New to UC: Learning and Making Mistakes – Alison’s Story

Introduction to Alison:
New to the world of Ulcerative colitis. Diagnosed 3 weeks ago. 24 years old, one semester away from my MBA, works in college athletics

Alison’s Colitis Story:

It all started when I noticed a little bit of blood in the bowl, “Probably just hemorrhoids, no reason to freak out,” I told myself. Three months later (shame on me for waiting so long) I was in the dining hall on campus crying over my mashed potatoes to my fellow Graduate Assistants about how I couldn’t eat and didn’t want to eat because it would hurt later. I was tired of the urgency, frequency, bloody mucussy crampy poos and, quite frankly, I was starting to get bored of checking Facebook every 30 minutes on my phone as I raced to nearest stall. I finally made an appointment with a general surgeon for a colonoscopy.

After making the 3 hour drive home on a yet again empty stomach and going under the scope, my doctor came into recovery showing me a lovely picture of my insides.

“You have Ulcerative Colitis,” he said.

“I’m giving you a perscription for Asacol, take 2 400mg tablets 3 times a day.”

That’s it. I filled the perscription and started my regimen right away. A few days later, I was back to eating whatever I wanted, was passing solid brown stools and life was good. Until I ran out of the $167 15 day supply of pills.

You see, I ordered my next supply from my insurance through a mail order…needless to say, they didn’t ship on time and I went a week without the meds. During that week, I was back to my stupidly self perscribed not eating during the day schedule. Because of the nature of my job, and I’m sure others have this experience as well, it’s very difficult to figure out when/what I can eat and not have a flare up in the middle of taking stats at a basketball game. I don’t think our head coach would be too psyched if I called an emergency diarreha time out in the middle of a big game. So, I stopped eating completely during the day and waited until I got back to my apartment at night. Soon enough however, even my not eating diet proved too much for my colon to handle.

This past Tuesday, after a game, I started to have an awful flare up. It’s now Friday afternoon. I’m still laying in bed, running to the bathroom and yes, checking Facebook on my phone, every 30 mins or so. Lesson learned? DON’T STOP TAKING THE MEDICINE. EVER. Since Tuesday I have been in a lot of pain, have been going at least 20 times a day, haven’t been able to sleep due to the newfound pain in my upper stomach below my sternum; “Probably because you’re hungry stupid,” I tell myself. Back to seeing a lot of blood…joy. I did restart the Asacol with my first full dose on Tuesday. I’m waiting for it to take action because in all honesty, this isn’t fun and people don’t update their Facebook statuses enough to keep me occupied that long.

I have my last class of the semester this Monday and a final on Tuesday. I hope I’m at least not in so much pain then. I’m supposed to fly from New York to Florida to visit my dad on Thursday…that may require an extra set of shorts if things don’t turn around shortly.

Now that you know my story, I think it’s important you also know how much finding this site meant to me. Everything written in here are things I’ve wanted to share yet have been too embarrassed to. It’s helpful to have a collection of people who understand. Because I’m so new to this disease and am still learning (obviously), it’s comforting to know I have some place to turn to. Luckily my professors and bosses have been understanding, but I need to figure out how to keep this under control so I’m not missing class/work all the time and more importantly so I can not be afraid to eat during the day when I am at work/class. I have an appointment with a Gastro after the holidays back home. Hopefullly he can help.

Written by Alison

Submitted in the Colitis Venting Area




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8 Responses to New to UC: Learning and Making Mistakes – Alison’s Story

  1. George in Napa December 12, 2011 at 7:33 pm #

    HI Alison,
    I understand what you mean by not wanting to eat because of the pain that it will cause later. During my worst flares about a year ago, all I was eating was the most strained baby food that Gerber makes, for about a month. I figured that the soft stuff wouldn’t hurt me so much. Well the pain didn’t go away but my weight sure did. I am a guy who has weighed 163 lbs. most of his adult life……. I dropped to 147 lbs. in about 4 weeks. I was going downhill fast and decided to find a doctor who could help me.. This was a good idea because doc got me on some meds that helped me get past the pain and I was able to start eating solid food again. I am slowly trying to work my way back to 160 lbs.
    I also found this site recently…. about a week ago. Finding a place like this where we can share or vent has meant a lot to me also. I tip my 49ers cap to Adam for creating this for us. (>:

