I am a nurse, wife, and mother of three kids from Maryland, USA. My husband is 49 years old and has ulcerative colitis diagnosed this year (2012).
Specific Carbohydrate Diet (SCD) Success
My husband “H”. became sick on July 5, 2012. We thought it was an infectious diarrhea, and made several visits to off-hours clinics, where H. was prescribed antibiotics. Two weeks later he was still sick with bloody diarrhea, fever, chills, and some vomiting. At this point we got a call from the lab saying that H.’s white blood cell count was very high and might indicate sepsis. We were told to go to the emergency room immediately. H. was hospitalized for 5 days and treated with IV and oral antibiotics. When he was discharged, he was thrilled, but I still felt very uneasy because he just didn’t seem to be recovering, and we didn’t even know what was wrong because all his cultures were negative, and an abdominal CT showed nonspecific “inflammation.”
A week after discharge, we went to the GI specialist that H. had seen years ago for (I thought) hemorrhoids. At this point, H. was so weak he could not stand at the counter in the doctor’s office to register. His face looked deathly, and he had gone from 175 pounds to 152 pounds in just one month. We went into the doctor’s office, sat down, and told our story. The doctor’s first comment was, “I think this is ulcerative colitis.” It turns out that he had treated H. years before for proctitis. I looked blank, trying to remember what proctitis was, and the doctor explained that this is a mild form of UC. The very next day, H. had a colonoscopy that confirmed the diagnosis of UC involving the entire colon with extensive inflammation. Of course you’re always hoping for a limited version, but this was not the case. I felt relief to know what we were dealing with, even though the chronic nature of the disease was scary. Looking back, we realized that H. had had symptoms for years, but we just interpreted the bleeding as ‘hemorrhoids,’ and the frequent trips to the bathroom seemed like a minor variation on the normal. H. started taking prednisone that evening. He did feel better as the days went by, but continued to have frequent bowel movements, about 6 or 7 per day.
The next week H. started Asacol and Entocort. He stayed on Asacol for about three weeks, and this drug was a disaster for him. Bowel movements eventually increased to 12+ per day. (I stopped counting after 12 because it was too depressing.) Searching online, I discovered that some people have more, not less, diarrhea on Asacol. At this point in time our doctor was on vacation, so we made the decision to stop Asacol, and reassessed our options. We had made a half-hearted attempt at the specific carbohydrate diet a few weeks before, but now, in desperation, we decided to try it 100%. H.’s BMs at this point were about 8 per day off Asacol. During the first week of SCD, H.’s symptoms were the same and he actually lost weight, down to 149 pounds. His clothes were hanging off of him. I got my yogurt-maker in the mail and made the first batch. H.’s bowel movements increased in the first 1 to 2 days of eating the yogurt. Well, I told myself, that’s just the bad bacteria dying off. But I wasn’t really sure.
By day 9 of the diet, we decided that we would continue through the weekend, then stop if there was no improvement. It was just too hard, and we didn’t even know if it would help. The next evening we were sitting on the couch and H. placed his hand on his stomach. “Something is different,” he said. If you are a family member of someone with UC, you know that ‘different’ is often ‘bad,’ and I was almost afraid to ask. But this was a good change–not so much feeling something, but NOT feeling the badness, the sickness, the crampiness. The next day, H. came home from work, stood in the doorway, and began to cry. “Today was a good day,” he said. “I had so much energy.” He was down to 3 to 4 bowels movements a day. Over the next few weeks, the bleeding stopped, his bowel movements became formed, and eventually he was having ONE bowel movement per day.
And that’s where we are today. H. now weighs 169 pounds. (I told him he can stop now.) He has 1 to 3 formed BMs per day, depending on what and how much he eats. We are still weaning the prednisone, and occasionally after a decrease he will have some bleeding or loose stool, but this quickly resolves as his body adjusts to less steroid. I can only attribute my husband’s improvement to SCD. At the time that he improved, we were already weaning down the prednisone, and had not started any new medications. Since then, H. has started 6 MP–he wanted to do this to prevent recurrence and possibly have an option to loosen up the diet in the future. He has stuck to the diet without exception since the day we started. We are so grateful to be where we are right now, and couldn’t have imagined such relief from his symptoms a few months ago. I would have loved to read an encouraging story when we were coping with this illness at its height, so I wanted to share this with others in the hope that it could bring some optimism to someone who needs it. I would be happy to answer any questions about what we do, what we eat, how we made the changes, or the timeline of improvement. Best wishes to all.
written by Cynthia
submitted in the family and friends venting area