Intro:
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.
Kim in her most recent picture for this story doing some planting!! (Yeah Kim!)
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.
Symptoms:
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
Hi! My name is Kimberly and I was diagnosed in 2001. I have a great husband and wonderful daughter, 20 months old, along with a doberman and miniature pinscher.
