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Ulcerative Proctitis Newbie

Introduction:

I was diagnosed by colonoscopy. Previous colonoscopy had been done two years ago and was normal. To my knowledge I am the only one in my immediate and extended family to have this.

Some more about Me:

Hobbies are travel, reading, movies

Symptoms:

Mucous one to three times a day and sometimes none, blood on TP with BMs. BMs mostly once a day. Sometimes twice. Some days am perfectly normal, others not so much.

Ulcerative Proctitis Newbie

I was diagnosed with ulcerative proctitis in November of 2013. As a senior on Meficare I am concerned about the cost of the medications and did not refill one because I had already spent $900.00 for the month out of my pocket. My drug plan does not want to cover them and if they decide to do so there is a $4900.00 doughnut hole I will be required to pay out of pocket this year.

Overall my symptoms are improving. Lately the gas and bloating have greatly diminished,. Most days I still have mucous one to three times, at least I think that’s what the stuff is. Actually it looks like tissue discharge to me. One or two formed BMs a day, some touches of blood each time.

Do all symptoms have to be completely gone to qualify for being in remission?

I am currently using Canasa 1000mg each night. I just ran out of proctofoam which my insurance does not cover. I am seeing my GI doc Tuesday and will request a cheaper substitute such as Anusal and hope he will agree.

I am too new at this to offer any advice but will appreciate any suggestions from any of you.

Am not particularly delighted with baring my butt to my Doc. It just is not my best side. I wonder what he thinks about looking at a..holes all day.

My biggest concern is this progressing up the colon and becoming colitis.
If anyone there has proctitis and can identify with anything I would like to hear from you.

No close family in the area. However, I do have a dear friend who is enormously supportive and forever reading all available materials for helpful hints.

I live in Washington State. On the Eastern Side of the Cascade mountains.

Medications and Supplements I use:

Canasa 1000mg every night.
Proctofoam every mornings
Cal Jim and vitamin D supplements

written by Bobbie T

submitted in the colitis venting area





7 Responses to “Ulcerative Proctitis Newbie”

  1. DarleneJanuary 14, 2014 at 11:27 am #

    Hello Bobbie T.

    So sorry about your diagnosis. There’s one thing that I would like to recommend to you that I use – Balneol. My colorectal doctor recommended this to me to use for personal cleansing in preference to using moist wipes. (My UC affects the rectum.) He told me it is only available at Walgreen’s (I don’t know if that just applies to my town or all over the US). It’s about $16 for the small bottle but a small bottle can last for many months. It only takes a few drops to do its job. Balneol is a white creamy cleansing lotion that is very soothing. It is made for this purpose. I’ve used it for 1 1/2 years and I’m just about to finish the second bottle. Maybe this would help you, too, and be much less expensive. It just cleanses and soothes and is not medicine.

    Your expression, “barring my butt” is so apt and just the way I feel, too! And I also wonder how the doc can look at what he does all day! But he seems to want to make people feel better.

    Wishing you well on your health journey.

    • DarleneJanuary 14, 2014 at 11:47 am #

      Bobbie,

      I want to add a couple of things to my earlier comment. Sometimes I need something to soothe that delicate area with something a bit longer lasting than Balneol and I just use diaper ointment for babies or plain Vaseline.

      Also, I saw your mention that you’re the only one in the family that has this. That’s my story, too, as far as I know.

      Do some research on the web (from several reliable sources) about your disease to get a broader understanding of it.

      • BobbieJanuary 14, 2014 at 9:23 pm #

        Thank you for your kind suggestions. Things are going ok..not worse at least.
        Do you have suggestions on a starting point for good/bad foods?

  2. PeterNZJanuary 14, 2014 at 8:14 pm #

    Dude,
    I’d be delighted if I had only those symptoms without medication!
    I wouldn’t be surprised if it just went away. Keep your eye on it though.
    Good luck,
    Peter

    • BobbieJanuary 14, 2014 at 9:20 pm #

      Would it ever be great for it all to go away. Does that actually happen. What symptoms do you have and for how long and how do you manage things? I am on meds…Canasa 1000 mg at night and I was able to get another dose of proctofoam.

  3. Andrea MeyersJanuary 24, 2014 at 11:27 am #

    I started out 6 years ago with simple Proctitis, and after a 3 year remission, has returned as a nasty flare of Colitis. In the good old days a Canasa dose and prednisone instantly cured all symptoms. And by remission, means zero blood, zero mucus, zero cramping. Totally NO symptoms. I was symptom and med free for 3 years, pretty sure this flare was brought on by the family flu. Still working meds to get this flare to go away. But something I have found to be Integral for survival, was switching to a “low residue” diet, so that the bowel may heal. Sounds like your current flare is very small. By cutting out all fresh fruits and veggies, nuts and seeds, and maybe lower dairy content, your flare should clear up with allowing the bowel to heal with these low residue foods and the Canasa alone.

  4. BobbieJanuary 24, 2014 at 1:47 pm #

    Thank you…I will take your advice. Now…how long must one remain completely symptom free before one is considered in remission? And, how long should I continue with bland foods after the symptoms are gone? And, if the bland foods result in constipation, what is one to do?

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