All About Carol

Introduction:

Hi- My name is Carol. I have been married for forty years ( I was a child bride)
and have three grown sons and on Grandson.  I have had Ulcerative Colitis for about 8 years and I am thoroughly disgusted. I wish I had a normal life!!!!

My Symptoms:

I run to the bathroom , passing blood, without stool. I tend to constipation, which is rare for this condition. With every flare up- at least twice a year, It takes longer to heal!!!!

My Story:

I am a sixty two year old woman, who has suffered with ulcerative colitis for about eight years now. When I have a flare, I try, Canasa, Rowasa, Lialda, and usually don’t respond well to any of these, so I am put on at least 60 milligrams of Cortisone, until the flare, subsides, and then I taper off. Last time it took me, eleven months, to taper off. I had “The moon face”” and my hair would start falling out. I am so discouraged. There are so few meds to treat this awful disease. I am also taking a pro-biotic, Folic Acid, and have restricted my diet- with hopes of feeling better.
My quality of life is so terrible when I am in a flare. I work out of the house, and am very weak due to all of the bleeding. I don’t want to quit my job, because at least I have something to look forward to- otherwise I would stay home and feel sorry for myself!!!
I was also told to try fish oil, which I am going to buy today.
I think the alternative methods for treating UC are probably better than the traditional ones.
There are so many other alternative methods that I have heard about.
Does anyone out there have any other current ways of treating your UC that you feel can help me?
Since having my UC flare ups, I have found that many of my friends don’t call me as often, because they don’t like hearing me complain, when I am sick, so much!! Of course my dearest friends, are worried about me, and they call.
My husband is very supportive, and feels bad for me.
I go for colonoscopies so often- I go twice a year. I hate the cleaning out part- especially, since I am bleeding.
I guess my biggest fear, is that the bleeding will be so severe, that someday I will have to call 911., and that my UC will turn cancerous !!!!!
Where I’d Like to be in 1 year:
UC Free!!!!!!!!!!!!!!!!
Colitis Medications:
I have been on Lialda, Azacol, Rowesa enemas, Canasa suppositories, Cort-Enemas, and the only thing that stops my bleeding is high doses of Prednisone- which have so many bad side effects- weight gain,”Moon Face, hair loss, and makes me very irritable!!!

written by Carol

submitted in the colitis venting area








4 Responses to All About Carol

  1. Bev June 6, 2012 at 1:40 pm #

    Carol,

    So sorry to hear about your flare. Aren’t they the worst times? We feel so helpless and hopeless, and just want to be normal, like other people. It’s 24 hour worry when we’re in a flare. It’s like it’s all we can think about…

    I have had UC for 13 years. I am 49 years old. I got tired of the meds that are prescribed for this disease, which all stopped working, eventually. I started a really good probiotic about four months ago, now, (CRITICALCARE by RENEWLIFE), which was recommended to me by the store clerk, when I told her that I have UC. It took a couple of months for it to really work, and then I slowly tapered off the 12 asacol pills that I was taking. I am on no drugs, now, just the probiotic. I don’t know why it worked for me, and so many other people say probiotics don’t help them. Maybe they don’t hang in there long enough to see the benefits? Also, I don’t know why on earth I didn’t take probiotics sooner. I will take them forevcer, now.

    I’m curious as to what triggers your flare ups? Do you knpow? Are you ever been on antibiotics before you have a flare? That’s what triggers my flares. Antibiotics. Like, a couple years ago, I had to take AVELOX, a strong antibitiotic, because I somehow got pneumonia. I had the WORST UC flare ever, after that, and I just got rid of it with the probiotic! The 12 asacol pills that I was taking were doing nothing. In fact, I started having even worse UC symptoms when my doctor upped the dose to that many, from the usual 6 pills that I was on for remission maintenance. 13 straight years of those pills, and then the doc wanted me to go on prednisone when the 12 pills did not stop the flare. That’s when I said NO WAY…no steroids…I’m going to try something natural…thus the probiotics. Like I said, they worked for me, one capsule per day, but it took a couple of months. Unlike medical drugs, probiotics do not work overnight. I think we expect them to work right away, but we have to be patient. How long have been on them?

    Cheers,
    Bev:)

  2. Phyllis Bovaird June 7, 2012 at 6:44 am #

    Carol, Have you tried drinking the Danactive Probiotice drinks? I have not been doing it lately, but I need to remember to purchase some at the grocery store. They are in the yogurt section. I like the blueberry and strawberry. I really think placing the good bacteria in the gut helps the problem. Also, do you take any aspirin based medication? I only take one .81 mg aspirin for my heart. I cannot take blood thinners of any kind because my problem started with taking a blood thinner about seven years ago. I can only take tylenol for pain.

