Reddit thread snapshot: 1ke5tw7
source_class: reddit-thread ingested: 2026-06-29 backend: opencli reddit read
- author: anonymousposter987
score: 16
text: >-
Any positive ulcerative proctitis/colitis stories?
Hi! All I ever see on here are UC horror stories - debilitating cases, severe progression, hospitalizations,
surgeries, etc. However, when I read the data, it sounds like the majority of people are able to manage their
symptoms, find medications that keep them in remission, and live a normal(ish) life. I’d love to hear some stories
like this on here.
My husband has ulcerative proctitis. He was diagnosed 5 years ago. He has had 2 colonoscopies since diagnosis and it
has not progressed. He manages his UP with oral mesalamine. He flares up about once or twice a year. His primary
symptom in an active flare is blood in his stool - nothing more. He takes a mesalamine suppository at the start of a
flare and it knocks in out in a couple of days. He has had about 2 flares that were a little more intense (diarrhea
2-3 times a day, bloodier stool than usual, lasts 2-3 weeks). These both occurred during times of extremely high
stress for our family. But colonoscopies after each showed no progression (still just UP). Of course, it would be
great if he could get in complete remission with no flares. He reacts well to the suppositories so I think the plan
is to be on both oral and suppository mesalamine daily going forward.
But either way, I’m curious if it’s possible that his UP will stay UP and stay mild. It doesn’t impact his day to
day life all that much except for the toll it takes on his mental health. He reads these horror stories and is so
worried that he will end up that way. Of course, we know it’s possible, but I feel like he has a pretty good chance
of being ok. His is only proctitis, his symptoms are mild, he responds well to medication, and he hasn’t progressed
in over 5 years. It could potentially stay this way forever, right?
type: POST
- author: 27rutabagas
score: 9
text: >-
I was diagnosed 16 years ago and am still on mesalamine. I use oral all the time and occasionally add suppositories
and then budesonide (and just a couple of times prednisone) as needed. Mine's still pretty mild, I have occasional
small flares but have gone a few years at a time in remission and can now tell when I'm about to flare. It helps to
catch it early. Stress is by far my main trigger. It can stay pretty mild, we just don't come to Reddit to
commiserate as often :)
type: L0
- author: hazi1008
score: 2
text: ' > do you experience side effects of oral mesalamime?'
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
- author: Tiger-Lily88
score: 8
text: >-
About 2 thirds of proctitis cases never progress past the rectum 🙂 It’s just that people who are doing well are
unlikely to run to Reddit to ask questions or commiserate. Many are in such deep remission, they forget they even
have it.
type: L0
- author: Lafcadio-O
score: 7
text: >-
We should all keep in mind that the folks who are doing fine aren’t as likely to be posting here. For instance, my
wife got a j-pouch in 2012 and has been doing really well for over a decade. Sure, she avoids uncooked vegetables
and has to use the restroom more often than others, but she’s not bleeding, takes no meds, is active and doing
great. She’s also not in this group.
type: L0
- author: No-Country6348
score: 5
text: >-
I was diagnosed 20 years ago and spend most of my time in remission. When I start to feel a flare, I can usually
tame it pretty easily with mesalamine enemas. I don’t take any maintenance drugs in the meantime. Idk why this is
the case, just lucky, as i don’t live any special lifestyle. For the past two years, I have been on semaglutide for
weight loss (and now maintenance) which slows digestion and causes constipation but I have UC flares too, it’s all
been weird, but manageable.
type: L0
- author: Angry_Luddite
score: 5
text: >-
I was diagnosed 18 years ago. I've been in the hospital once for 10 days. Otherwise I have been able to manage with
Mesalamine both oral and enemas. I went for long stretches without taking anything, but going forward now I plan to
stay on my maintenance dose. I'm 48 now and don't want to end up with colon cancer. I also was afraid of the
biologics because of not wanting to take an immunosuppressant, so I'm happy that I'm dealing with it as it is. I had
to give up alcohol and coffee, and I try to keep hydrated. I also take psyllium fiber on the regular, and try not to
eat too much unhealthy food. But I do have the odd chocolate bar or a bag of chips, not going to lie.
type: L0
- author: anonymousposter987
score: 1
text: ' > Why did you give up coffee and alcohol? My husband is considering doing the same. We haven’t noticed that either causes a flare but we have noticed that they both make flares worse when active.'
