Looking For More

Hi, I am a 37 yr old mother of 2, (6 and 3yr olds), work full time,

and was diagnosed with Ulcerative Colitis in 2005.

I have had 2 major flare up within the last 6 months, (July 2011-Dec 2011)as well as a clostridium difficille infection on top of my latest flare in Nov. 2011. All of which I have been hospitalized for 5-6 days for! These were all diagnosed with a sigmoidoscopy, not fun!

I am really interested in the SCD diet.

Any information would be greatly appreciated as I can’t live with the cramps, 15-20 bloody mucousy diarrhea anymore. I am currently on prednisone 30mg per day, mesevant 4.8 mg per day, vancomycin (antibiotic), vitamin D, calcium, probiotics, omega 3. My electrolytes and some blood work are out of whack indicating I am malnourished. I have lost about 8-10 lbs this episode and am at the lowest weight I have been, even before I had kids. I am worried about getting enough nutrition on the SCD at the beginning, and am not sure how fast to introduce other foods on the legal list into my diet. I have been trying to keep a journal as well. I have no idea why I flared up and keep blaming myself that it was something I ate or drank or something. I am tired of feeling guilty. I have a very supportive husband who is willing to support me in any diet or regime I decide and for that I am extremely thankful! There is also very conflicting data from the doctors and from the actual end users of the diet. Both my doctor and dietician told me not to go on this diet, but I don’t know what else to do, and I have to try something different, because my old ways aren’t helping me. I am tired, frustrated and confused, thanks for listening!

Colitis Medications:

Prednisone works, especially IV, but the oral doses take a while to kick in. I don’t think mesavant is doing anything for me but my doctor says it lessens the chance of colon cancer in the future. I hate the side effects of prednisone, bitchy, can’t sleep and everything else.
written by Darolyn
submitted in the colitis venting area

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4 Responses to Looking For More

  1. Sher December 17, 2011 at 9:38 pm #

    Darolyn,

    The first thing you need to do is stop blaming yourself! I blamed myself for years (diagnosed 12 yrs ago)… I was on antibiotics for acne when my UC started. I told myself “why did you have to be so vain?!”, it caused me a lifetime of pain. I now realize that I may have gotten it anyways down the road. About 4 years ago I also got H-pylori, I’m not sure if that is close to C-diff or not, but the antibiotics made me soooo sick! I’ve been on just about every medication for UC, some worked for a little bit, some not at all. I made a choice to stay away from prednisone, I was on it for a very long time. The side effects were killer to me. I got migraines the last time I was on them (a year ago), that didn’t go away for 6 months! Even after stopping it. Recently I read that UC is close to celiacs, I also read that trying a gluten free diet would eliminate blood in the stool. I thought what the heck and tried it. It helps a lot and I noticed with in about a week I didn’t see any blood… you may want to give it a shot. I googled gluten free and also found a section in the grocery store with those items. It hasn’t completely cured me, but it has helped with the tummy troubles. I haven’t tried the SCD diet yet, but I think it has some similarities to gluten free diet. Hang in there, it helps to know others know what you are going through… I’m glad we have this site to vent.

    Take Care, Sher

  2. Rebeka
    Rebeka December 18, 2011 at 4:28 pm #

    Hey Darolyn!
    How long will you be on the antibiotics? Usually when I’m done with them there is an improvment rightaway. Then, the probiotics help better too.
    My doc prescribed dicyclomine against cramping (they also give it to IBS people). I don’t know how strong it was, but it helped and it didn’t make me feel fuzzy. I was also taking valerian root (all natural and no side effects but it stinks) while I was on prednisone to help me sleep.
    Back then I didn’t start with the SCD because I was also losing a lot of weight and I wanted to keep eating a variety of foods. Just no raw vegetables, nothing greasy, sugarry or spicy, and only minimally processed. I guess at first it was a low (to no) gluten diet. Now I’m trying to eat about five times a day, cooking everything myself (lots of chicken- you’ll need the protein), and eat anything anti-inflammatory (like adding a bunch of ginger and/or garlic for example).
    I hope you find something that helps you get out of this flare soon and that you can enjoy your holidays!

    • darolyn December 19, 2011 at 2:45 pm #

      Thanks for the info and words of encouragement! I have been on the vanco for 2 weeks so far, and 2 more to go. I will try the valerian root to sleep, and add more ginger! And I will ask the dr about the dicyclomine. Thanks for the tips!

  3. George in Napa December 19, 2011 at 3:43 pm #

    Hi Darolyn,
    You mentioned that your doctor and dietician do not want you to do the SCD diet. Did they say why? Maybe its because of concerns for your weight loss.
    I started the SCD diet 12 weeks ago. i did not tell my doctor that I was going to do it. All I told him was that I was not going to take 6mp and that I was going to try some alternative remedies. I lost ten pounds in 11 weeks on SCD that I could not afford to lose. I and still doing SCS and I slowly am starting to gain a little weight back because of the smoothies that I have been drinking.

    SCD has not put me in remission the way that I hoped that it would. i think that my flares are a little less severe and I seem to have more energy since I’ve been on SCD. I keep adjusting the amount of prednisone that I take according to how bad my proctitis flare is. I’m trying to get off the stuff but seem to be bouncing between 5 and 15 mg per day.
    With this UC disease, what works for your personally, sometimes makes someone else feel like crap.
    We all gotta keep on trying different stuff until we find what works best for our individual problem.
    After seeing Adam’s interview with Alice from Ottawa, i am considering trying Ayurvedic medicine. Hey, why not, nothing else seems to be working.

    I think Sher and Rebeka gave you some good input.
    Hang in there. I WILL get better.
    Best wishes for a Happy Holiday Season!

    George in Napa

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