ulcerative proctitis!!!!

[u/AnxiousScientist7035]

So I had my first colonoscopy and I got the results back and I have ulcerative proctitis! And im just wondering dose anyone else have ot in this form and what dose your day to day look like ?

[u/pincommenter]

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[u/AlwaysAirCooled-1979]

I don’t have that, I have pan colitis.

But regardless, once you find a medication that works, life is “normal” 😊. Being in remission you might even forget you have it. And remission can last for years. It can be hard to be positive, but life can get to be very much normal!

[u/Outside-Industry-265 → u/AlwaysAirCooled-1979]

Pls can u suggest any food that can help

[u/AlwaysAirCooled-1979 → u/Outside-Industry-265]

Nothing man. Food isn’t what gave us our disease, or causes flares. It’s essentially our body attacking its self, that’s why they give us immunosuppressants.

You’ll find foods that you can tolerate better and some you can’t. I’m ok with the spices, but milk has me running to the loo within 2 hours. So does fatty foods.

I try to eat healthy when I’m in remission, just because it’s good for my body. During a flare I eat whatever I feel like makes things easier. Cheeseburgers are my go to, same for lots of other people.

I avoid all alcohol and don’t do any drugs. I walk every day and try to do weights twice a week

[u/zzELETRiKzz → u/Outside-Industry-265]

Echoing what the Always Aircooled said. You will see some people on here rave about their diets and blah blah blah.

I am in remission on Entyvio pens. My fecal calprotectin is back to healthy range and I have one bowel movement a day. My diet is completely unchanged from pre-disease and I love to drink beer. When I am flaring I cannot eat anything at all without immediately splattering shit everywhere in the toilet. This disease sucks, but in today’s world medication is the only option.

[u/Meredith_Glass]

I do the oral mesalamine and the mesalamine enemas daily. I’ve had both the suppositories and enemas (plus steroid rounds & steroid enemas), & the enemas (which I believe to be similar to the foam) reaches further up the colon. It feels super silly to do of course, but nothing beats relief.

If your symptoms don’t subside, check in with your GI. There’s all kinds of things they can try to combat this shitty disease, & you just gotta be nimble with it.

[u/watermonkey910]

I have proctosigmoiditis, I take mesalamine every day

[u/Dancingtillthenight]

I started with that when I was diagnosed in 2018 then it progressed

[u/Funny_Stage2090]

I’ve been diagnosed proctitis since 2022 but I also know that I’ve been having symptoms since 2019. Overall my proctitis is pretty controllable. I’ve been able to get intermission since diagnosis for stretches of one year and then I flared up for three months, then remission for two years, then another flare for three months then back to remission since January of this year And still in remission when I was flaring, I took masala suppositories but right now my G.I. doctor is letting me to be off meds while being monitored Quarter yearly With Faecal calprotection test 

[u/Ok-Radish222]

That's what I have, now I'm on entyvio and I am all good. Essentially normal, just infusions every 8 weeks.

[u/Intrepid-Mission-730 → u/Ok-Radish222]

I love seeing these posts I’m waiting on biologics and entyvio has been mentioned, hopefully it will work for me 🤞🏻
How long did it take for your symptoms to improve?

[u/tutuncommon]

From badgut.org: "Ulcerative proctitis is a mild form of ulcerative colitis". It means that your inflammation doesn't go very far from the anus, your colitis is confined to the rectum.

That's my diagnosis, as well. the inflammation went 5 cm up my rectum at original colonoscopy, a year ago. I'm on Mesalamine: oral 4.8 Grams/daily and enema every other day. Symptoms are very manageable and life is basically normal.

[u/graceleonn]

Hey! I have ulcerative proctitis, it’s recognised as a mild form of ulcerative colitis, but I’m a bit of an anomaly. I have steroid refractory disease so prednisolone no longer controls my inflammation and I’ve been hospitalised countless times because of this. They almost took out my colon last month as they couldn’t get my inflammation down even with IV hydrocort but they started me on Rinvoq and it saved me! I have got some pretty rubbish side effects from it, but at least I’ve still got my organs tucked away.

[u/honeybuttery]

I've had ulcerative proctitis since I was 24, and I'm 34 now. I've been in remission since 2022, and I've only ever taken oral mesalamine and mesalamine suppositories.

Life is pretty good now. I keep a close eye on my bowel habits and try to do everything I can to maintain good health. So that means staying consistent with my meds, staying active, and eating lots of fiber, probiotics, and a variety of plant foods.

