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Any Advice, I’m Starting the SCD Diet

Background:

Although I was diagnosed at 25 (23 years ago), I have had less than 5 flares all of which have been managed and cleared with sulfasalazine (oral) and asacol (enema). Until now. I am well into the second month of a particularly nasty flare, and am getting NO relief from medication. I was hesitant to consult my gastro, because I do not tolerate steroids well, and know that they will be his next line of treatment. Alas, I am finally going to see him on Tuesday because I cannot function with this little energy any longer.

Story:

I am hopeful that my gastro will agree to a trial with cortaid enema and sulfasalazine orally. Has anyone had success on this? Also, what is the likelihood that my Ulcerative Colitis, which has always effected only a small area of my descending colon, has now spread to effect ascending and transverse. My last flare was about 3 years ago, and I do not recall having such widespread pain. Also, although I just discovered the Specific Carbohydrate Diet here, I have been following a diet that seems closely related, with no measurable result (no grain, no dairy, no sugar, no coffee or caffeine, no raw veggies, etc). Any ideas? I was at a conference last week, and the food choices were very limited. I found that I was eating a lot of potatoes as they seemed the least evil of the choices. I have felt worse since and wonder if the potatoes have anything to do with it. I am drinking only water and coconut water. Am convinced that the SCD will work for me so I’m ordering the book and intend to begin. Any advice will be appreciated.

-Terri S


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Many of us from the site follow SCD to treat our Colitis




8 Responses to Any Advice, I’m Starting the SCD Diet

  1. Adam
    Adam June 21, 2011 at 4:46 pm #

    Hey Terri S,

    GOOD LUCK to you with the SCD. It has literally been my savior and has kept me feeling good and my colon in place. Also, I’ve been medication free for about 18 of the last 20 months because of it, and you can too!
    As for advice, You can read many different stories(probably hundreds by now within this website all about SCD) so do that if you haven’t already.
    But from my personal experience, I have found that the limitations of the SCD diet such as no more breads from wheat, beers, and desserts like cookies and all sorts of things, are not so much limitations when you put your mind in the right place. I look at things now as the SCD diet has actually removed limitations on my LIFE, and in exchange for feeling good and being back to normal, I have had to place my own limitations on some foods I used to eat.
    So try to get into the mindset of you are making changes to your eating, with the goal of healing your colon. it’s that simple.
    Is it going to be hard at times…. you bet it is. Some of those times might be when you are away from home, or out of town on the road etc… and you think your food options are limited. Believe me, I’m on the road with my work all the time, and it was a challenge. But, over time, I’ve found that being really picky, and not breaking rules and sticking to the master plan has meant the world to me. If you want to check out some food ideas, I try to post the meals I eat with pictures and some text as much as possible here: http://colitisdiet.ihaveuc.com/ if you look on the right hand side of that page, there are links to tons of meals I’ve eaten along with the pictures etc… I hope that helps you out and BEST OF LUCK TO YOU!!
    -Adam

  2. tylotyler June 22, 2011 at 2:27 pm #

    Your such a good motivator Adam, you def help keep me motivated to stay on the scd. I agree with what you said though, for me its easy to stay on scd when im home because i trashed out all the non scd foods so there is no temptation. It gets hard when you are out at family dinners and stuff like that when there all eating like crap you kinda get some peer pressure to follow their ways, other than that the other 80 percent of the time at home its not too bad.

  3. OrdinaryWorldWhereRU June 22, 2011 at 4:10 pm #

    I would never be afraid to go to the doctor or go to the next level for medical treatment. Untreated and active is damaging to your body and your colon. As for diet, it is trial and error. The SCD diet cannot hurt to try it. Regarding the meds, after a extremely bad flair (thanks to something in particular really pushing it to the next level as I was already in a mild flair state), I now agree with my doctor. He said the real monster here isn’t the drugs, it is the IBD. For me, personally, I stand a much higher chance of having serious health issues from my UC than the drugs at this point. I was in exceptionally bad shape by the time I showed up in his office and I know I waited far too late. I also had a ‘talk’ with myself and now recognize that if I had something like cancer or another incurable disease for which the cause is unknown, I wouldn’t hesitate to take the meds prescribed for it. I think I fought it initially for this disease because it is so easy to connect it solely to foods. Foods can aggravate it though. I have read many people’s stories who have identified their specific ‘aggravators’. What I would like to read more of is people who faithfully tried SCD and it didn’t work. And those who never tried SCD and went into remission anyway, and how they did it such as were they on meds leading up to it or did they find their own diet. After the last ‘experiment’, I also question things more fully to make sure I am not being myopic in hopes of finding a fix. Like any more scientific approach, you have to have all the test groups present to validate the results. I truly hope your visit with the doc goes well and I hope you feel better soon! Take care.