    I personally think when you are in bad shape it is better to drink Ensure and let your colon rest and heal. Then start back on bland foods. I am not a doctor, but I know your pain and anguish with this condition. If anything I place on this website helps, it will be worth it to me. I am like you “no prednisone”!

  3. Lea June 7, 2012 at 9:16 am #

    I know how you feel about the prednisone, imagine going through middle school with the moon face and symptoms you had to somehow hide, yup that was me. I am doing great right now on the diet from the book Self Healing Colitis and Crohns. I won’t lie, the first days were rough, (detox and cleansing) but I would do (almost) anything to get rid of the 3 month constant D flare I was experiencing. Hope you are not too woo-woo-ed out by the natural approach, but I’ve tried much wilder on the woo-woo side, and I wish I could tell ya more about that too, but I had no idea how it worked myself! Woo! If you are looking for supplementation instead my Naturopath recommended GastroCort (anyone try this long-term with good results?) Another idea, I recently read of an amazing study on Ulcerative colitis and phosphatidylcholine (a component of lecithin) in the gut

    “What goes wrong in ulcerative colitis

    Digesting, fermenting food and the bacteria that go with it are highly irritant to the gut wall. Indeed, faeces are very irritant generally – one gram of faeces contains a trillion bacteria and if you stuck some onto your skin, then that area of skin would become ulcerated. We protect the lining of our gut with a mucous covering. This is a barrier between the gut wall and its contents. Mucus combines with bile acids, which act as a detergent so the contents of the small intestine are almost foamy. In the last section of the small intestine bile acids are removed, leaving phosphatidylcholine (PC), which sticks avidly to mucus that lines the gut. This has a lubricant and energy delivering action. Phosphatidylcholine is actively secreted into the small intestine but not the large intestine. Here it is gradually broken down by gut bacteria as it travels down the large bowel and indeed the rectum is the last area of supply for PC.

    Research shows that lack of phosphatidylcholine (PC) is the problem

    Dr W. Stremmel, a German physician, has done research that shows how ulcerative colitis is associated with a lack of PC in the lining of the large intestine, so there is no longer an effective barrier between the wall of the large bowel and the faeces. Ulcerative colitis patients had 70% less PC in rectal mucus compared to healthy controls (and interestingly Crohn’s disease patients). Stremmel hypothesises that lack of PC in large bowel mucus is a key pathogenic factor in ulcerative colitis.

    This may well explain why ulcerative colitis always starts in the rectum (where PC is lowest) and moves up to the rest of the large bowel. The small intestine is never affected because this secretes PC. These patients have consistently low levels of PC because it is reduced more than 70% in the rectal mucus. The mucus becomes thin, faeces come into direct contact with the gut wall and this causes ulceration.

    Treatment with PC works well

    Dr Stremmel has developed a slow release form of PC, combined with bile acids which he has called Endragil 500. This supplies slow release PC which becomes available in the large bowel. In a trial of patients with ulcerative colitis who were given 4 x 500mg of this product daily, the PC in the rectum normalised, 27/30 experienced high rate improvement or complete remission, the response to therapy began within four weeks and continued to twelve weeks. See

    There is clearly a relationship between ulcerative colitis and gut flora because we know that in many cases of ulcerative colitis bacteroides are not present. Dr Stremmel hypothesises that bacteria in the gut progressively destroy phospholipids in the mucus and it is only bacteroides, the major friendly bacteria in the gut, that does not. Indeed, bacteroides produce butyric acid, which nourishes the gut wall directly and is markedly anti-inflammatory.

    Endragil 500 is not yet available on the market. It should become available in 2012. Taking lecithin by mouth would not do the job simply because it is digested and absorbed. I suggested to Dr Stremmel that lecithin be given per rectum, possibly emulsified with bile acid and his comment was that this should work fine so long as there was not such severe diarrhoea that this could not be retained. Another possibility would be to use PC in colonic irrigation fluid. This is certainly something that could be easily tried with minimal potential for harm.”

    My healing book discourages enemas and supplements, but the odds for this one are too great not to share, I’ve seen multiple references to this study and I hope it helps somebody, please share results! http://www.drmyhill.co.uk/wiki/Ulcerative_colitis_and_phosphatidylcholine_(PC)_in_the_gut
    http://www.biomedcentral.com/1471-230X/9/53/abstract
    http://www.needs.com/product/NDNL-0801-03/l_Phosphatidyl_Choline

  4. Charlotte April 1, 2014 at 1:30 pm #

    Dr Myhill also talks about dietary and other approaches to dealing with fermenting in the upper gut. If levels of bacteroides are low (this can be tested for) then you can get levels up from donor poo, see the work being done at the Taymount Clinic in the UK. I’m not sure if this treatment is available elsewhere but my sister, who suffers terribly with UC is going there. It has made her life an absolute misery and I really wish you all a full recovery.

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No matter what, colitis flares don't last forever, don't forget it:)