Ulcerative Colitis Tips


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No Control

running in Arizona Rock and Roll marathon

I want to be finally running that marathon!

Meet Heather:

Diagnosed 1 year and 3 months with Ulcerative Colitis but also battling C-Diff along with it. Never had any GI issues until I had a colonoscopy in July of 2011 so they are still unsure if I got it due to the colonoscopy or the C diff or how it all came about. I have battled C diff Kidney Stones and UC and finally started Remicade.

Colitis Symptoms:

Some pain on the left side but my medications helps with that. Down from 10-12 bowel movements a day and that has been for a solid year to 1-2 times a day which is a n amazing relief. Still urgency which I think is getting worse instead of better.

Colitis Story:

I was diagnosed 1 year and 3 months ago with UC but also battling C-Diff along with it. It all started in July of 2011 when I went in for a colonoscopy to check a few things out and everything went wrong from there. I had NEVER had any GI issues or stomach problems and I was there due to a small pain in my rectal area. I wanted to run a full marathon for my 40th birthday so training needed to start and I was on top of it. They said colonoscopy so I was on it. Little did I know it would change my life FOREVER.

Long story short, I was having issues after the procedure and after months and months of being deathly ill and getting the run around from the doctors I had multiple conoloscpoies, hospital visits, kidney stones removed, and a few different doctors telling me I had UC and to just take prednisone for a year so I finally hit my breaking point.

I got fed up and went to the Mayo Clinic where they discovered I had C diff. I started treatment and as of today I for sure have UC but the C diff keeps coming back as well never giving me a complete break. I am on my 2nd round of it now and I often wonder did I get the C diff from the original procedure which caused the UC?? I am sure a question that will never to be answered…

As of now I am on Remicade after trying Humira which it did not even touch my UC. Remicade didn’t really start working until the 4th infusion and now I am down from 10-12 bowel movements a day to 1-3x a day. I am also on 25mg of prednisone trying to taper off. It is an amazing relief but I am still not at 100%.

I wonder will I ever reach that goal?

I have tried diets and nothing seems to matter with the exception of how much I eat at one time. I feel better the less I eat and I do have about an hour out of my day that it takes me to “clear out my bowels”. My biggest issue to date it the urgency. I have about 30 seconds to make it to the bathroom and I can’t figure out why that is still such an issue. I have 3 kids with car pools and no indication that I may have to go. I have had more accidents in the last 6 days then all the year battling this.

Why is it getting worse?

I do anucort suppositories at night hoping to keep down the inflammation but it doesn’t seem to help. Are there any suggestions and will maybe the 5th infusion help with this? Is there so much damage from the last year that my rectum is broken? Any advice will help….I am so thankful for Remicade and I do hope with each infusion I can get a little bit better.

Where I’d like to be in 1 year:

100% remission finally running that marathon…

Colitis Medications:

Prednisone 25 mg tapering
Anucort
Balsalazide 750 mg 3x a day
Vancomycin
Florastor
Calcium

written by Heather




c-diff

4 Responses to No Control

  1. Adam
    Adam Scheuer October 24, 2012 at 9:30 pm #

    Heather,

    I wanted to send you some links with regards to C-diff.

    There has been lots of talk in the scientific community lately (actually its been going on for quite a few years but has recently began to gain some serious steam) with regards to fecal transplants and C-diff. Maybe you have already read into this, or maybe your doctors have already mentioned the ideas to you, but this reading might help you out.

    Here is a link to a Scandinavian study on the topic titled:
    “Fecal transplant against relapsing Clostridium difficile-associated diarrhea in 32 patients.”

    http://www.ncbi.nlm.nih.gov/pubmed/22468996

    Also,

    This is another study on a similar topic, and actually one of the doctors on this study is my current GI doc (Dr. Neil Stollman) who told me he has seen an aproximate 90% success rate with fecal transplants for treating C-diff. here’s that link: http://www.ncbi.nlm.nih.gov/pubmed/22450732

    I wish you the very best, and would be super cool to meet up with you in Vegas someday for the CCFA half marathon…or I guess you can do the full one if you really want:)

    -Adam

  2. Lisa OH
    Lisa October 25, 2012 at 6:57 am #

    Hi Heather. Your story is similar to mine. I’m sure it’s on here somewhere, but long story short, I’m a runner with no history of gastric issues, UC came on out of nowhere in Dec. 2011, 6 weeks after running Columbus Marathon. No meds worked, I was on Asacol, Mesalamine suppositories, prednisone, canasa, Remecaid. Got Cdiff, was put on Vacomycin which didn’t work, was hospitalized and got Flagyl IV while continuing w/oral vacomycin – that eventually made Cdiff go away. However, my colon became toxic & I had to have colectomy (currently waiting for 3rd surgery in 3-step jpouch surgery). However, btw 1st & 2nd surgeries, I got Cdiff AGAIN in the small bowel, the inflammation from which was causing a partial obstruction, so back to the hospital I went for more flagyl & vacomycin. Poor me. Anyhow, if I had all the AWESOME info I’ve been getting from this site back in December, I would NOT have listened to the docs who told me diet has nothing to do with it and have done the following:

    1. Start the SCD diet religiously, which you have to do or it will not work. Cheating sets you back big time.
    2. Take probiotics (a good strong one VSL#3 is prescription, seems to work for alot of people), or one that has 50billion+.
    3. Get a fecal transplant

    Hope you reach remission soon!!

    Lisa

  3. bev October 25, 2012 at 5:47 pm #

    Heather…I second what Lisa above says. Probiotics first and forever, above all else!!

    Good luck:)

  4. claudia anderson October 26, 2012 at 9:45 am #

    Hi Heather~
    The probiotic “Flora-Stor”(saccharomyces boulardii) works to keep C-diff under control. You can now buy it at a Costco pharmacy where it is cheaper than say, Walgreens. You may have to ask them to carry it for you. I would add it to your other lactobacillis-type probiotic–they will be key to helping you recover along with the SCDiet! Wish you success..
    Claudia

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