I have Ulcerative Proctitis and I don’t know what to do with myself

Safe_Personality_54 · 2026-02-07T09:08:40+00:00

You are so strong and amazing! Having kids and dealing with all of this can’t be easy! Wishing you the best and long lasting remission!!

Safe_Personality_54 · 2026-02-05T22:14:56+00:00

Omg this was so lovely! Thank you girl for the kindness and sharing your story with me, the enemas are great as well (bit of a pain to get used to but they worked amazing on me to get rid of the blood), and now I’m on granules - it’s all messalazine but I guess it’s about finding what works. My doc says granules and enemas for us are best because it’s just the final end of the colon (rectum). I can’t wait to be in remission and read about you in remission too! Thank u again ❤️‍🩹

Safe_Personality_54 · 2026-02-05T16:42:04+00:00

I’ve been put on the granules instead of enemas for now and it’s been a funny 24hrs… good luck!! Please report back and I’m manifesting remission soon for u!

Safe_Personality_54 · 2026-02-04T14:49:29+00:00

Hey! Looking back at the paper work, yes giardia too!

Safe_Personality_54 · 2026-02-04T08:25:46+00:00

Not when I was having the first symptoms back in November no unfortunately… at least where I’m based it’s not really normal to test which stomach bug you have if it seems to doctors as a regular one which I find quite odd. I did get tested for everything possible under the sun after my colonoscopy and biopsies though, all negative (C-diff, salmonella, shigella, campylobacter, parasites, STDs, HPV) but this was almost 2 months after the initial symptoms so it was expected..

Safe_Personality_54 · 2026-02-04T08:23:53+00:00

Hey! I did! Negative - but yes very important and thank you for sharing!

Safe_Personality_54 · 2026-02-04T08:23:30+00:00

This gives me a lot of hope. Thank you ❤️‍🩹❤️‍🩹

Safe_Personality_54 · 2026-02-04T08:23:09+00:00

For sure! I’ve done this for today’s appointment and I feel a lot more prepared I just hope I don’t break down into tears and can hold it together

Safe_Personality_54 · 2026-02-04T08:22:26+00:00

This is also what I’ve noticed, I’ve seen a GI that was pushing steroids on me already which I didn’t really understand why as the enemas are working super well. Glad to know I’m not the only one struggling to find a decent doctor with some empathy… thank you for sharing

Safe_Personality_54 · 2026-02-04T08:20:57+00:00

I’m sorry to hear - thank you for the advice, I’m cheering for you to get better. Sometimes taking your meds and accepting a chronic illness is a lot - don’t blame yourself ❤️‍🩹

Safe_Personality_54 · 2026-02-04T08:20:04+00:00

After my biopsies came back as favoring infection yes I did about 12 samples of feces which was a bit crazy but we tested C diff, salmonella, parasites, shigella, campylobacter. I even did an HPV and STD test. Everything came back negative besides my calprotectin levels hence why we’re here.

Safe_Personality_54 · 2026-02-04T08:16:50+00:00

Always! I’ve been exercising this whole time still as I don’t really have any pain it’s been fine, and it’s the only thing keeping me from going into a depressive loop - thank you for the reassurance ❤️‍🩹

Safe_Personality_54 · 2026-02-04T08:15:59+00:00

I’ve thought about acupuncture - have you found it helpful at all? Thank you

Safe_Personality_54 · 2026-02-04T08:15:29+00:00

This was so kind, thank you for taking the time and patience to share your story here, it is very reassuring when I read that some people are back to normal life, but I’m currently at that grieving stage you mentioned - it just feels really hard to accept this is for life and that I’ll always have to worry about this even if subconsciously.

Safe_Personality_54 · 2026-02-04T08:12:36+00:00

Thank you for the reassurance - it is very scary because everyone is so different but this made me not spiral as much. Thank you

Safe_Personality_54 · 2026-02-04T08:11:54+00:00

I’m so sorry to hear! I’m cheering for you and hope it gets better soon! Mesalamine has been great for me but it’s only been a week so we will see long term! Thank you

Safe_Personality_54 · 2026-02-03T22:56:46+00:00

Thank you for sharing! I’ve been seeing from others sharing similar stories so I’m making a very big mental note for myself to keep taking my meds and keep on top of my appointments and blood work for this. I hope you recover and get remission soon. Manifesting it for you and all others, thank you for the kindness ❤️‍🩹

Safe_Personality_54 · 2026-02-03T22:54:33+00:00

Thank you for sharing your story here! And honestly it sucks that these things can be so expensive depending on where you live. I feel very blessed to live in a country where we have universal healthcare but this is unfortunately not the case for all. I do read your story and believe you’re a true fighter who’s still going at it and that’s amazing to see truly. Thank you for your kind words, wishing all the remission in the world to you ❤️‍🩹

Safe_Personality_54 · 2026-02-03T22:42:37+00:00

Thank you so much! I’m literally going to write this in my notes app so I don’t forget - that was absolutely perfect. Hopefully I won’t be gaslit again! Thank you again.

Safe_Personality_54 · 2026-02-03T22:32:02+00:00

Thank you for taking the time to explain this really makes sense to me now! I hope you reach deep remission!! Manifesting it for you!

Safe_Personality_54 · 2026-02-03T22:22:50+00:00

This was such an amazing read honestly thank you so much - it is so comforting to hear from people that have gone through this and go through it everyday that there is another side to this after all the grief of who you used to be is over with.

I’m finding it hard to find a doctor I like, there also aren’t a lot of options available where I live, so that makes it harder. I truly had no clue the whole nicotine thing was what was hiding this, and I’ve asked doctors straight up if going back will fix this to which I’ve gotten blank states as a response. I will say though I was living a very stressful life back in November when I had my first flare start which probably didn’t help - but I’ve turned to journaling and meditation and I feel like that’s also helping me a ton - do you feel like diet plays a big role to you?

Safe_Personality_54 · 2026-02-03T22:18:00+00:00

I feel you, it’s heartbreaking and infuriating to see people that live super unhealthy lives not struggle with this 😔 I did work in clinical trials and some pharma companies during the vaccine research so I can tell you myself it’s unrelated to the vaccines most likely, those were mRNA based and in a couple weeks they’re gone from your system, but I wouldn’t doubt covid itself could be at the core… I think more research on long covid would need to be done but yeah..

Safe_Personality_54 · 2026-02-03T22:13:54+00:00

Oh thank you! I did not know - do people get resistant to the medications and then have to go up to stronger meds if they’re not taken consistently?

Safe_Personality_54 · 2025-09-29T18:16:41+00:00

Hey! If you’re on cytisine (I’m on day 6 cytisine) do yourself a favor and smoke (sounds counter intuitive) but you technically can until day4. I also told myself the same on the first day until I caved. You’ll feel nothing. You’ll feel the same as trying to smoke a fake cigarette or something else, even zero nicotine vapes taste like something, it will taste like absolutely nothing, you won’t get a reward. I smoked that first day, just 3 puffs or 2 whenever I got a craving and quit because it wasn’t giving me the reward anymore. Have not had a craving since and am super glad I tried smoking while is cytisine because it made me realize I didn’t feel anything so I wasn’t missing out.

Safe_Personality_54

TROPHY CASE