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.
bloating, inflammation and pain.
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.
Lialda (daily) and Canasa (as needed)
written by Texas Rose