Dancer in Distress

Lacey the Dancer with colitis

Intro:

Lacey was diagnosed the same week as her 18th birthday at Children’s Hospital of Pittsburgh. She’s determined to keep living the life she wants, without UC stopping her.

Some more about Lacey:

I am a ballet dancer training to become a professional. This past summer I spent 5 weeks dancing in Nashville, TN and for the next 4 years I will be majoring in dance at Mercyhurst University. My last performance at my home studio was performed during my initial flare(and I wasn’t diagnosed at that point). I can’t even describe the amount of pain I was in but hey, the show must go on! Let me just say that despite my illness I ROCKED ‘Flames of Paris’.

Symptoms Right Now:

I am not fully in remission yet but I am well on my way. I haven’t bled since my hospital visit but I’m still slightly anemic. My bathroom visits have become less frequent and a little more pleasant.

Dancer in Distress

Before my diagnosis I experienced about a month and a half of bleeding and frequent bathroom visits and before that most of my senior year of high school was spent being sick with colds and stomach bugs. I’ve also had Acid Re flux since I was about 10, and come to think of it probably passed off some of the pain from the UC as just another re flux flare. Once the bleeding began I figured it was something more serious. I went through countless visits to the ER and was sent away every time, even though I was still in an incredible amount of pain and bleeding a lot. At that time I was in the middle of rehearsals for a ballet performance and holding your tummy muscles in while dancing was very difficult and probably the most painful thing I have ever felt. I consider myself a little lucky, I went to the GI doctor to see if he could shed some light on my situation and he hospitalized me immediately and within 5 days I finally had a diagnosis and medications to help me get better. It was such a relief to finally know what was going on with my body and an even greater relief to find out that my colitis is only mild( I can only imagine how horrible it must be to have a severe case). UC has definitely added to the obstacles that were already in place in my journey to becoming a professional ballet dancer but I’m a tough cookie and i firmly believe that anything is possible. My family is incredibly supportive and very helpful, especially with two pharmacists in the family. My doctor is very knowledgeable and cares a great deal about how I feel. The only thing that concerns me is that he doesn’t seem very open to the idea that food can effect UC. Personally, I think it does and from reading other people’s stories it seems like that’s the case.

Medications / Treatments Currently:

So, right now I am taking balsalazide disodium(3 pills 3 times a day) and also calcium + D, a multivitamin, iron supplements, and a probiotic. So far the maintenance meds seem to be helping a lot, and especially the probiotic. Right after I was released from the hospital I was put on a steroid taper that lasted two months. Prednisone sucks. I gained weight all over(which was very noticeable in a leotard and tights), and I had a lot of trouble with acne. And when it came to mood swings I went from being sweet and fun to the incredible hulk:/ I plan on trying as hard as I can to hopefully never need Prednisone again. I’ve also noticed that certain foods can effect UC. I typically feel better if my meal includes a decent serving of meat, especially steak or chicken. I haven’t had any issues with bread so far but i don’t feel very well after I eat crackers. Things that are overly sweet, like super sugary cake icing, seem to be a big no no with me and so do too many apples. I’m still new at this though but I’m trying! Any advice would be extremely appreciated!

written by Lacey

submitted in the colitis venting area

5 Responses to Dancer in Distress

  1. Adam August 27, 2014 at 12:08 am #

    For sure the most amazing dancing picture this site has ever seen! And best of luck to you with your dancing career in the future.

    ALso, good job on getting a diagnosis without going on for years and years with no word on what the troubles are coming from. That’s a big first step.

    I’m a big believer in the thinking that what we put in our mouths does affect our UC, and even though many GI docs in the western world don’t feel the same, I think its safe to say that finally that tide is starting to change. So if you are figuring out what works well for your UC and what often causes issues in terms of food…That’s GREAT news, and another big congrats to you.

    Keep your dreams alive, and thanks so much for sharing.

    -Adam

  2. Bev August 27, 2014 at 2:02 pm #

    Hi Lacey,

    You really nailed it…UC is like a swinging pendulum…I can eat apples sometimes…and then a month later, I can’t! How is a person ever supposed to figure it all out?

