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Does SCD Work? – My Daughter Has Colitis

Introduction:

My daughter just turned 18 and she has Ulcerative Colitis. We live in Vandalia Ohio – just north of Dayton. Emily is a bright young person who has seen her life change drastically due to this disease.

Some more about my daughter:

Emily loves to read, enjoys video games and hanging out with her friends.

Symptoms:

Emily has cramping in her colon, extreme fatigue, and joint pain.

Does SCD Work?

Emily was diagnosed in March of 2012. A scope confirmed the presence of UC. She was put on Prednisone and her symptoms subsided for a few months. Of course the side effects were awful. In October of 2012 the Prednisone was replaced with Immuran. A scope in late 2012 revealed that the ulcers were healed but she continued to have some cramping, nausea, skin rashes, joint pain, and extreme fatigue. In addition to the Immuran, Emily also takes Methadone, Vicadine (occasionally), Lirica for pain.

Emily was an A student in the local public high school at the time of her diagnosis. She had to stop going to school due to the disease, tried an online school, and finally had to drop out. The constant pain and fatigue are more than she can bare. She has become bitter, depressed, and feels hopeless. She is treated for depression and is in counseling but is making no progress.

Emily complains daily of the fatigue which she describes as being very much like the complete energy depletion athletes describe as “bonking”. We assume that is do to the malabsorption that we have read about.

As her parents, we have decided to put Emily on the SCD diet. We have read “Breaking the Vicious Cycle: Intestinal Health Through Diet” and it makes sense to us. Currently we are preparing to have her go on the diet by collecting recipes and have decided to hire a chef for her to make sure all foods are properly prepared and available.

Although the diet makes sense to us, it has never been recommended to us.

Emily has seen three different GI specialist and not only did none of them mention the SCD diet, we were told by all three that diet was not an issue. That makes us wonder of course if the diet really works. Why would the medical profession ignore a treatment that is effective as the SCD diet is advertised to be?

At this point we plan to go ahead with the diet and hope for the best. We really have nothing to lose. Emily’s condition seems to get worse by the day and we are getting no new ideas from the medical profession.

Medications:

Prednisone – effective but terrible side effects.
Immuran – has kept the UC at bay – she has no diarrhea or bleeding but continues to have all the other UC symptoms including fatigue, nausea, skin rashes, joint pain etc.

written by Tom (Emily’s Dad)

submitted in the colitis venting area

Here is the book Tom is referring to:





8 Responses to “Does SCD Work? – My Daughter Has Colitis”

  1. AdamAugust 18, 2013 at 4:04 am #

    Hi Tom,

    You ask a question that’s been asked many upon many times before. Actually you ask several questions that have been asked since the beginning of time (or at least since I started this website).

    Does the SCD diet work?

    It works for some people, not for everyone. I believe there are many reasons for this, and only after trying the diet is it possible to really understand those reasons. But, a few clues as to why “it” doesn’t work can be the following: poor adherence to the rules of the diet, misunderstandings on how quickly positive changes can start to occur – leading to stopping before any positive changes had a chance to take effect, and for other people the diet simply does not work or solve any problems when used properly and that of course is very unfortunate as is the case with people using medications which do not work for them.

    Why have your doctors/specialists/best GI doctors around not give this type of treatment any piece of mind…?

    Again, another question that has been asked by many a parents on this site since I can’t even remember…

    Answer(s)…
    -Research is not up to their standards (doctors are interested often in PubMed type research and listen/react to that type of stuff (to their credit, that’s probably a smart move on their part), but the reality is that there are certain types of groups sometimes called organizations other times called massive corporations who are very heavily involved if not directly involved who help control/decide which type of research becomes funded
    -It is VERY difficult to create a scientifically controlled study based on diet and the outcomes of certain diets. VERY difficult to control (and that is very unfortunate)

    You may or may not know this, but I myself have followed the SCD diet for over 4 years now. It wasn’t until 1 year after my diagnosis that I jumped on the bandwagon. Why did I wait so long????

    You guessed it, same reason as you guys. All my GI doctors/ “best GI doctors around” from Stanford Univeristy, UCSF, Palo Alto Medical Foundation and can you believe it… the Mayo Clinic in Scottsdale Arizona…
    ALL SAID food, diet, whatever you want to call it had absolutely nothing to do with my disease, symptoms etc… That’ why I waited.

    But, like so so many folks, I was getting ready for surgery, met a girl through a family member who also had UC. She too tried all the medications as me. But the main difference was she was not 5 foot 9 (and a half) weighing 129 pounds like I was. She was 5 foot whatever looking perfectly normal and just finished a half marathon the week before, and was medication free.

