My daughter just turned 18 and she has Ulcerative Colitis. We live in Vandalia Ohio – just north of Dayton. Emily is a bright young person who has seen her life change drastically due to this disease.
Some more about my daughter:
Emily loves to read, enjoys video games and hanging out with her friends.
Emily has cramping in her colon, extreme fatigue, and joint pain.
Does SCD Work?
Emily was diagnosed in March of 2012. A scope confirmed the presence of UC. She was put on Prednisone and her symptoms subsided for a few months. Of course the side effects were awful. In October of 2012 the Prednisone was replaced with Immuran. A scope in late 2012 revealed that the ulcers were healed but she continued to have some cramping, nausea, skin rashes, joint pain, and extreme fatigue. In addition to the Immuran, Emily also takes Methadone, Vicadine (occasionally), Lirica for pain.
Emily was an A student in the local public high school at the time of her diagnosis. She had to stop going to school due to the disease, tried an online school, and finally had to drop out. The constant pain and fatigue are more than she can bare. She has become bitter, depressed, and feels hopeless. She is treated for depression and is in counseling but is making no progress.
Emily complains daily of the fatigue which she describes as being very much like the complete energy depletion athletes describe as “bonking”. We assume that is do to the malabsorption that we have read about.
As her parents, we have decided to put Emily on the SCD diet. We have read “Breaking the Vicious Cycle: Intestinal Health Through Diet” and it makes sense to us. Currently we are preparing to have her go on the diet by collecting recipes and have decided to hire a chef for her to make sure all foods are properly prepared and available.
Although the diet makes sense to us, it has never been recommended to us.
Emily has seen three different GI specialist and not only did none of them mention the SCD diet, we were told by all three that diet was not an issue. That makes us wonder of course if the diet really works. Why would the medical profession ignore a treatment that is effective as the SCD diet is advertised to be?
At this point we plan to go ahead with the diet and hope for the best. We really have nothing to lose. Emily’s condition seems to get worse by the day and we are getting no new ideas from the medical profession.
Prednisone – effective but terrible side effects.
Immuran – has kept the UC at bay – she has no diarrhea or bleeding but continues to have all the other UC symptoms including fatigue, nausea, skin rashes, joint pain etc.
written by Tom (Emily’s Dad)
submitted in the colitis venting area
Here is the book Tom is referring to: