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Dealing with UC – How I Do It

here's Alanna!

here’s Alanna!

Hi! My name’s Alanna and I’m 20 years old. I’m currently a Nursing major at my local college and hope to work in pediatric oncology. I was diagnosed with UC when I was 14 years old and I’ve been in remission for the past few years! I’m doing my best to improve my diet with all the struggles that come with UC.

Some more background:

I’m from New Jersey but love to travel and have a passport that’s begging to be used! I’m hoping to join the Peace Corp after I get my degree, but realize that’ll be a struggle since I have UC. If all else fails, I plan to do as many missions trips as possible in as many countries as I can!

UC Symptoms:

I’ve been in remission for the past few years with the occasional flare up that usually involves some stomach pain or more frequent bathroom trips. Overall, I’ve been doing okay!

Alanna’s Colitis Story:

I was diagnosed with UC when I was 14. It was the summer right after my freshman year of high school. I noticed the weight loss first. I dropped over 10 pounds within 2 weeks, which wasn’t like me. I talked to my pediatrician at the time about it and he just blew it off as a hormonal thing, or as something that had to do with my eating habits. Overall, I was told to not worry about it.

A few months after that I noticed the bloody stool. I tried to blow that off as something to do with a virus or some other minor illness that would eventually go away. Keep in mind I was 14 at the time so I didn’t really know any better. A few weeks after that came the intense stomach pain. I remember laying in the fetal position and crying all night long on the bathroom floor, because there wasn’t any point to laying in my bed when I’d be getting up every 15 minutes anyway. At the point I went and saw the doctor again. I worked at an animal shelter at the time so my doctor told me it could be a virus that I’d caught from one of the animals there. I was given some medicine and told to come back in two weeks.

During that time, I went on the vacation from hell to sunny (and humid) Florida. This was when my worst point started. The medicine to help my “virus” made things so much worse. I fainted quite a few times on that trip and I couldn’t keep anything down other then Gatorade and pretzel sticks. When I went back to the doctor’s at the end of that two weeks, I had dropped from 115 lbs to 93. My doctor finally referred me to a specialist at Children’s Hospital that handled gastrointestinal problems.

I was subjected to more tests and scans for weeks with still no diagnoses. It was during this time that I noticed my hair began falling out, as well. After realizing what a terrible state my health was in, I was admitted into the hospital. At this point it was towards the end of the summer. Because of how long I was admitted, the doctor’s weren’t sure if I’d be able to start off my school year when everyone else did. After having an endoscopy I was told,

Well, we think it’s IBD. We can’t be sure if it’s Crohn’s or UC, but we’re pretty sure it’s one of them.

After that came the medications. I went from steroids, to Asacol, to more steroids, all while being forced to drink these disgusting nutrition shakes to try and help me gain weight. Nothing was helping. There was talks of IV medication and having to insert a tube down my throat and all kinds of crazy procedures. Eventually I was put on Azathioprine (better known as Imuran). At that point there wasn’t a lot known about the medication, but I finally started to see some improvement.

I was released from the hospital (in time for school) and tried to adjust to being a teenager with this crazy diagnosis. Down the road, I was officially diagnosed with Ulcerative Colitis. Even though I didn’t have any ulcers when they did my endoscopy, they said that because my inflammation affected so many different organs, UC was the likely culprit. I’ve been in remission for about 4 years now with the occasional flare up due to a passing sickness or cheating and eating foods I know my body can’t handle. I haven’t had any negative side effects to the Imuran, but I’m part of several research studies to keep a close eye on how it effects me (and may effect others), as well as studies to help us gain further knowledge about the disease itself.

At this point in my life I’m trying to eat healthier, which is proving difficult with the limitations on the food I can eat. Does anyone have any tips for eating healthy while dealing with UC?

Medications and Supplement Info:

Imuran seems to be the only medication that has worked for me. I also take different types of vitamins daily to help with the other side effects of the disease. Currently I’m taking a multi-vitamin, Vitamin D, Calcium, Biotin, and fish oil supplements.

written by Alanna L

submitted in the colitis venting area




imuran

6 Responses to Dealing with UC – How I Do It

  1. Adam
    Adam December 22, 2014 at 1:53 pm #

    Hey Alanna,

    Good luck with getting the passport filled up!!!! I’m sure you can make that happen. It might at times seem out of reach to travel with UC, but it’s for sure possible. There’s literally thousands and thousands of UC’ers cruising around the globe every day of the year, so why not you too!

