Can People with Proctitis / UC live a long life?

Meet Roxy:

picture of Roxy

Roxy, I believe I have posted 2 years ago before. Here’s an update!
Mild UP is back, but mild symptoms fading away on its own after 2 weeks. Nevertheless going Dr to get meds up my butt since I got a colonoscopy yesterday.

Some more…

Full time mother, and although busy, I love my baby to bits!

Symptoms:

Proctitis. Very mild.
No pain, no D, no C, some mucus, minimal to no blood.
1-2 BM a day, well formed or sometimes soft.
When proctitis flare, I will fart wet gas, more mucus and seldom blood.

Roxy’s Story

I had 1 mini flare up every 2 years. And I have to add all these while I feel generally energetic and healthy, no D, no pain, and almost minimal blood.

2014, some mucus, lots of gas, minimal to no blood and no pain, no D. just minor urgency. (lasted few weeks)
First time treated with (sorry been a while i forgot the name) a pill that you put up your butt. Cleared up immediately, gas & mucus went away and been normal since!

2016 again, mucus, gas, no pain, just wet fart. (lasted few weeks)
I got pregnant the same time and opted no med, and all symptoms disappeared without a trace!! – this was when I first posted on this forum

2018 this time similar. mucus, gas, no pain, just wet fart with minimal blood. (i assume triggered by my period)
Been 2 weeks and symptoms almost cleared off on its own without meds, but since I had a colonoscopy yesterday, the Dr will see me tmr and give me meds to put up my butt again.

So overall, these 3 times are super mild, i mean compared to all the stories symptoms of others I read online. And apart from the couple of weeks of flare during the above 3 times, I eat whatever I want, junk, feeling really healthy, formed stools, no pain, no C, no D, no blood. Of course with this recent episode reminds me of UP is there, always there somehow though invisible. I decided to start eating healthy and anti-inflm foods from now.

I read many places if UP were to spread to full Ulcerative Colitis, its only 10% rate. Even my GI said that. “Over 90 percent of the those who have idiopathic proctitis never develop colitis higher up in the colon. ” But of course there are people with recurring colitis coming back online and more active on forums looking for answers so its hard to find an exact sample simply on forums. Or maybe people often in remission stop coming online to share their stories so its hard to gauge.

And also I read if UP do spread, MAJORITY does so within first 2 years of diagnosis.

So my question is, please shoot me with your positive stories of UP being in remission most of the time like me and minor mild symptoms. Please tell me UP or UC patients can live a long life! By long life, i mean of course this disease wont affect life expectancy. Or do you know anyone with UP or UC in their old age and still living well in remission?

Please make this a feel good forum! Thanks for support!

Roxy’s Current Medications:

Anti-inflm foods, Vit D, probiotics
Going to add tumeric, B complex, and fish oil soon

written by Roxy

submitted in the colitis venting area




proctitis

3 Responses to Can People with Proctitis / UC live a long life?

  1. Peter April 23, 2018 at 1:40 pm #

    Even UC can get better, I have had horrible flares two years in a row lots of blood 20 times a day, the second being a little less intense than the first and this year so far I have not had one and I usually get them at the end of winter which was 2 months ago. I think our bodies can eventually adapt. A doctor confirmed to me that vitamin D plays an important role which I suspected since vitamin D levels are low after winter which is when I have issues. I did not take 10 000 UI vitamin D pills precious years, this year I do. If after 2 years you didn’t develop worse symptoms I think you’re ok

  2. shelly April 24, 2018 at 2:29 am #

    my symptoms were similar when they first started in July 2016 . minimal blood and mucus no pain no d and I was originally treated for hemmoroids . in November 2016 I had a sigmoidoscopy which showed some inflammation and I was put in asacol suppositories and told to wait for the biopsy results which came back normal so I was taken off the suppositories and told to live with it . Not happy I saw a colorectal specialist who ordered another sigmoidoscopy which I had in September 2017 which again showed inflammation and I was diagnosed with proctitis again and this time put on Pentasa enemas . within 2 days all blood and mucus was gone . All was great until October when I started getting abdominal pain in my pelvic area which was followed by d and bloody mucus going up to 15 times a day . This was all new to me so I didn’t think it was a flare and my lbd nurses ordered stool samples to rule out infection . This all carried on for over a month and I felt so ill . I was then prescribed oral pred ,salofalk granules and pentasa enemas which stopped all symptoms within a few days and fortunately I had minimal side effects from the pred . I have now been off the pred since early January but now use salofalk granules and suppositories daily for maintenance and so far all is good and I’m hoping I never have to go through it all anytime soon .

  3. andy April 24, 2018 at 2:51 am #

    UC has no impact on lifespan generally. You are more likely to get colon cancer, but also more likely to catch it early and survive due to getting colonoscopies regularly.

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