    George in Napa

  2. Rebeka
    Rebeka December 12, 2011 at 10:16 pm #

    Welcome, Alison.
    I hope you start feeling much better soon. Good luck with your finals! I am also 24, just diagnosed two months ago. I also think the meds help a lot. I didnt get mine for two days once and was in a miserable state. You mentioned the price too. I hope your insurance covers it? I had to go through a patient support programm to get my pills, survived on samples for over a month. Before diagnosis I also stopped eating. Then I lost a lot of weight and ended up in the hospital, severly dehydrated. You have to eat! I know it’s scary, but try it and find out what food actually hurts you and what doesn’t. I started with chicken soup, and extremely long cooked rice with chicken and ginger. Then rice and other steamed veggies… For a couple weeks I still went about ten times a day, then it went down from there.
    Like you, I had a great professor. He let me make up for all the work I missed and submit late. If you have to tell people, they are usually understanding, but I know it is embarrassing to talk about it unless it’s family, or here, where people go through similar stuff. I’m glad you found the site too! People are really helpful in answering questions and cheering you on! And of course it’s just nice to know you’re not alone.
    Good luck to you, hope you can enjoy your holidays!
    Let us know how things are going!
    Rebeka

  3. Blake December 12, 2011 at 11:59 pm #

    Hey Alison. Rebeka is right, people usually are very caring when you are honest with them and tell them what you’re going through. I’ve been very honest with my employer, co-workers, friends and family. It definately helps and is a big weight off your shoulders. I used to think people thought I was a serial masturbator or something with how much time I would spend in the bathroom making funny noises. Also, don’t be afraid to wear a diaper at the baseball games if you think that will make you feel better. No shame! Also, you need to eat, not eating is only a short term solution, but if you keep that up, bad things will happen. You’re body needs nutrients and calories more than ever when you’re in a flare. This disease sucks! I hope you get some relief soon.

    Blake

  4. Vicki Thomas December 13, 2011 at 8:34 am #

    HI Allison
    The best thing you can do is be open and honest with others about your ulcerative colitis. You’ll be surprised to discover that most people can empathize with you – it seems that most people these days know someone who has UC or Crohn’s. It can be embarrasing – but speaking up is the best way to get the help you need.
    I had a very bad flare last year and after the doctor telling me my choices were Imuran or having my colon removed – I went for the Imuran. Well the Imuran ended up not working – but good news – I’ve been on Asacol since April and I’m doing great. I take two 400mg pills twice a day. As a rule I try to avoid dairy and gluten – these two seem to cause me some discomfort – but if I want cake – I eat it.
    When I was very ill and in the hospital I ate clear chicken broth and Melba toasts with jam. Not the most thrilling but it was something. It wasn’t until I was symptom-free for three weeks that I was able to add in cooked vegetables and meat. I can now eat pretty much anything I want.
    I’m sure you’re feeling pretty low right now – but just trust us that things will get better!
    Please let us know how you’re doing.
    take care,
    vicki

  5. Charis December 13, 2011 at 10:57 am #

    Alison,

    I hope you get back to feeling like your old self again soon. The whole not eating so you don’t get sick thing is neither fun nor healthy. I also waited three months before I got a colonoscopy. It’s one of those situations where you write your symptoms off to something (anything!) else and just hope it goes away. I’m glad you finally went and got a diagnosis and I’m glad you found this group. It was a great help to me too when I was a newbie to UC.

    Thanks for sharing your story – keep us updated. :)

    Charis

  6. OrdinaryWorldWhereRU December 13, 2011 at 4:52 pm #

    Hi,
    I would like to echo what others have written regarding being honest about the disease. It helps with the stress not to worry about that anymore. Do not stop eating. That will add to your issues. Based on my experience, the pain in your stomach is not because it is empty, that is the disease. Keep us posted.

  7. Sher December 13, 2011 at 5:35 pm #

    Hi Alison,

    Wow, I can’t believe how many of us were diagnosed in our early 20’s … I just wonder what the correlation is. I wish more research was being done. I also find if I cut gluten out I feel better, give it a few days… cut out all bread, flour, wheat etc… I just ate brown rice for a while. You have to read labels. See if this helps. I also went w/out eating and ended up in the hospital, even though I wasn’t eating I was still losing blood. If you need to take some immodium before games and flights etc. I get it prescribed, lomotil. I also know the pain of having to pay so much for meds. It sucks because UC is considered a pre-existing condition when I applied for an ins. policy I got denied… but you must have ins. with this disease or you will end up in trouble, trust me!

    Hope this helps and keep on pushing on!

  8. Alison December 14, 2011 at 5:55 pm #

    Thank you all so much for your advice and support! I am feeling a little bit better but still going more than I should and still have blood. But I’m eating which is a plus. I’ve thought about trying to cut gluten out of my diet for awhile and see if that changes anything. Your words of wisdom seem to encourage that approach. I truly appreciate all of you for your quick responses and positive outlook. This isn’t an easy disease to handle but having a support system of people who understand make it that much easier.

    Thank you all again and good luck with your personal battles.

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