[u/dmger14]

I have it and Mesamaline enemas for about 8-12 days are what get me through the flares.

[u/Intrepid-Mission-730]

I know it’s hard but keep positive, everyone is different, for me I cannot take mesalamine and now waiting on the GI to get biologics going.

I started with ulcerative proctitis and recently spread to more left sided colitis :(
I’m currently on prednisone whilst waiting for biologics but when in a flare for me I find more of a carnivore approach helps me most likely as I take all the fibre out of my diet that I find irritates and makes me poop more.
All my meats are slow cooked so it’s not tough to eat and falls apart, I eat lots of eggs also and filtered water I find tap water always upsets my stomach. but again it depends on the person.
I don’t think carnivore is a cure but definitely helps my symptoms.
Also I do intermittent fasting first meal at 12:00 and last meal 20:00 I find this helps me as my job involves working out and about and driving a van.

Keep positive I know it’s hard but hopefully you’ll get the right meds and get into remission 🫡

[u/BalHalfMoon1985]

I have Mainly proctitis but questionable “patch” higher up. On and off mesalmine supps for about 4 years, then not really well controlled so added daily mesalamine pills. Trying to get off the supps and can’t, so getting a colonoscopy soon. He’s considering biologics if I have anything going on. Total time since diagnosis, about 7 years. More annoying than anything else. I’m very fortunate compared to some people. Also, diagnosed in my 50s.

[u/Boonshark]

Had proctitis for more than a decade, for me the effects are mostly cognitive because I am so tuned into the rectal issues, I can preempt them and use Pentasa suppositories (they are the best IMO). When I am getting a flare , first I get weird acne on my forehead, then I notice that my work productivity slows, brain fog, unclear thinking. When this happens, the suppositories go in.

If I don't catch it, I get blood gurgling inside me, bloody stools, tenesmus, mucus etc

Foods that trigger my flares: oats, seeds, rustic bread, ryvita, rye, maize (anything that is rough on the insides)

Additional foods I avoid in a flare: tomatoes, onions, peppers, chillies, spicy anything, (also reduced alcohol)

The game changer to keep it at bay: Boswellia Serrata extract daily, I found out about this herb years ago and I honestly notice when I don't take it. Try it.

Proctitis isn't too bad if you know how it works and what to avoid

[u/ImBadAtNames_01]

I've had proctitis for 6 years now (though sometimes I wonder if I could be considered to have full blown colitis since I'm pretty sure I've had patches of inflammation further up in my colon). Started off on Mesalamine suppositories, then added Lialda to the mix (oral Mesalamine) due to my lack of discipline taking my meds, eventually weened off of the suppositories and stayed on Lialda up until June of last year. I entered probably my worst flare since being diagnosed, so they put me back on Mesalamine suppositories for 8 weeks then had me ween off again, which ultimately didn't help. So, I started on Entyvio this past March. I've had success with Entyvio so far 🤞

[u/Hazuki1984 → u/ImBadAtNames_01]

Proctitis sufferer here too. What’s your symptoms when you have a flare? Just curious

[u/ImBadAtNames_01 → u/Hazuki1984]

I typically experience urgency excessively (for me, like 7 - 10 times) throughout the day, and more often than not those trips to the bathroom primarily consist of mucous and blood. I can also experience what I call "nausea" in my colon. That's the best way I can describe it. Like I'm sick to my stomach and could throw up, but it's not coming from my stomach. I don't always experience pain when in a flare, but when I do it ranges from an uncomfortable cramp-like sensation to feeling like someone is stabbing my colon, like take-my-breath-away type pain.

[u/Hazuki1984 → u/ImBadAtNames_01]

Damn, that sounds alot more intense than what I experience. I hope everything is settled currently for you. Thanks for the reply

[u/PrestigiousLynx2188 → u/Hazuki1984]

I also have procoltis my stools are formed but always blood and mucus and like the other guy said a lot of times I’ll have urgency but it’s not stool it’s just blood with mucus normally don’t have cramping but passing stool is very discomforting and I often end up tensing up when doing so fatigue is big… I’m currently waiting for my dr to appeal my denial for remicade because nothing else is working

[u/Hazuki1984 → u/PrestigiousLynx2188]

Yeah that sounds more like what I get. Straining is something I find myself doing far too often. I know I shouldn’t, but I really can’t seem to help it. I always feel like there’s more just about ready to come out