Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

A Veteran of UC, But Seem To Be Losing The War

Introduction:

Hi all, my names Thomas and I’m a 6 year vet of UC with no Meds helping me out.

What’s Happening With My Colitis:

Hi all. Like I stated in my intro, I’m 6 years deep with Ulcerative Colitis, I’ve tried a bunch of medications and none of them work. Currently, I am taking 15 mg of prednisone. Have been on it for about 3 years now. It seems to work when the dosage is high, but because of the bad long term affects, I am unable to stay at a high dosage. Being on 15 mg really isn’t doing much good (not keeping me in remission). So after 3 trips to the hospital over the past few years, 2 of those trips resulting in me having pancreatitis due to medication, and my specialist now having run out of options in terms of medical treatment, he has given me the option of surgery. I was totally against it but after loooooong consideration, I realized I have absolutely no other choice.

If I want any sort of life I need this surgery.

So April 11th is the day and as much as I tell myself I am ready for it, I know when the time comes I will be super scared, anxious, and nervous and will probably not w ant to end up doing it. I recently payed a visit to my specialist and he came to me with this last resort option before surgery. An Anti-biotic by the name of Vancomycin. Has anybody used this for UC and it actually worked? He told me the only downside of this med is its price, as I do not have any sort of insurance coverage due to the fact I am unable to work because of my UC. So besides the price being steep, I am just wondering will this be something that can be used long term? Or is it just to get my health up so I can go into surgery healthy?

If anybody has any feedback I will love to hear it as I need as much reassurance about having this surgery as I have never even broken a bone in my body, so to meĀ  it’s a pretty big deal.

Medications:

Only medication that has given me any sort of improvement has been Prednisone 35 mg and up. Anything below that, things tend to slip away.
Thanks all for taking the time to read my story.

 

Thomas

submitted in the colitis venting area

 

 




Vancomycin

7 Responses to A Veteran of UC, But Seem To Be Losing The War

  1. JamieIsLame
    JamieIsLame November 28, 2011 at 8:05 pm #

    a six year vet of UC and still fighting, I have to say, stories like this kinda make me sad!
    i’m sorry you’ve having such rotten luck, but from what i’ve heard, Vancomycin is supposed to be extremely effective in the treatment of severe colitis (or so my IBD specialst nurse told me) the only downside is the price and that it has to be infused.

    I’m glad to hear you’re going to go ahead and get the surgery! 6 years is a long time to struggle with this horrible disease, and I think i’ll be getting the surgery long before then!

    I hope things start looking up soon! and hopefully you’ll be able to get insurance sorted before your surgery, because that’s sure gonna cost you both your arms and maybe a leg.

    • Thomas December 5, 2011 at 3:02 pm #

      Hello :)

      Actually this method of Vanco is taken orally believe it or not. So although I do have my surgery booked for April I am hoping and praying that this last resort of treatment with the vanco works.
      Cross your fingers for me :)
      Thanks for the comment, very much appreciated.

  2. uma November 29, 2011 at 7:30 pm #

    Are you saying that in six years you never went into remission even once. Thats strange. May be you must change your

    doctor and see. There are several lines of treatment. Dont go in for the surgery before trying all other options. Good luck.

    • Thomas December 5, 2011 at 3:00 pm #

      Hi Uma,

      No no, I have been in remission many times but it’s never for a long period of time. Over the 6 years it has been an up and down roller coaster. Just this past year has been much more down than up. And believe me, I have tried many forms of treatments. The only one that has shown any signs of improvement has been prednisone.

  3. Trish November 30, 2011 at 1:47 am #

    I’m so sorry to hear you’re so poorly. Vancomycin, as far as I understand, is used mainly for pseudomembranous colitis caused by clostrium difficile – I don’t know anything about its use in UC, though the two conditions do share symptoms and can be mistaken for one another. Have you been down the Asacol/Pentasa/Endocort route that so many others on this forum have tried, and have you tried the SCD? There is no problem in being on the SCD while simultaneously taking medication, so I would start that straight away if you’re not on it already – if you have brisk diahorrhea, the SCD starter chicken soup can knock that on the head very quickly. If you decide on the surgery, from what I understand, it can be an absolute new lease of life for many people, though again I’m sorry that you have to make a financial calculation on this: I am British but live in France, so we don’t have to pay for our healthcare and I can’t imagine how worrying it is to have to think about that on top of everything else. Very good luck with whatever you decide to do. :) Trish

  4. april December 1, 2011 at 3:58 am #

    hi!
    Im so sorry to hear that things arent looking up! But i was wondering if you had ever tried remicade before. I am steroid dependent and every time i go off steroids i begin to have a flare up. I finally tried remicade and it seems to be doing the job:). It also is an infusion but its not that bad at all. I go in every 8 weeks and sit there from 3 to 4 hours and get the medicine run through me. It works very well though! The one thing i took before remicade that also got me into remission is cyclosporine. Cyclosporine is mainly used for transplant patients but it put me into control fast and gave me a clean looking colon! I was symptom free for a year. I would have stayed on that drug but unfortunatley you can not use it long term. I also take a probiotic everyday and it helps so much. I cant stress how much it has helped me. The probiotic i take is VSL3 and it is designed for UC specifcly. I hope i was able to help you a bit. I also hope you get better:). im sure things will start looking up soon. Good Luck to you!!

  5. tia September 2, 2016 at 2:55 am #

    hey thomas, i have just started taking vancomycin i’m not entirely sure whats its supposed to do or even if someone with uc is supposed to take it but never the less i do what i am told…so far am not liking being on them they make me nauseas, dizzy and lightheaded….tummy is alot sorer but that cold be cause i am in a flare…. i am told the medication works different on everyone.. maybe i am just unlucky lol.

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