    As for eating healthy, that’s a great goal/thing to be interested in. I’m big into diet myself for managing this disease, and here are some basic ideas to think about from my perspective:

    Eliminate soft drinks, or any other drinks that have high fructose corn syrup. Coffee…well, I’m just about 4 months now without any. And I think I’m going to try and cruise through 2015 without coffee too.(bez kava priští rok-as they say in Czech)

    Breads…try and limit or cut them out if you can. I’ve gone without that stuff for the better of 5 years and happy about it.

    There’s more to this thinking as its all part of the SCD diet ideas. I started a page on the site about the diet long ago, here is the link if you want to read more about what myself and many others here do in terms of diet stuff: http://www.ihaveuc.com/the-diet

    Best to you no matter how you move forward, and keep the traveling dream alive:)))

    –Adam

    • Alanna L
      Alanna L December 24, 2014 at 9:37 pm #

      Hello Adam!
      Thank you for your response! Soda was actually the first thing I noticed that affected my stomach so that has been long gone from my diet! I’ve been considering your suggestion about cutting out bread, but I don’t know if I would really be able to do it. It plays a huge role in my daily meals now, but I am considering it! I have also been looking into the “diet” section that you posted and that, along with some of the recipes you’ve posted have really motivated me to stay on top of this! I strongly believe that this disease can be controlled by diet over medication and would love to be able to stop taking mine someday, once my diet is under control. Thanks again for your suggestions and happy holidays!

      Alanna

  2. Diane D
    Diane December 24, 2014 at 9:18 am #

    HI Alanna,

    I was wondering what other organs were affected by your colits. This has been a lifelong path for me and I have seen a lot of pain. I try to work with the impressions and how I carry them so that my organs aren’t affected. I can’t emphasize diet enough. Along with the SCD diet and “The Vicious Cycle” , paleo diets and the “Against All Grains” cookbook; I highly recommend the work of David Perlmutter, MD and “Grain Brain” as well as “The Better Brain Book” for your generation to get a handle on this epidemic. The brain and digestive system is so connected and I am very familiar with the disorders of both.

    Best to you and your future!

    Diane

    • Alanna L
      Alanna L December 24, 2014 at 9:27 pm #

      Hello and happy holidays!
      My colitis affects my stomach, colon, and small and large intestines. Thank you so much for recommending! I’ve tried paleo once in the past and it caused me to drop more weight than this disease has already caused me to. Maybe I’m just not doing it right. Regardless, I do plan on looking into these other diets. I’ve already cut out soda and am seriously considering Adam’s suggestion of cutting out bread. (The coffee though, is another story. NO WAY! hahah) I’ll be sure to report back on what I’ve decided upon for the new year and how it’s progressing and affecting my UC.

      Hope you’re well!

      Alanna

  3. Stephanie P
    Stephanie December 26, 2014 at 1:36 am #

    Hi Alanna,

    Your story totally resonated with me. I also wanted to join the Peace Corps and travel all over, I looked into missionary work as well…. After college I went to Spain to teach English and got sick, eventually I was diagnosed with UC. During that time I was submitting my medical paperwork for the Peace Corps. I called to tell them about the change in my health, and they told me I couldn’t work with them (I think you have to be flare-free for 5 years, at least that was the last time I checked back in 2011.)

    I don’t think I realized the depth of UC and didn’t fully understand it… I got a job in South Korea and didn’t even think about my health… Turns out South Korea has an amazing health care program. UC is considered a rare disease, so I only pay 10% of everything (doctor visit, prescriptions, Remicade, etc.). Korea is not for every one, but I just want to show you that you are not stuck, it’s just a bit harder for us now to find a country with great health care that will take of you.

    Wish you the best :)

    • Alanna L
      Alanna L January 12, 2015 at 11:58 am #

      Stephanie,
      You have no idea how great it makes me feel to hear you say that you’ve still managed to see so much of the world! I think that’s amazing and I hope eventually I’ll be able to do the same (with a whole lot more research, that is).
      Korea is never a place I really considered much, even though the beaches are apparently stunning. Maybe I’ll have to look more into that and give it more of a shot this time around. Thank you for your kind words and best of luck with everything!

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