Help With Specific Carbohydrate Diet

Introduction:

40 year old mom. diagnosed with UC 5 years ago. I have not had gluten, caffeine or alcohol in 3 years and want desperately to get better.

My Symptoms:

bloating, inflammation and pain.

My Story:

I have had diagnosed UC for five years now. I have had numerous health problems and surgeries over the years and recently was told I have suspected adrenal fatigue. Surgeries…Gallbladder removed 2005, cervical fusion 2006, shoulder surgery 2007, sinus surgery 2011, h pylori infection 2011, shoulder surgery 2012) I took prescription NSAIDS for years both before and after my initial orthopedic surgeries. I am convinced this is what caused my UC. I am very fortunate that my UC is mild to moderate, I have not had to take steroids for my flares yet. I have made drastic changes to my diet over the last three years with the help of a naturopath/nutritionist. I have been gluten free for 4 years, have no alcohol or caffeine EVER and avoid grains. I have had insomnia for at least a decade as well as hypoglycemia, both hallmarks of adrenal fatigue. I have dealt with chronic neck/back/shoulder pain for a decade as well. The pain has improved im mensely with the improvements to my diet but I still suffer flare-ups of pain several times a year, always in conjunction with aggravation of my UC symptoms. My body is extremely sensitive to medication and “bad” foods and it also seems to have a strong inflammatory response where when my neck hurts my stomach also hurts.

I do a ton of Bikram yoga, it has truly been a life changing practice for me. I have done it for the most part 2 to 3 times a week for 3 years. It’s the only thing that really seems to loosen my muscles and relieve the tension. I get a weekly massage and see two chiropractors, one regular and one upper cervical doctor. I get rolfed every three weeks as well. All of these things help to keep my life and pain mostly manageable. I am also extremely fortunate that my UC flares are easily controlled although I am not always sure what causes them. I take Lialda daily, anywhere from 4 during a flare to 1 when I am feeling good (rare). I use Canasa when I am having a flare and that and eating mostly bland foods usually does the trick.

I recently saw a doctor who tested my hormones. DHEA and Testosterone were very low and cortisol was at the “low end of normal” via a blood test. I was put on Testosterone/DHEA cream and Progesterone cream and oral hydrocortison (all compounded bioidentical) I felt AWESOME for a few weeks then went into a flare.

I was extremely frustrated and started researching diets for UC. It’s hard to feel like you are doing everything right with your diet and lifestyle and still be struggling (as everyone on here knows). I stumbled across the SCD and got the book and jumped in wholeheartedly. I felt GREAT for about 4 days then all hell broke loose so to speak. I began experiencing extreme hypoglycemia, gained 5 pounds and wake up every night AT LEAST ONCE to eat. If I don’t eat when I am hungry in the middle of the night I get a migraine.

I am about 6 weeks on SCD and simply cannot do it. Unfortunately I have been unable to eat vegetables of any kind for the last several years due to my UC. I was STARVING on the diet. I couldn’t get any of the allowed carbs to work for me and because I work out so much I was miserable. The midnight eating is also for the birds. I called my doctor and she took me off the hydrocortisone which instantly sent me into withdrawal and detox from only 2.5 mg! I tapered off of that recently and switched to more of a paleo diet. I tolerate purple and japanese yams well so started adding purple yams to my diet about a week ago. I feel so much better and the hunger has died down substantially. I still have to eat in the middle of the night but it’s not nearly as invasive.

I have two questions for the community…

1) what should I do about my diet? I want so desperately to do SCD to try to heal but not being able to eat veggies (for now) is a big problem

2) has anyone else discontinued hydrocortisone and gone into a flare?

I am having an extremely painful flare currently. It started before I stopped the hydrocortisone but is much much worse since stopping it. I think the hydrocortisone was causing some of the irritation in my colon. It worked great for a about a month then I started feeling terrible and my kidneys and liver were in distress (per my naturopath). It’s not unusual for my body to reject medication after using it for about a month.

I am at my wit’s end with both the diet and the aftereffects of stopping the hydrocortisone. I was only on it 6 weeks at a very low dose but am miserable.

Any help or guidance anyone has would be greatly appreciated!

Where I’d like to be in 1 year:

I would like in 1 year to be medicine free and controlling my disease exclusively with diet.

Colitis Medications:

Lialda (daily) and Canasa (as needed)

written by Texas Rose




3 Responses to Help With Specific Carbohydrate Diet

  1. Allison-3
    Allison September 15, 2012 at 8:19 am #

    Hey Texas Rose-
    I had a very similiar experience when I was strictly following the SCD diet to help treat my UC. I think the diet is amazing for some people and not so much for others. In the past, I have always been hypoglycemic and had crazy mood swings and hunger at night… since following more of a Paleo diet that has all gone away. I hate to even say I am on a diet because it’s just how I eat. I eat animal protein with every meal and fruits and vegetables (mild, cooked, easliy digestible ones when I am having flare symptoms)and I eat carbs but no gluten and no milk. I tend to stay away from the nightshades bc they bother me (eggplant, peppers, potatoes). I eat tomatoes but cooked for hours and they are okay. I do eat the SCD yogurt once a day for the probiotics and fat.
    I was on hydrocortisone for 18 months… the dr took me down too fast and I had a severe withdrawal which put me in a mini flare. I went back on full does and tapered VERY slowly. I felt soooo much better off the hydrocortisone and actually began gaining weight again and the night sweats went away.
    All that yoga sounds awesome! For me the stress release of yoga and meditation is the 2nd biggest factor after diet. Personally, I ditched all the meds 2 years ago and I’ve never looked back. I am on the tail-end of a month and a half long flare. It was superscary and painful but I was adamant about not going to hospital or winding up on drugs… and guess what I am feeling pretty good again.
    A few of the UCers on this site recommended Astanxanthin (inexpensive, natural anti-inflammatory from health shop). I am taking 6mg per day (2mg @ each meal with fat), 1000mg vitamin D, digestive enzymes and a gut healing supplement powder with slipper elm, aloe vera and l-glutamine.
    Best wishes. Allison

  2. UC Family Boy
    Uc family boy September 15, 2012 at 10:59 am #

    Hey Texas Rose,
    Do you take any supplements and or probotics? I think diet alone will starve off the bad bacteria but if the good are not being helped out I assume the bad can stick around long enough to ferment and keep the inbalance cycle going. I guess the natural diet and supplement approach is long slow and difficult in modern society. But stick to it, I am sure there will be reward.
    I have started the scdiet, I have had one week on the phase one whilst on 40mg Prednisone. Definitely slow progress, my food intake is the same each day so far with chicken being introduced today (mainly been on fish). I plan to take it so very slow and allow my colon time to recover and slowly introduce supplements and probotics. I want to do it right first time round so I can balance and heal. I saw undigested spinach in my BM so I kept with boiled carrots and for now took out spinach, also scrabbled eggs didn’t currently agree (in a flare) so again removed till later. I feel the scd is not about just eating the legal foods, I read it as being important to slowly introduce whilst healing. Remember your colon works when you are not eating…it is still working away for us, so allow it healing time. For us all this is going to be about patience, strength and determination and I am sure diet can work for you. It seems to have worked for many others..

  3. Bev September 15, 2012 at 4:11 pm #

    Probiotics!! Add them for sure!

    Cheers:)

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