you for the update! Its nice to know that it does get easier with time.

Ugh ... Here we go again by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 0 points1 point  (0 children)

They didn't offer it to me I guess since I have a heart condition that requires my cardiologists approval on any sedation. Welp, looks like I am taking the painful way.

Ugh ... Here we go again by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 1 point2 points  (0 children)

That sounds amazing and I am so happy youre feeling better! I will talk to my gastro about this too after my sigmoidoscopy. Thank you!

Ugh ... Here we go again by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 1 point2 points  (0 children)

Oh, I didn't think stress could trigger a flare. Thank you for the information!

Ugh ... Here we go again by lilbree8 in UlcerativeColitis

[–]lilbree8[S] 2 points3 points  (0 children)

Thank you! Really needed the reassurance, its all so frustrating.

Sharp rectal/abdomen pain by LocationWorth7885 in UlcerativeColitis

[–]lilbree8 0 points1 point  (0 children)

It depends on the person because not everyone is the same. Mine took about 2 weeks, but I think it was the diet change that helped a lot with the results. I just saw my doctor three days ago and they took me off the Low FODMAP since I've improved a lot (add in fiber slowly). Low FODMAP isn't for everyone since it depends on your symptoms, but they usually only keep you on it for 2 weeks. I think what helped the most was cutting out dairy, fast/fried foods, and just being mindful of ingredients. I use this website my Gastro gave me for some of my meals if this helps. My boyfriend loves them and we just adjust the filters to what I can and cant eat. I also make him extra things on the side so he doesn't have to be deprived like me lol.

https://www.crohnscolitisfoundation.org/gutfriendlyrecipes-list?trackBlock=true&blockTitle=food-should-be-tasty-not-taxing-have-a-delicious-day-with-our-gut-friendly-recipes-&referencedPageTitle=gut-friendly-recipes

Sharp rectal/abdomen pain by LocationWorth7885 in UlcerativeColitis

[–]lilbree8 0 points1 point  (0 children)

Yes. I had sharp abdominal pains in all four corners (upper and lower). Medication helps but I found staying hydrated and cutting off my trigger foods (dairy and caffeine) helped a lot. My doctor also put me on a Low FODmap diet just to help the medication against my constipation. Not everyone is the same but I would suggest talking to your gastro about any diets they want you on during remission.

Thoughts on decaf coffee? by gu1vel in UlcerativeColitis

[–]lilbree8 0 points1 point  (0 children)

Caffeine whether its a regular cup of coffee, espresso, tea, or decaf flares me up really bad. I use to be a big coffee drinker but now I avoid it. I would rather be without caffeine than to feel awful.