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
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.
Check if the free 23andme test on https://www.23andme.com/ibd/ (only free if you have IBD) will provide the values Prometheus will provide, too. I personally would not spend the $700, what big difference would this knowledge would it make?
I would also try S.Boulardii or L-Glutamate. S. Boulardii didn’t fix it for me but is always easing my symptoms.
Thank you for the great info! I haven’t heard of s. Boulardii. I learn so much from this site.
So sorry about your woes. This disease really sucks. I’m getting out of a 9 month flare now, that’s usually how long they last for me, although I didn’t get as sick this time but it’s still no fun. I had a lot less bm’s. I make my own kefir and I’m pretty sure that’s helped me a lot. I also have trouble sticking to a certain diet but I know what’s bad, caffeine, junk food, (I normally don’t eat junk food but took to eating potato chips and they effected me bad), and chocolate effects me bad when I’m in a flare. The reason the SCD diet may not help you is because of your blood type. The SCD diet is closer to the Paleo diet, which is great for type O blood. You may want to check into eating right for your blood type. Hope this helps. Best of luck to you!
Maggie, Thank you, I will check out the blood type info. You know I did look that up once a long time ago but I have to reread it.
I hope you’re feeling much better. I have had worse flares than the one I’m in now so I’m thankful for that.
It is not unknown for people to have Crohn’s and colitis. I spent money on 23andme test sort of hoping to confirm my colitis diagnosis, but their test said I had low risk. 700 bucks is quiet a bit.
The 23andme test is currently free if you have IBD.
Andy, my doc did say it is not always accurate. That’s why I’m wondering if I should even bother paying that much for it. Mind you it would be nice to know if I had colitis or crohns.
You will regret the test. Can provide some evidence, but scopes are the gold standard. Mine came back inconclusive. Even if it points in one direction you still won’t be sure.
Thanks Jake. That would really piss me off to pay money for an inconclusive result.
Hi guys, I know I haven’t written for awhile, mainly because I been busy with my new company and my UC has been tamed. I only flared once this year and have been on asacol properly for the first time and it seems to be working. I also took enema asacol to pull me out of that flare.
I was eating well, and started juicing but this last week my flare came back.
Earlier this year I had to leave a client meeting to rush to go WC. I was glad it wasn’t occupied but sad I started to go before I got to the WC. Again today, as I was pulling in to my apartment I was rushing… The story ends with a messy ending :-(
Next week I am in Amsterdam on a 2 day training course for work. I fear when I have to work in Cologne and Milan for a week respectively… Working at an exhibition and dinning clients in the evening.
Contrary to public uninformed people, this disease isn’t something that you can count on controlling. It’s not as easy as when people say ‘deal with it!!’ I wish I could. It has no rhythm of reason.
So what next?
I am an optimist Kim, we have to be, otherwise what else do we have! But sometimes it’s easy to feel down…and that’s ok.
I have no advice, I normally do, tried so many different things, I guess there is always more to try. That’s the hope, your find what your body is missing to help resolve your UC :-)
So glad you responded, I too have not been writing much in the site. Sorry you aren’t feeling super right now and I’m right there with you. It just hits me like a brick and I need to be in the bathroom right away or else…yuck.
I hate it but as you said what can we do but try to be positive? Outside of my disease I have many wonderful things that I love and they keep me going strong.
I got the test done, I found out that if your insurance doesn’t cover the test you apply for aid so instead of paying 700 for it I will pay about 200. Still a lot but whatever. So I received the results today and it concluded that I have ulcerative colitis and not crohns. Or at least that is highly likely, as the test is not 100 percent. I feel better and am relieved as I know crohns affects so much more than uc.
So this time next week it’s colonoscopy time, after that maybe envytio. Hope that I can find remission, it has been a long time. I have one or two days where I have tolerable symptoms and then suddenly a day or two where I live in the bathroom.
My doctor just asked me to have this test run with Prometheus labs. I cannot afford it either, after spending 4 days in the hospital for ulcerative colitis. That was my 5th autoimmune disease diagnoses, SLE Lupus was my first several years ago. Apparently, there are no other labs that can perform the specific IBD sqi Amoeba Antibody titer test. Like you, my insurance will not cover and I have spent more than I have due to all my immunodeficiency’s. If the test is not 100%, then I really don’t feel I want the test, especially if I am paying that much for an accurate result. Just my meds alone are $1,400 a month. I’ve been taking Uceris since being diagnosed with UC and it has really helped all of the symptoms! I just take one day at a time.