Ulcerative Colitis Tips


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Not All with UC are Young, Y’know

82 yr colitisIntro:

Retired (VERY retired: 82 and counting) living in Washington State. Don’t know how long I’ve actually had this problem but was first diagnosed about 10 years ago, put on eight sulfasalazine a day, promptly reduced by me to four, and just last month dropped altogether.

Symptoms:

Query: Am I the only older-than-dirt UC person on your list?

Yes, I have symptoms, but due to recent change in dealing with it, they seem to change from day to day.

My Story:

Bleeding a bit is what originally prompted me to have this looked into — pun intended. Prior to that day, I’d never known anyone with this condition and I knew precisely nothing about it. I learned, fairly quickly, I didn’t want it; I learned, also fairly quickly, want it or not……

I’m really not a slow learner, just tend as most of my generation do to follow my doctor’s advice, within reason. That last proviso was tested very early on when the high dosage of sulfasalazine so permeated me, I could actually sniff out a trace of it on my skin. I cut the dosage in half, and everything seemed to stay the same.

Still, years went by and frankly, I couldn’t see any improvement in any respect. Flares were common, and often severe ones at that. I used to play duplicate bridge twice a week in the mornings, and I finally had to quit that altogether; there were entirely too many mornings when I could NOT get more than 15 feet from the nearest loo, and sudden urges would double me up every 20 minutes or so for hours. Very competitive bridge players tend to frown on people who throw down their hands, apologize, and scramble from the room over and over.

tippy the dog

Jean's Dog

Other than a happy and enthusiastic 10-year-old dog, I am alone now. I lost my husband of 54 years just two years ago, and what other family I have are out of state. Happily, that’s fine — love the dog, love my Maingear Shift computer, my Kindle Fire, my music (classic, please), my friends, my part of the world, and I’m quite content.

The changes I made to my routine last month are, as follows: No more sulfasalazine. Turns out it had apparently helped my osteo-arthritis, which I’ve noticed, but apparently it had another effect which I never dreamed about. Truly, I feel so much better than I did just a few months ago, I was shocked. The med simply must have had a draining or debilitating affect that wore off within days of stopping it.

Next, I drink a few ounces of organic aloe vera juice (heard about first on this website), and to my regular vitamin regimen I’ve added probiotics three times a day. Now and then, not regularly, I add an Immodium or equivalent, but only when cramping is persistent.

I’m also keeping sort of a diary to note morning where I note a tiny spot of bleeding again, days I have diarrhea, I had to take the Immodium, etc.

Where I’d Like to be in 1 year:

It would be nice to be able to travel again, just a bit. I don’t imagine I have all that many years left to, say, go on a cruise. And maybe one more time I’d like to go back to my home town of Denver and visit some of the friends I still have there, after all these years.

written by: Jean

submitted in the Colitis Venting Area




6 Responses to Not All with UC are Young, Y’know

  1. Hannah May 29, 2012 at 5:51 am #

    Hi Jean,
    Sorry to hear that you had to join the “UC club”. It is quite life altering -especially if you led a pretty healthy life before UC. I was diagnosed at the age of 10 (now 47) but really had symptoms for almost a year before I almost died. Back in 1965, the only other person I knew of who had been recently diagnosed with UC, was my aunt, and she was 72 at the time. So no, its not uncommon to develop in the later years.
    I wish you remission (which is where I am right now thanks to Humira) and hopefully you will take that cruise!
    all the best
    Hannah

  2. Bev May 29, 2012 at 6:39 am #

    Hi Jean,

    I am elated that you are taking probiotics! They are the only thing that has ever really helped me, as well. I finally stopped the asacol that I was taking for 13 years stright, and just like you, I felt 100% better! That drug must have been dragging me down, as well as making me nauseated all the time. What a way to live…but I got so used to it, and I guess I didn’t realize what it was doing to me. It stopped helping with the UC as well. In fact, I started bleeding more, and getting worse pain and cramping. Going to the bathroom more. I suppose the meds can work for a while, but they always seem to stop working at some point, with this disease.

    I really wish and hope that more UC sufferers will take probiotics, and hang in there for a couple of months so that they can start to actually work. Like I’ve said on here before…I think some people bail out to soon, when they don’t see immediate results from them. It does not happen overnight.

    Thanks for telling us your story. You sound like a wonderful gal!

    Cheers,
    Bev:)

  3. Senga Taylor May 29, 2012 at 7:41 am #

    Hello there Jean, I just want to thank you for writing to us all the other day! I love this site and I read almost everything. You story caught my eye and I loge the photo of you and of your cute little dog! I live in Borneo and I have lived there for about 2 and a half years. my daughter has been diagnosed with colitis, but she bleeds when she poos and she always has a lot of mucus. She has had no pain yet but complains of nausea. I really feel helpless, but I am trying my best to delay her getting worse. I am so afraid she will get worse and that breaks my heart. Since Christmas I have been trying to follow the Specific Carbohydrate Diet and recently put her on VSL#3 2 capsules daily but still bleeding so last week put her up to 4 capsules. She is complaining of nausea not sure if it’s the increase in probiotics? Who knows but she does complain of nausea from time to time. Anyway I admire you very much and I am so glad you wrote your story. I hope to hear more!! Thank you. Senga

    • Cian August 16, 2012 at 5:41 pm #

      Sorry to hear your suffering.

      Try cutting out dairy foods,(take calcium supplements) cut out esp milk and purchase dairy free butter; drink camomile, peppermint; purchase from holland and barrots, Slippery Elm. Drink lots of hot cold drink. Dietry is very important to follow. If not certain seek GP advise for dietician refferal. Hope some of this helps or all.

  4. Wendy
    Wendy May 29, 2012 at 10:13 am #

    I felt the same way after trying to take the drugs the doctors suggested. I feel so much better. My joints hurt, especially in my hands, but they hurt much much more when I have mesalemine or Asacol in my system. I also NEVER want to take steroids again, however, I may have to. Thanks for posting.

    Wendy

  5. Jean
    Jean Hohnstein July 23, 2012 at 11:05 pm #

    Just thought I’d leave an update here. So far, very much so good. Haven’t had a sulfasalazine since I originally posted this, but drink my two or so ounces of aloe vera juice every morning, take a minimum of two probiotics per day. Had some bleeding for the first couple of weeks, and absolutely none since then. Had an occasional flare for a while and none for about a month now. Very infrequent diarrhea, and that a single spasm rather than all morning.

    I’ve noticed my arthritis is worse, and to my surprise learned that the meds I dropped do have a palliative affect on arthritis. So be it; rather endure joint aches than living in the loo, any day!

    I’ve also noticed a mood change for the better. I have no reason to suspect that the meds actually had a slight depressive tendency, but I do suspect that. Could well be, of course, the fact I’m not “living in the loo” is the real reason I’m more cheerful.

    This obviously isn’t a cure, nor do I expect one. But since I’m much to old to be interested in surgical intervention, I wanted to try something else, and I did. Can’t answer for whether or not it would work for all your kind souls who commented about my original whine, but don’t think it could hurt you, either, to try some aloe vera juice and probiotics.

    Good luck!

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