49 Year Old With Ulcerative Proctitis

I was diagnosed approximately 4 years ago with ulcerative proctitis (my UC is limited to just the distal part of the colon).

I was at that time 45 years old. My doc put me on Lialda and Canasa suppositories. These didn’t work and I’ve had to use steroid enemas for flares over the last couple of years. I underwent a colonoscopy in August after going thru the worst flare ever and had to miss work for over a month. During this time I was diagnosed as having grade 4/4 ulcerative proctitis and my doc said that if I didn’t start on Imuran (immunosuppressant drug), that I could easily end up with rectal CA in a few years. So, of course I started on Imuran and still take Lialda daily. I tried to talk with my doc about diet and he just waved his hand and said, “diet has nothing to do with your problem, it’s all auto-immune). The good news: the Imuran has helped some, still have a little bleeding but not much and over all more control over Ulcerative Colitis Symptoms such as bloating, gas, diarrhea, etc. The bad news: for me the Imuran has caused major hair loss, constant joint pain and lots of swelling. I even got a prescription for Lasix to take off some fluid. Perhaps I will try the UC diet. I’m sure it can’t hurt and I could stand to loose a few pounds. I want to be around to continue to raise my 11 year old daughter.

I enjoy being active and love my work as a nurse.

I don’t want to be disabled.

I just want to feel good again.

Has anyone out there had experience with this type of UC that I have?

My doc says that with this type, it usually doesn’t spread upward, stays just in this area but is very stubborn in healing.

Can anyone relate? Any other suggestions?

Colitis Medications:

Canasa suppositories work to help with bleeding. Steroid enemas work but have terrible side effects and can be used only occasionally. Imuran has helped some but still having some bleeding and the side effects are terrible too.

 

written by: Sophie’s Mom

submitted in the Colitis Venting Area

Tags: imuran





8 Responses to “49 Year Old With Ulcerative Proctitis”

  1. Still HopefulDecember 22, 2011 at 1:42 pm #

    I CAN relate. With me the story changed every time I had an appointment with my doc; it won’t spread, be careful or it will spread, I’ve never seen this before, this stuff usually works well, most people don’t have these side effects, food doesn’t cause this, what are you eating that’s making you sick? etc. According to Elaine Gottschal in Breaking the Vicious Cycle (a must read) food doesn’t cause the problem but some foods can really feed the disease. In other words, if you want the fire to go out, don’t keep putting wood on it! I’ve been on the SCD for about six years now. I still have some problems but I feel like my body at least has a fighting chance at recovery which I don’t believe is possible with super strength meds that do such nasty stuff to the body. You might find that while following the SCD the Imuran or Lialda will work better and in much smaller dosages, dosages that your body can tolerate adequately. My attitude is that no diet (unless it’s all sugar) can do as much harm as all those meds so it’s worth a try. Good luck to you!

  2. UC mamaDecember 22, 2011 at 1:50 pm #

    Hello,
    My UC started as ulcerative proctitis, but over the years (approx 14) and a few bad flares, it’s progressed to around 40 cm. Still contained to left side though. It seems like many of the GI docs say diet doesn’t matter, but it does, and you’ll get plenty of patients who attest to the affect diet has on our bodies. Stress as well. Neither cause the IBD, but both contribute to worsening and or improving the symptoms of the disease.
    I have permanent narrowing/scarring, so most likely I will end up having the surgery, but as long as I don’t develop obstruction and as long as my biopsies come back normal, I’m going to try to go as long as possible before having the surgery. It’s not the end of the world to have it, and you’ll hear that it can greatly improve the quality of your life.
    My advice to you, try to follow the SCD diet. We all have our own “intolerances” to food, you just need to pay attention to what works for you.
    Good luck!
    .

  3. Peter NZDecember 22, 2011 at 5:14 pm #

    Yo Mama,
    I got some stuff called “Colifoam” used it 3 weeks and it sorted me out. Have stopped taking it for about a month now and still seem fine.
    Never know with this jolly old colitis though – gets ya when ya least expect it.
    Good luck to you,
    Peter

  4. Dede CummingsDecember 22, 2011 at 7:31 pm #

    Dear Sophie’s Mom, I agree with UC Mama. Definitely follow the SCD! I have Crohn’s-Colitis, had a partial resection five years ago. The thing is, the SCD got me going, gave me the tools to learn about what I eat, and how it affects me. Also read Michael Pollen’s books! Everyone is different, but reducing stress really helped me. Natch, the docs say boo to that…but not so much lately! A good baturopath can help, too. Get into a good, healthy routine, and add some exercise (maybe yoga/meditation, too), and plus—you’ll model good things for your daughter! Hang in there.

    • Carol from Colorado
      CarolMay 20, 2012 at 8:12 am #

      If you don’t mind what is baturopath and what is the name of the book by Michael Pollen?

  5. moxieDecember 23, 2011 at 12:47 am #

    My story is quite similar to yours. I was diagnosed with Ulcerative Proctitis when I was 46. I’ve had a total of three flares since then. I was prescribed 5-ASA enemas the first time and that worked wonderfully, but decided to try the SCD the 2nd time. Improvement was dramatic and remission happened within a month. Unfortunately, after about a year I gradually went off the diet and then flared again. Back on the SCD and this time it took a few months before my symptoms were gone (I had to tweak the diet). You’ll find lots of information by referring to the SCD Lifestyle website.

    The diet is not always easy, especially at first. I used to lay awake at night feeling almost panicky about all the foods I would have to give up. But you soon get into the groove of it. I can almost compare it to exercise – It’s miserable at first, but then in some wierd way you sort of become addicted to it. I look forward to being in the kitchen and expanding my SCD repetoire. I eat better now and feel healthier than I ever did before.

    Good luck to you.

  6. George in NapaDecember 23, 2011 at 4:27 am #

    Hi Sophies Mom,
    I have proctitis also (sigmoid area). I was diagnosed 18 months ago, right after my 65th birthday.
    I started the SCD diet 12 weeks ago. I am showing only a slight improvement with my UC since starting the diet.
    My doc told me the same exact same thing that your’s told you….. diet was not my problem…. my UC is an
    auto-immune problem.
    Like your type, mine can, but usually does not spread upward, rather just stays in that area and is VERY stubborn
    in healing. I continue to do the diet for 2 reasons….. I am seeking long term remission and also want to do
    whatever I can to keep it from spreading upward. I think SCD diet may help me reach one or both of these goals.
    No doubt about it, this diet is a fair amount of work and a MAJOR lifestyle change….. but so is our disease.
    I am bouncing between 5 and 20 mg. per day of prednisone and also take 1500 mg of mesalamine per day (I was
    at 3000). I do not have a diarrhea problem but constipation can sometimes be an issue with me. I did the
    Canasa suppositories and mesalamine enemas for a while but they did not help me all that much…… yeah, STUBBORN is the right word to describe what I have. I keep trying different things and will continue to do so until I find something that
    works for me. One thing for sure….. I gotta get off this friggin prednisone…… the insomnia is driving me nuts.

    Like you, I very much enjoy being active and do not want to be disabled. I just want to feel good again.
    What works for someone else, may not work for you or I…… we gotta keep trying different stuff until we hit on
    the right combo.
    I agree with UC mama…… diet does matter.

    Best wishes,
    George in Napa

    • Carol from Colorado
      CarolMay 20, 2012 at 8:15 am #

      I had what you had and the it traveled upward eventually. I am not saying it will happen to you. My new doctor said no matter what you used as far as enemas the it can eventually travel and spread. Boy that was really nice to hear.

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