SCD – Don’t Make the Mistakes I Did

Introduction:

Hi my name is Mike and I have had UC for about 10 years. I have been following the SCD for about 3 years and have had some ups and downs during this time. I feel now I know where I have been going wrong so hopefully its full steam ahead and onwards to healthville!

Symptoms:

UC controlled through diet except for annoying urgency!

My Story:

I’ve tried to write my story out a few times but it ends up as the ramblings of a dribbling idiot so I think the best way to do this will be to tell my story in handy bullet points!
  • First had signs of UC at university in 2002. Pretty much ignored it and hoped it might go away. Almost certainly kicked off by course of antibiotics.
  • Eventually saw a doc. Was initially told it was IBS and put on fibre supplements and anti-spasmodics.
  • Got diagnosed with UC by a gastro in summer 2003 and put on prednisolone and anti-inflammatories.
  • Believed everything the docs told me (surely they know best, right?) including stuff about diet having no effect on UC.
  • Kept the UC in a manageable state with steroids for about 6 or so years. Had a bone scan and found out I had signs of osteoporosis.
  • Decided I didn’t want to be on the drugs for the rest of my life and so started looking online for some answers.
  • Found out about SCD and bought Breaking the Vicious Cycle. Read it in a couple of sittings. It was such a huge eye-opener. It made so much sense and gave me great optimism about the future. Found the Yahoo group and a few other resources online.
  • Started the diet without the intro – straight into almond muffins and nut butters – as a way of easing myself in. Then started again with the intro.
  • First few months were REALLY tough. I guess it was getting my body used to burning fats instead of carbs and probably some die off mixed in but whatever it was it was tough going.
  • I ended up having the die offs at 3 monthly intervals as mentioned in BTVC(Breaking the Vicious Cycle). They were tough too but after each one I’d notice new levels of improvement so this spurred me on.
  • After a year and a half on the SCD my food list was still really restricted. With hindsight I think this is where things started to go wrong for me. I was still eating mainly intro foods with a few additions here and there.
  • Finding out about the SCD naturally led me to follow the progress of others to see what extra tweaks succeeded for them. This led me to taking antifungals to try and further improve my already improving situation.
  • It was when I started ingesting oregano oil in reasonably large doses that things went really wrong for me. I think this wiped out my good bugs as well as the bad ones and then new bad ones proliferated particularly candida which I hadn’t had a problem with before.
  • This was the beginning of a tough year for me. I struggled with the candida and now, with hindsight, see that I was undernourished from cutting my food list even harder to remove all the sugars. I ended up removing the dairy too which of course meant the majority of my already measly amounts of fat calories.
  • During this time I really struggled with brain fog, anxiety and fatigue which I put solely down to the candida and so just powered through on a really unhealthy low calorie diet to try and get rid of the candida.
  • Then I lost my job and became pretty depressed. I’d been on my own restrictive version of SCD for about 3 years at this point and was underweight and my body was unable to cope with the stressful situation.
  • In January of this year I ended up having a big flare up. I hadn’t had a non-SCD related flare up for about 3 and a half years and the symptoms of those had been solely gut-based. This time I ended up with joint pain, swollen ankles, lumps on my legs. I was back to 10+ bowel bloody bowel movements including getting up about 4 times a night. Not good.
  • Docs put me back on the steroids for 8 weeks.
  • Fortunately this did the trick and I’m now in remission again and with a much stronger resolve to improve my diet and increase my food list and put some weight on.
If there was one thing that I’d want people to take away from this is it that if you stay too restrictive for too long then you might end up in the position that it is not what you ARE eating that is harming your health but what you are NOT eating. Your body needs to be maximally nourished to be able to bring down levels of inflammation and fight the critters causing all the problems. You need to test new foods carefully when introducing them back into your diet and if you come up against something your body can’t handle, don’t give up on it forever. Try it again in a few months when more healing has occurred and you might find you are able to handle it.
I do have one question for the good readers of ihaveuc.com. I have managed to get pretty much all my symptoms under control through the SCD but have always struggled with urgency. I feel that if I had 5 minutes to get to a toilet rather than 30 seconds every time then I would be less anxious and much more able to lead a normal life.

colitis urgency

Has anyone got any tips

for improving/decreasing urgency?

Where I’d like to be in 1 year: 
Off the meds, eating a full and varied diet, happy, healthy and enjoying life.
Thanks for reading, Mike
submitted in the Colitis Venting Area

Tags: candida, urgency

3 Responses to “SCD – Don’t Make the Mistakes I Did”

  1. AidaApril 21, 2012 at 9:23 am #

    Hello Mike:

    For me what really has helped to lower the urgence and to get solid stools has been probiotics.
    I take Dr. Ohhira Probiotics. They do not need refrigeration as the rest of them and they have worked on me. You can get them
    on the internet at an affordable price. It is one capsule in the morning and one in the evening on an empty stomach one hour
    before foods or one hour and a half after food. Search on Google “Dr Ohhira’s Probiotics” and you will see many places to buy and videos from Youtube where this japanese Dr. explanins his product.
    By the way I am medication free and avoiding alchohol, coffee and sodas only.

  2. AdamApril 21, 2012 at 12:47 pm #

    Great posting Mike! I definitely agree with you that many people who start using the Specific Carbohydrate Diet find themselves in a rut where they don’t open up the types of foods (and usually due to being scared of the consequences if something doesn’t agree)

    I guess, in many ways we are all unique in our gut bacteria colonies, but at the same time, you’ll never know until you try something if it will agree with you at any one point in time. And as the body changes..more testing right?

    I wish you well with figuring out the last hurdle with the urgency. I found that when I cut back on the coffee intake, and for me (Trader Joes Decaf) has been my go-to cup for a long time now, I gain much more control of the urgency. If I for some crazy reason got up into the 3 plus cup a day mode(which I rarely do) then urgency sometimes kick in.

    Best of luck, and great post!

    Also, I posted the question about urgency and how to stop/deal with it on the facebook.com/ihaveuc group and someone posted back:

    “get your doc to give you a suppository called canasa. works wonders!”

  3. NethMay 3, 2012 at 1:05 am #

    I have CU for about 20 years and had more or less the same experience as you had.
    I got rid of the Prednison (30/40 mg) and started using probiotics, vitamin E, D,ginger etc. The big differnce came when i started to use and make my own kefir.
    I’m down to 1 (sometimes) 2 bowel movements a day and eat more or less what i want. I quit pork meat and sugars. The only medicine i use is Salofalk 1mg klysma. Lost about 18 kg and feel great again.

    Greeting from Holland

Leave a Reply