  4. Michelle June 27, 2011 at 7:25 pm #

    Hi Terri!
    so sorry that you are going thru this….it sucks going thru a really bad flare. I was there last year at this time and I feel your pain. Stay positive , though…it will truly help you thru. Don’t give up. As for the diet, do what is best for you. I totally agree with Adam. The SCD completely changed my life (well, actually this site did…thx Adam). I will say that it was difficult for me in the beginning. I hadn’t eaten in almost 3-4 weeks and I was starving…and when my husband presented the diet to me I felt like my life was being taken away. But I can say now that it is just second nature. I can’t believe how many foods I was eating that really challenged my gut. I follow the SCD to about 85%. I do drink wine (I have three small children, I think its required at the end of the day…kidding of course). But I do not eat any breads, pasta or Gluten. (I am addicted to Spagetti Squash…it is my new favorite in lew of pasta!! Yum…I can send a recipe if you’d like) My doctor was very open to the SCD diet, but said that while in a flare try and stay away from all the ruffage and do a low residue diet. I fought it at first but it did help. If you follow the diet in the beginning and get past the first 2-3 weeks the rest will seem easy. Think of it like a cleanse. Almost like you are healing it from the inside and giving your colon a break from all the inflammation. But while in such a flare I wouldn’t go with out some type of med to help w the inflamation. I agree that it ttly could do more damage.
    I wish you the best of luck and pray that your flare subsides soon!

    Take care.
    Michelle

  5. Amber July 29, 2011 at 12:05 pm #

    Hi all,

    Can anybody tell me about the first few days, weeks, months of the SCD diet? The beginning phases? Did you follow it as strictly as it is laid out in the SCD Lifestyle book? I am going to begin the diet as soon as I get all of the kitchen equipment, but I am definitely nervous. I think as soon as I have all of the food prepared, I won’t feel so anxious and overwhelmed.

    I was diagnosed with UC two years ago and have been in and out of remission with meds ever since. I am currently on Remicade, and recently ended a dose of prednisone. Things are acting up again, as I never seem to be on track for very long. I want my life back. I’m willing to do anything at this point.

    Any insight you have on the phases of the diet would be much appreciated. Thank you!

    Best,
    Amber

  6. Trish July 31, 2011 at 11:55 am #

    Sorry to hear about your flare, Terri. I would go on the steroids, even if it’s only short-term. Elaine Gottschall, who invented the SCD, wasn’t against prescription medication, and the SCD can take a while to work (and it doesn’t work for everybody). It is possible that your UC has spread – I have it in the ascending, descending and transverse colon, and the rectum – the full set. ;) It has jumped around rather than being continuous, which apparently is a bit unusual. Amber, I followed the intro diet TO THE LETTER, which meant living on the intro chicken soup for a fair while. It is very boring, but my symptoms died down inside 24 hours and were gone in three days, and they stayed gone as long as I was strict – this was after a three-month flare. I didn’t want to take Pentasa (I took it for six weeks and then my improvement on SCD was so fast the GI said I could wean off it). I learned quickly to only introduce new foods very gradually, and one at a time, and keep a food diary to connect it to the symptoms, etc – otherwise you don’t know what’s doing good or bad. I didn’t find it very difficult to stick to SCD because when I got properly sick, I was SCARED TO DEATH: I would have done absolutely anything to get well again. And I was grateful to find I only had UC and not bowel cancer or Crohn’s. UC is awful, but at least it’s curable with a colostomy if all else fails – we are lucky compared with Crohn’s sufferers.

  7. Trish August 1, 2011 at 12:45 am #

    Amber – I just thought of other info re the phases of SCD. The first three days: boring. The first three weeks: sugar cravings and constant ‘hunger’ (not sure it is real hunger, more the sugar…). That’s the really hard bit (I did a lot of power-walking to take my mind off it). The first six weeks are fairly difficult, as you adjust to a new way of eating and painstakingly reintroduce veg one at a time, etc, but once you can eat raw fruit and salads again, life gets a lot easier. After three months, expect a mild flare as the bacteria in your gut make their last stand (going back on the intro diet for a few days helps here). After that, it’s just a way of life.

  8. Julie September 1, 2012 at 12:57 pm #

    Hi, I keep looking on these websites trying to find some help or answers. I have UC and was diagnosed in january 2004. I have had eight years of remissions and flare ups. Have been on steroids and then weaned back off of them. I have lived by a gluten free diet since diagnosis but nothing seems to work now. I am waiting for a copy of breaking the vicious cycle but looking on line I decided to make a start. I have made a huge batch of chicken soup and for two days started the day with scrambled eggs. I don’t have dairy as I feel that I have never tolerated it. Over the two days of attempting the intro diet without the book I still have what can only be described as leaky gut and every night is horrendous. I am up every night to pass very loose stools and can only describe it as weeing from my back passage. The colour is very light and the scent dreadful. I am exhausted, needing water all the time, have had headaches and just need some help!!

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