    Another thing that you mentioned was that the probiotic ‘seems’ to be helping you
    most of all. Exactly! After 15 years on meds, I realized that they were in fact NOT helping me at all. I have been all natural for 3 or 4 years now (I’ve lost track actually) and I am doing a lot better (including remission? since I stopped taking meds.

    Doctors still go through the same protocol every time a new person is diagnosed and I think that they HAVE to, because that is how they are trained and that is their job…HOWEVER…meds really do not treat UC at all. We have to take our health into our own hands. Only we can treat ourselves because we are all different in our UC. It takes work and a lot of trial and error…but it is totally possible to ‘cure’ yourself!

    The only med that you cannot just STOP abruptly is prednisone…never do that…you must taper off of that one.

    Cheers, and welcome to this wonderful site!

    :)

  3. Angela September 17, 2014 at 7:51 am #

    Hi Lacey,

    My daughter’s story is so similar to yours. She’s a college freshman, a ballet dancer (not majoring in dance, though), and has attended many intensives since she was old enough to spend summers away. She was also diagnosed over the summer after symptoms began in April. Prior to that, she had some lactose-intolerance, but that’s about all.

    Now that you’ve been at college for a little over a month, how are you doing with your diet and the overall management of your illness?

    My daughter is trying to adhere to the FODMAP plan. Rx’s are Lialda, Canasa, and a Probiotic- Healthy Trinity by Natren.

    I hope you’re doing well!

  4. Lacey G
    Lacey September 18, 2014 at 3:37 pm #

    Hi, Angela!

    So sorry to hear that your daughter was diagnosed too, but we’re both in the exact same boat so we can get through it together:)

    So far living with UC and being at college hasn’t been to difficult. I have to admit that as all the work piles on and my dance schedule gets heavier I do have a harder time to remember to take my medicine. I’m currently taking 3 Balsalazide Disodium pills 3 times a day but sometimes i don’t have time to think about taking the second or third dose because I’ve got twenty other things on my mind or I’m running from class to class. So remembering to take all my medicine and vitamins is probably the most challenging part of being at college.

    Regarding food, I have always been a very healthy eater, I’m sure you daughter is too considering her dance background. The most important thing with food, at least for me, is eating a lot of protein. I always feel much better after eating a big chicken breast or cheeseburger or any kind of lean protein. The things that I definitely try to stay very far away from are the super greasy, fatty, salty, (Yummy) things, like pizza or fried chicken, french fries, etc. Thankfully my school has a lot of options so I’m not as tempted to eat those kinds of foods. The greasier the food the worse I feel, So I found that staying away from the cafeteria junk food is the safest way to go. And if your daughter really craves pizza one night (I know I have) I suggest ordering it from Pizza Hut or some other place and only every once and a while. I also drink a lot of cranberry juice and eat a lot of bananas. Pineapples also really seem to help. I try not to eat to many apples because they don’t always agree.
    Green leafy veggies, like spinach, are also great because they help boost the iron levels, which is especially good if you’re anemic like I am.

    Another thing is actually eating less than normal. Some days your colon just needs a break especially if you’re having a rougher day.

    Good Luck to your daughter!! I’m always available to chat! :)

  5. Angela September 22, 2014 at 9:50 am #

    Hi Lacey,

    I hope that my daughter will check out this support group when she has some time! There are so many similarities– you are definitely not alone in this.

    My daughter uses the alarm on her phone to help remind her of when to take her meds.

    The diet that was recommended by her Gastroenterologist is the “FODMAP” diet. She is trying to stick to this as much as possible. She hasn’t looked into Adam’s “Specific Carbo Diet…” but I’m sure she will if she isn’t finding relief with FODMAP.

    Btw, you mention that apples don’t agree with you. My daughter loves apples and rarely would a day go by that she didn’t have one or more. Apples are high in FODMAPS, so she’s been avoiding them now :( But thankfully, there are a lot of other fruits that are tolerable.

    I’ll try to add a link to the basic FODMAP chart:

    http://media-cache-ec0.pinimg.com/236x/25/47/d8/2547d891ddc6695f6f718f7064a4d6b8.jpg

    Smaller portions and lean protein are also helpful to her.

    Have a wonderful week and I hope you continue feeling well!!

    Angela

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No matter what, colitis flares don't last forever, don't forget it:)