    Yes, you guessed it, she was using diet, and the SCD diet to treat her UC and had been for several years with success.

    The recommended treatments had failed me at that point (pred, remicade, humira, etc…several others) and I had a few choices left. Listen to the girl I didn’t know who knew all about UC and try some freaky diet…. or listen to my doctors and get signed up for surgery.

    You can guess what choice I made. AND, you can guess the look on my face when my GI told me “the medications must have finally kicked in” even though I had been medication free for over 4 months and back to no symptoms… I had to laugh that off (actually I was kinda ticked that good old doc still gave diet no credit and soon found another GI who I love)

    OK, long story short, Diet does NOT work for everyone, but there’s quite a few of us where it does.

    I’m medication free, taking 1 hard crap a day, sometimes I even skip a day but not much, and feeling better than I have in a LONG time. And you know what, for over a month now I’ve been doing non-SCD stuff like tortilla chips and potato freely and even getting back to an old (6 year ago habit) of sneaking in a few whiskey’s on the rocks.

    best of luck to you and most importantly your daughter Emily (damn I haven’t got a rant off in a while but my wife’s still asleep:)

    -Adam

  2. JoannaAugust 18, 2013 at 6:55 am #

    I would give scd a shot! Emily has nothing to lose at this point besides her colon! Ive just celebrated my one year anniversary on scd! Granted, it hasnt done a thing for my ulcerative colitis, but it has made me physically stronger. I wish i was one of the ones who had a miracle turn around, but i was just in the hospital for a week this month. Cat scan showed severe inflammation and backwash ileitis.

    I got used to eating meat though since i was a five yr vegan before i started scd. I make great recipes and never get bored with the food.

  3. Trevor WAugust 18, 2013 at 10:21 am #

    Answer: YES

  4. LeslieAugust 21, 2013 at 7:31 am #

    Hi Emily’s Dad! I’m in Fairborn, and I have UC. I’m on Pred, Imuran, and Apriso right now. I was diagnosed at 19, and I remember feeling hopeless, too. It’s a hard age, and finding out you have an incurable disease that makes you go to the bathroom all the time does NOT help. Bless you for doing all you are doing for her. If she (or you) would ever like to have a chat with me about my UC experiences, I would be open to it.

    • TomAugust 21, 2013 at 10:38 am #

      Thanks Leslie. I’ll talk to Emily about chatting with you. I’m sure she’ll be open to it. Have you tried any non- medication treatments like diet – more specifically the SCD?

      • LeslieAugust 22, 2013 at 8:30 am #

        I have not tried the SCD, although that may be my next step. I have gone gluten-free in the past, but it didn’t help my symptoms, although I know it has helped others…I think that would also be good to try. (it was also not as difficult to do as I had thought it would be!) I think there is also something to be said for sticking with non-GMO food, although I haven’t tried that route. Yet.

        Feel free to email me directly, at lesliescoleman at gmail.

        • TomAugust 22, 2013 at 2:29 pm #

          Leslie: We have a friend who is a retired chef. She was the founder of a very successful local restaurant and has now turned it over to her son. She has agreed to prepare meals for Emily in accordance with the SCD and in turn teach my wife and Emily how to do so. Our belief is that by having her do that we will have a much better chance of staying on the diet and therefore increase our chance of success.
          While discussing this concept with our friend she indicated that if in fact this works she may be willing to help others who are also suffering. You live in the same area that we do so if you ever want to discuss the possibility of having our friend help you with the diet let us know and we can make those arrangements.

  5. GailAugust 22, 2013 at 6:11 am #

    Hi Emily’s Dad,
    I hope you saw Polly’s reply to Holly (Another wedding …). She writes about her good success with diet. I feel the same as her, that gluten may be a problem for a lot of people and it is in almost everything these days. Dairy can be a real problem too. If possible, I think food intolerance testing is worthwhile. Good for you for trying to help your daughter. If you can get this under control with diet and natural products, she’ll be fine and even much healthier.

    Please do keep educating yourself about food and nutrition. The time consuming part is reading labels! It can be shocking what’s in our food – the chemicals, colours, preservatives, etc. Like Polly, I also eat non-gmo, fresh organic food as much as possible. No dairy, gluten, white sugar. I had issues other than uc but have family members with uc and other auto-immune conditions. I TOTALLY believe in diet.

    Good luck to you and your daughter.

    Gail

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