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I’ve Got SCD Blues

(I’m a 25 yr old mother of a tornadolike 1 year old and Diagnosed with Indeterminate Colitis in January of 2010. (marker’s for chrons and UC present, they left diagnosis open so insurance would pay for any type of meds that work). Went off of Apriso to try SCD.)

My SCD progress has me very frustrated at the moment and I need some advice and/or encouragement! At first the diet had me EXTREMELY excited, so I think I’m crashing hard from that high. I started the diet Hardcore style September 1st which was the same day I completely eliminated meds. The two weeks leading up to that day I had entirely cut out caffeine (August 23rd ) and gradually started eating only SCD legal foods except trace amounts of “no-no’s” found in condiments, seasonings, marinades etc. Also, weaned my medicine down making myself ready to jump all in September 1st. So September 1s t came and I started journaling results and food intake from then on.
My results were remarkable. The first 2 ½ days I actually got worried because I didn’t even have a bowel movement period! Then when I did, it was really solid. My meds that I had been on since January had been able to make my BM’s solid but not this solid, my cramping was gone, gas gone, headache’s diminished, hot flashes gone (meds I think caused those?), and energy was high. My stools were even borderline too solid at some points! I don’t know how to explain it but there once upon a time was a day that I actually enjoyed pooping! It was a long time ago feeling to recall but I could tell the digestive process going on inside me while doing this diet was how it used to feel pre-IBD. The only lingering problem was the blasted joint pain.
I couldn’t believe after 3 1/2 years of dealing with this SHIT ( literally) this diet change was all I needed. Not saying that to minimize its difficulty because the way I was doing it was/is the hardest thing I’ve ever done in my life. I had a basic set of foods I started with and every other day introduced a new food and if I started to get any signs of backward momentum I removed it and put it on the “try again later list”. This was working great until September 25th when the ole’ familiar loose stool started coming back that night and it has became progressively worse. I am on the 7th day now of a full out flare, a reminder of how bad things used to be. My joints hurt all over, horrible cramping in front and aching in back, the smelly hot gas that I have to apologize to my husband for and thank him for keeping me around even though I stink, the barely making it to the toilet throughout the day, the having to get up multiple times through the night to buttpee”, the worried to go anywhere cause I need to be close to a toilet and the general depressed hopeless feeling that comes with the territory.
I removed any culprits I could think of such as the recently added medium cheddar cheese (which I thought would be fine because the mild cheddar meshed well), a commercial salad dressing (the Brianna’s brand Real French Vinagarette, which was stupid on my part, just hopeful wishfullness that there would be a quick fix if I ever didn’t have a way to make my own, I was for sure that was it cause I was skeptical trying it anyhow) and a new bottle of the same kind of vitamins I had been taking since day one ( thought maybe something was different about them?). However, here it is 7 days flaring and no improvement!!! Not to mention I have my inlaws and my own mother terrified that I varied from the doctors order and went off my meds breathing down my neck that I should go back on the medicine. I really really really really really don’t want to be on any kind of drug. How long should I let the flare last before taking my meds again? How long has other peoples lasted tha t are doing the SCD? I’m not really familiar with the “flare” process, I pretty much had straight diarrhea for 3 years straight, then finally got on some meds that made my bowels solid enough to cope with. Should I just keep eating scd legal foods or when should I entirely go back to the intro diet?
I’m also really…just mad. I mean if I am going to flare I wish I had at least eaten something really good that I think about all the time like Little Debbie snacks or icecream or oreos or OREO ICECREAM!! But no, I really did nothing wrong and still I get the crap end of the stick! I’m having a pityparty I know. Regardless, It seems even harder to stick to the diet when I’m not even getting results I want. Frustrating. So frustrating. I’m also worried that I flared before the 2 month mark Elaine spoke of. But I find it hard to believe the diet won’t help me because of the drastic results of the first 3 weeks. I dunno, anything insightful or inspiring would be great right now! Thanks for reading my vent.




apriso, colitis, SCD

8 Responses to I’ve Got SCD Blues

  1. Kat October 4, 2010 at 9:41 am #

    I think you really need to post these questions on the BTVC-SCD Yahoo Group. If you don’t have a Yahoo account it’s worth it just to join that group and get help from them. http://health.groups.yahoo.com/group/BTVC-SCD/

    Since you did find relief with SCD when you first started it, can you go back to the foods you were having maybe in the first week? Focus on lots of broth/soup.