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
- author: Moist_Network_8222
score: 4
text: "Diagnosed with UC a little over a decade ago after 8+ months of horrible symptoms. I started on mesalamine the day I was diagnosed and got drastically better quickly, basically being back to normal after six weeks on mesalamine.\nSince then no flares, nothing. I've just been a normal dude who takes some pills every evening. I take mesalamine daily, see my gastro annually, and have a colonoscopy every 2-3 years.\_"
type: L0
- author: MarauderFireboldt88
score: 2
text: >-
He either needs to have a conversation with his gastroenterologist or find a new one.
If he's getting into remission with suppositories...perhaps he should only take those. It's maintenance drug! I
along with many others take mesalamine suppositories nightly. That's the only medicine I take nothing oral.
He will have to find the right combination for himself.
Side note- benefiber & Miralax keep me regular and that helps a lot too.
type: L0
- author: OnehappyOwl44
score: 2
text: >-
I'm not going to rewrite my whole story. Long story short my illness came on suddenly. I spent a month in the
hospital teetering between life and death (fulminant Pancolitis, Toxic Mega Colon and Sepsis) but when I was
discharged I had 2 doses of Remicade on board. Since then I've had my infusions moved closer together and the dose
has been doubled but I was in full visual remission after 6 months, clinical remission at 1yr and have lived a
normal life since then. 4yrs and counting. I eat what I want, take long motorbike and car rides and have no
lingering biologic side effects. I also still have my Colon even though the Surgeon I met 4yrs ago was positive it
was a lost cause. I don't even feel like i have an illness now. Feel free to search me in the forum I've told my
whole story several times. All this to say it doesn't always turn into a nightmare. my first medication brought me
back from the brink and has kept me there.
type: L0
- author: hazi1008
score: 1
text: ' > thank you'
type: L1
- author: hair2u
score: 2
text: >-
Im on oral and rectal mesalamine regimen (treatment/maintenance) for 36 years...good colonoscopy results and
mildest flares possible. Architectural changes have realigned...good story to me.
type: L0
- author: hazi1008
score: 1
text: ' > did you ever wean off the mesalamine or has it been daily for all those years?'
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
- author: ConnectPersimmon6701
score: 2
text: "Hi there ! Diagnosed 5 years ago and I have not had a flare since. Anything is possible ! I’ll never forget what a nurse told me when I was crying in hospital after being diagnosed, she said - it’ll never be this bad again because now we know what it is and you will listen to your body!! I would actually say that I’m healthier now than I was before this all happened. I really listen to my body, I eat what works for me, and exercise regularly. Sometimes, a knock is as good as a break :).\_\n\nI also wanted to share something with you. My grandpa had type one diabetes for 75 years. Lived to be 97. His doctors credited different treatments and diets for his success but our family knew the truth - my grandma was a fierce advocate for him and a diligent caregiver. Love is what kept him healthy. You’re a wonderful partner, and he’ll be okay because you’re looking out for him. Best of luck to you and your husband!! \_"
type: L0
- author: hazi1008
score: 1
text: >-
I am in tears of relief to read these posts. UP confirmed by biopsy two days ago. still no word from doc. been
flaring since trump took office. i am very alone. 59 years old. lots of fear. started qing dai to see if it
helps. will probably be in mesalamime soon. It happened last year for ten weeks but stopped either spontaneously
or due to all my herbs and supplements. Then clear colonoscopy at ten weeks, and they said it must have been an
infection. Last year’s apparent flare started two weeks after a covid bout.
this time flex sig showed 6 cm of UP.
i am very reluctant to stunt my immune system.
type: L0
- author: Tiger-Lily88
score: 3
text: ' > I have 30 cm of inflammation and went into remission with prednisone, now maintaining with just Mesalamine. You might never need to stunt your immune system 🙂 Most cases of proctitis are easy to get under control and never progress past the rectum.'
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
- author: Turbulent-Tale-5565
score: 1
text: ' > Did the Qing Dai help?'
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
- author: '[deleted]'
score: 1
text: '[deleted]'
type: L0
- author: Zealousideal-Elk7023
score: 1
text: |2-
> Just started azathioprine. How much can you drink alcohol while taking it? Or did you have anytime higher liver enzymes while taking azathioprine? I hope I will have a similar effect with my pancolitis.
