Hi UCers, I’m Kim and was diagnosed in 2001. In 2009 I went from mild UC to severe UC, and have made my way through various medications and tried a few diets.
I have updated my story on the site a couple times, and am now back to ask for some feedback from others about lab testing.
Some more about Kim:
I just moved from Hawaii to San Diego, the most wonderful place ever in my opinion. However, the move, as usual, has placed me in a flare. My husband is a marine so we move every few years, and every time my symptoms get worse, requiring more meds. I have 2 beautiful girls, age 3 and 1. They are the center of my universe, so my hobbies and life are consumed by doing preschools and playground activities. I also enjoy jogging.
I started having mild symptoms about 4 months after giving birth, around October 2014. Once we moved in July 2015 I started getting worse. I tend to have a lot of rectal pain, mucous, blood, and am running to the bathroom more often. I have days where I will go 10+ times, and other days only twice.
Kim’s Lab Testing Story:
The worst part about moving and starting to flare, is you also have no doctor! I finally got in to see a doctor, and am scheduled for a colonoscopy next month. Until then, they will not switch my meds, so I am kind of just waiting it out. My most recent drug journey was Humira, which I took for over 6 months with no relief at all. Last month the new doctor took me off that and I am now only on lialda and prednisone, still with no relief.
My next step is to try Envytio, which I can start after the colonoscopy results.
He has suggested I do the Prometheus IBD sgi diagnostic lab to see if I have Ulcerative Colitis or Crohn’s. My inflammation throughout the years has pointed to UC, but I did have one colonoscopy in 2012 where I had an ulceration in my small intestine, which has brought up the question of my diagnoses. My insurance will not cover it, so I am looking to pay about 700$ myself. Any thoughts on if this will be worth it? It would be great to know for sure which disease I have for sure.
The other option of course is to wait it out and see how my future colonoscopies and symptoms go. I am just struggling with this decision because of the cost really.
I feel a little lost and alone right now. I am tired of taking meds that don’t work, but I am not so good at adjusting my diet either.
I did well sticking to the SCD and FODMAP diets because I could tell myself what I could and couldn’t eat, but in the end with both diets many of the foods made my symptoms worse. So I go back to my regular diet, but then I have trouble controlling what I eat and figuring out what is making me worse.
Medications / Treatments (what Kim has been up to):
Medications right now-Lialda, prednisone, turmeric, probiotic
Have tried/stopped working or no results-asacol, rowasa, canasa, cortifoam, Imuran, remicade, humira
Diet struggles-unable to eat a lot of fruit, vegetables, anything high fiber. It seems I am better off eating a burger than a healthy meal. SCD, FODMAPS, both made me worse. Want to try to still work on diet but I keep putting it off, it frustrates me. It doesn’t help that I like to eat.
written by Kim
submitted in the colitis venting area