  2. Adam
    Adam October 4, 2010 at 10:25 am #

    From my perspective which is now just about 14 months into the SCD diet with great success, it for sure was not a linear line of improvement in the early days/weeks/months. I can remember having early success after a few days and then having a day of two or three times as many bowel movements with some blood, and then having a week of rather good days followed by two or three days of not as good days etc…
    for me it seemed to be that over the longer time span of the first several months, it was easier to see the more longterm improvement (which I hope everyone is out for!) and that is what I hope others look for with this diet and with treating this disease(whether you choose medications, diet, surgery, or meditation, or anything else for that matter)
    So, in the end, its greatt hat you have seen some nice improvements, and I hope that continues for you. awesome posting, and super awesome details, I think most of us UC’ers can relate (especially times where I’m shocked my wife hasn’t thrown me out of the bed after some not so nice smelling stuff flying out..)

  3. Matt October 4, 2010 at 11:09 am #

    I echo Adam’s thoughts about non-linear improvement. I’ve had lots of ups and downs, 1-2 days of “I’m Healed!”, and then two weeks of “WTF?” The important part is that when I look at my improvement over a longer time frame (months, not weeks), I see improvement on the average.

    With that said, if your flare just keeps getting worse, not better or staying the same, it might be worth talking to an N.D. who understands the SCD.

  4. Steven Wright October 4, 2010 at 6:44 pm #

    I too want to echo what was already said, think of it like this, you had 3 years of chronic diarrhea followed by a fake remission because of some drugs. It has taken you close to 4 years of sickness to get to this point can you really expect your body to heal in a month or even 6 months for that matter? Our bodies are remarkable and amazing and they will heal themselves but we gotta give them time and take it slow. Learn to enjoy the small changes along the road.

    I would echo what Kat says, you didn’t post your diet but seeing how you were already flirting with SCD Illegals, I would suggest you go back to meats, veggies and no more than 2 fruits a day until this passes.

  5. Diagnosed2010 October 6, 2010 at 5:22 pm #

    Thanks everyone so far for your responses!! They were very helpful for my mental state at the time. Unfortunately my flare is still in horrible phase, I had to have my mommy come to the rescue who lives a state away but wow what a huge relief just to have her here. In the 37 days I’ve been officially doing this I’ve went from my normal weight of 115lbs to 100lbs and have got extremely weak. The morning my mom actually demanded on coming down to help with my little one I had actually almost passed out 3 times. BUT, I’m a fighter and personally really have a strong disdain for the pharmaceutical industry so I’m not giving up on giving this natural way its full chance!

    Kat: I have been checking out that yahoo forum and posted the first of many questions to come. Thank you so much for the direction! I keep toying with the going back to mostly chicken broth idea but I’m concerned with my weight! I don’t want to lose anymore weight!? If I’m not careful I’ll be able to be a skeleton for Halloween and still keep to my strict financial budget by not even having to purchase a costume!!

    Adam: No worries on the delay of the post and thanks for informing me of the nonlinear expectation I should adopt to avoid the blues! I now understand there are going to be many ups and downs on the way but I’m perplexed to have went straight to solid stools (escalating to borderline constipated at times) only 1 maaaaybe 2 a day for the first 24 DAYS, then going to pure water stools within 24 hours and now its nothing bust waterpoo and although I’m doing my best to journal I can’t keep track of how many times I go to the bathroom right now! ( in fact I might be losing so much weight because the downstairs toilet is broken right now and I keep having to book it up our steep flight of stairs to leave the porcelain king my present of stank) note to self: fix the toilet. So would you consider it “normal” for that extreme of a swing?

    Matt: I think I will look for an ND, I went to an MD DO for a bit but he was so unorganized I just couldn’t handle it. I wonder if an ND is covered by my insurance? Do you know if they typically are? I got hopeful this week that massage would be because the muscles running the entire length of my spine ache so bad a keep begging my husband for a lil rub… Id even settle for the half-assed rub while he is trying to watch American Pickers or Pawn Stars but he seems to have a chip on his shoulder that I myself am a massage therapist and he doesn’t get massaged enough. Blah. AND not covered by insurance!

    Steven: You are absolutely right!! Thank YOU for reminding me of my own beliefs! I KNOW the body is absolutely AMAZING and has AMAZING capabilities. I actually preach that all the time to people, I guess I got blinded in the fear and frustration…seriously thank you for grounding me again! And as far as my diet, I must have been unclear. Since September 1st I went STRICT SCD, I only “flirted” with the illegals in the weeks leading up to actually starting the diet. The last time I was this sick I tried “the makers diet” and I couldn’t adhere to it, so I knew for this one I should try to wean myself off some stuff and test some recipes before jumping all in so I would have some “go to” meals that way I wasn’t trying brand new recipes and discovering they are disgusting and cheating in the hunger of the moment! UNLESS you were referencing the salad dressing I tried…maybe that was cheating but I thought the label really seemed hopeful..not making that mistake again…Elaine was right…don’t trust the labels! But other than that all I had successfully added was Chicken, Red meat, Cod Loin Fish, Carrots, Zuchinni, Squash, Butter, Garlic, Mild Cheddar cheese, Onion, Green peppers, welches juice homemade gelatin salt and pepper. That’s all I was consuming and is all I am consuming now except I started juicing a mixture of carrots, apples, celery, and spinach yesterday.
    THANKS AGAIN TO YOU ALL

    • Adam
      Adam October 8, 2010 at 7:03 am #

      Hi There, Regarding your question on such a massive swing from doing pretty good to several days of straight waterpoo(great new term!) I just don’t have a great answer for you on that. I can say that personally I have had a few days in the early months of being on SCD that I went from many a great bowel move days to a very occasional waterpoop, but I did not have anything that was sustained, and when I did have a mini flare, it was a gradual slide into the flare and a gradual slide out of it. What is the update from you from the past few days since you commented? anything new to report? Hang in there, you for sure are a fighter!

  6. Diagnosed2010 October 10, 2010 at 9:40 am #

    Well, I Went back to the intro diet. The REAL intro diet. I did a general diet of a few simple allowable foods my first go round but didn’t do the chicken soup. So this time I’ve pretty much just been doing Chicken broth with chicken and pureed carrots along with welches grape juice diluted gelatin. Only that day 1. Tried adding hamburger day 2, felt a subtle negative change and decided it wasnt’ worth the risk so took it out. Day 3 back to same as day 1. And today i’m on day 4, gonna add me some fish today and see how that goes over! The waterpoo consistency hasn’t changed AT ALL (so a bit dissapointed there) BUT frequency has went down significantly, plus the amount coming out is not a great deal so I think i’m absorbing most of what i’m eating which would explain why i’m not shedding the pounds like i was at first. Weird change i’ve had is hiccups every now and then. Dunno what thats about because I almost never get hiccups. But got them the last two days at some point. Just found that peculiar. And on the more “thats not proper to talk about end of things” I’ve had the itch-factor going on directly inside the exithole. WHICH I’m hoping is a good sign of healing…i remember having it when i was doing enemas prescribed by doc earlier this year and It got better soon after. So…fingers crossed there! Thats where I’m at so far!

  7. Sheila Holland November 7, 2010 at 1:17 pm #

    Hi,
    Just skimmed your posting. I am 60+ years old and follow the SCD diet. It is the only thing that has helped me. Here is the nutshell version of some things I have learned:
    you absolutely cannot stray from what is written in the book. Believe me, I know what a pain it is to make everything from scratch, but you have to do it. There are no convenience foods for us. Well, I consider bananas to be a convenience, but they don’t fit most people’s definition. You must do the intro diet as written and then do what the book says. If you cheat you are only hurting yourself and it isn’t worth it. It is difficult to believe, but the tiniest amount of an illegal substance can set off symptoms for a long time. Sometimes you don’t even know what happened, but maybe the vitamins you use got reformulated or something. It is easy to get discouraged, especially with the major set back you had, but believe that you are on the right track and re-dedicate yourself the the diet. Remember your system has been messed up for a long time and it takes a long time to heal, even if you are doing all the right things. Also, I find that drinking a cup of homemade chicken stock before each meal if very healing. Just my two cents worth. Good Luck to you. Sheila H.

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