>
> I know it is very individual, but so far I feel fine taking it and If I could still drink on social occasions, it would be great :) So far I thought alcohol is not good with it.
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
- author: hazi1008
score: 1
text: >-
In your collective experience, when solidly in remission, are there still foods you avoid to avoid triggering a
flare?
type: L0
- author: NoPeak111
score: 3
text: |2-
> It will be wonderful if the collective experience regarding food, drinks etc, could be more available as a reference.
>
> I have been diagnosed with Pan colitis about 4 months ago and am still 80% unsure of what I could eat and drink. I eat toast and fried eggs at least once a day, avoid rough fiber like granola and muesli and drink a lot of tea.
>
> Your go-to foods and stuff to avoid will be golden information!
type: L1
- author: anonymousposter987
score: 1
text: ' > For my husband, the only things that we are 100% sure trigger a flare are high stress, processed meats (mostly sausage), and fizzy drinks (champagne and seltzer/tonic water). He can generally do light alcohol and coffee and most other foods with no problem. But once he’s in a flare, he has to go on a pretty strict high fiber diet to clear it.'
type: L1
- author: BandietenMajoor
score: 1
text: >-
diagnosed while i was trying to finish my bachelor. it was rough, had to out everything on hold untill i found
treatment that worked. sometimes we thought we found it, but it wasnt sufficient and i ended up pushing myself
harding than i should have.
now i have treatment that works for me and im not just able to work full time but im also thriving professionally.
sometimes its just trial and erroe
type: L0
- author: utsuriga
score: 1
text: >-
I was diagnosed almost two decades ago, it was a pretty bad flare, didn't help that it took half a year for me to be
diagnosed (yay shitty healthcare system). But once that got sorted out it was honestly more of a mental issue for
me, to learn how to manage the condition, make necessary lifestyle changes, etc (especially because stress is
absolutely my main trigger). I've been on mesalazine ever since (Pentasa tablets -> granulates) and by now I can say
UC has actually gotten *better.* My flares are more rare and less painful, actually I've been in remission for
almost two years now.
Honestly, I keep saying this: the reason you see horror stories because most people looking for support and venting
outlets are those who have it *really* bad. People like me don't post as much because well, no point in posting "my
UC was fine again today"... :)
type: L0
- author: Scared_Theory2963
score: 1
text: Just being honest
type: L0
- author: wiggyma
score: 1
text: >-
I was diagnosed 35 years ago. Been fine with changes to my medication over the years. If I flare, then I need to
watch my diet and take mesalazline suppositories. I usually just take mesalazline for maintenance. I have developed
IBS and sometimes mistake a flare up of that for the start of an IBD flare. I need to be aware of urgency and the
feeling I've not emptied as symptoms that bother me. Generally if IBS and IBD are calm then I can eat anything.
type: L0
- author: jwiley3
score: 1
text: >-
I had about twenty years of flare:no flare roller coaster. Then I got on Entyvio and I’ve had no symptoms for 5
years. Get on a biologic.
type: L0
- author: hazi1008
score: 1
text: |-
for the same reason this post happened i am
thinking about starting a Positive Ulcerative Colitis Stories subreddit. anyone up for subscribing???
love to you all
type: L0
- author: Optimal_Doctor7690
score: 1
text: >-
UC diagnosed 10 years ago, mesalazine pills after lunch and disease in remission, completely normal life even with
some sporadic excesses.
Now I have had a flare of inflammation but due to the fact that I was not at all regular on mesalazine, in the last
period I was taking it on average 2 times a week instead of every day. Now the gastroenterologist prescribed me
topster suppositories for a month. I'll let you know but I'm confident.
Rather, I have heard doctors who say that diet alone can make the disease regress, does anyone have experience in
this sense?
type: L0
- author: Scared_Theory2963
score: 0
text: >-
5 years for me. Yes it has really affected my life. My wife left me. She says I can’t deal with this. Really
sensitive to the sun.
type: L0
- author: anonymousposter987
score: 3
text: ' > Looking for positive stories here'
type: L1
- author: ''
score: ''
text: ' [+1 more replies]'
type: L2
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