My IBD Life

IBD Q&A

Questions for fellow IBD Bloggers and/or readers!

  • Do you have Crohn’s Disease or Ulcerative Colitis?
  • What was the most embarrassing IBD related thing that has happened to you thus far?
  • How did you react when you were diagnosed with IBD?
  • When you were diagnosed did you already have an idea of what IBD was? if so were you right?
  • Whom is the most supportive person in your life?
  • Has the diagnosis changed your life?
  • Are you embarrassed to tell people that you have IBD, how long does it take you to tell people you have IBD?
  • What reactions have you had after telling people of your IBD?
  • What is  your main trigger food? (only one)
  • What is the best and worst part about having IBD?
  • Lastly ,Where was the odd’s place you had to take a shit!?

My answers!

  • Crohn’s Disease
  • Going for an extremely loud dump in a bathroom full of catty girls.
  • I was in a flog , I mean i was so sick during that time i didn’t really have a reaction ,but  I  was surprised yet relived
  • I had heard of Crohn’s before on the T.V show “Extreme makeover home addition” and a few other time but didn’t really have a clear understanding of the disease so not really.
  • the most supportive person “IBD” wise would be…Well i don’t really have a “go to” person about my IBD , therefore i would say My IBD family on the Support groups , there is always someone there to answer your questions and give much-needed understanding and support , I would erg everyone to join the Facebook support groups.
  • Yes the diagnosis has changed my life, it gave me an understanding of my symptoms and oddly enough made me a more confident person…
  • Not at all, I enjoy telling people i have IBD it gives me a chance to educate them..i wear a “Ask me about my Crohn’s disease shirt” a lot so , for me it does not take long to tell people about it , usually within the first conversation with somebody i somehow bring up the fact that i have IBD. IBD is a big part of my life so i have no reason to hide it, neither should you.
  • I get the “know it all reaction” a lot, you know the one where they say “I have heard of that before, my sister’s boyfriends brother’s friends aunts niece’s cousin has it so i know exactly how you feel..” or the one where they tell you what you should or shouldn’t be eating and/or doing, ya i rarely get a good reaction , I’m not sure what a good reaction would be maybe if they said something  like “oh I’m sorry that most be hard, I’m not sure what that is, what is IBD really about?”
  • Pork.
  • The best part about IBD is sharing my story and meting the wonderful people in the IBD family.
  • The worst part would be the pain and fatigue/knowing this is a life long pervasive disease.
  • I shit in a plastic bag once.
meme

What people must think when they hear “Crohn’s or UC”

Links:
Crohn’s & Ulcerative Colitis Support Site
Quebec IBD support group 
CCFC

Twitter: @MerandaRoben
Google Plus:+MerandaRoben

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About MerandaRoben

I am a Freelance Photographer... You can contact me by sending me a message on facebook or by email at meranda-roben@live.ca Or call the number on the business card. The best ways to contact me is by calling the number on the business card or sending me a message on facebook. I enjoying doing all kinds of photography but i would have to say street photography is my favourite. I like to photograph events and work in event and family portrait photography, if you would like me to photograph your event or do some family portraits just send me a message or give me a call . I also enjoy writing and i'm going to be working more on my journalism skills. I want to become either a photographic journalist or a documentary photographers. Feel free to check out all my photos and give me feed back. I have been living with Crohn's disease since my diagnosis in April 2012. Through my work I want to be able to bring light to Crohn’s disease and show other’s that it is very possible to live a full happy healthy successful life even with the ups and down’s of this life long disease. I plan to start writing a Monthly blog on my rise to become a professional photographer it will be in titled “Rise to Pro: One Snapshot at a time” That will hopefully begin July 22 2013. By Now most if not all of you are aware that I have a form of IBD. I have one of the two most common forms of IBD, Crohn’s disease. I have recently decided to become an IBD activist in the form of a writing blog and I guess a “in person educator” if you would. I will be discussing everything that goes into my IBD life with this blog and when I say everything I mean EVERYTHING, All the detail of which some would be to embarrassed/scared to discuss in a public form I will write about in hopes that through this I will inspire others With IBD to be more open with them selves and be confident in who they are. It is entitled “My IBD Life.
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10 Responses to My IBD Life

  1. Hope says:

    Do you have Crohn’s Disease or Ulcerative Colitis?
    UC

    What was the most embarrassing IBD related thing that has happened to you thus far?
    Several weeks ago, I was at my town’s Democratic caucus. I was helping organize for a certain candidate, but I was also running as a delegate to the state convention. In the middle of the vote, I had an unexpected accident and had to run to the bathroom to clean myself up. Later, I had to deal with a bunch of people I barely knew asking why I’d suddenly disappeared. I couldn’t exactly tell them I crapped my pants! And to add insult to injury, my disappearing act meant I lost the election.

    How did you react when you were diagnosed with IBD?
    Honestly, it was a relief to finally have a diagnosis. I’d been in the hospital 4 days at that point, with extreme diarrhea, major blood loss, and excruciating pain. I’d nearly died, and they couldn’t even tell me what was wrong. They told me C. diff. at first and had me on tons of antibiotics, but those didn’t help. So finally knowing what was wrong and knowing there was a treatment for it was a big relief.

    When you were diagnosed did you already have an idea of what IBD was? if so were you right?
    I think I’d vaguely heard of Crohn’s and knew it affected the GI system, but I had no idea how serious it was. I’d never heard of UC before I was diagnosed.

    Whom is the most supportive person in your life?
    I don’t really have anybody. Basically on my own dealing with this.

    Has the diagnosis changed your life?
    It’s had a huge impact. I can’t work anymore because I never know when I’m going to be well, so I can’t commit to anything. I’m on disability and living in poverty. My diet is SEVERELY limited because so many foods make me sick–I can’t go out to dinner with friends without interrogating the chef about every ingredient, so I don’t go out much. Some days I can’t leave the house because I can’t be far from my toilet, and even on the less severe GI days, I have zero energy. When I do go out, I have to carry spare underwear in case I have an accident. I’m paranoid about getting sick because I’m on immunosuppressants. My meds also give me near-constant nausea, and I’ve lost a lot of my hair. I see my gastroenterologist and the local ER staff more than I see my friends and my boyfriend.

    Are you embarrassed to tell people that you have IBD, how long does it take you to tell people you have IBD?
    Most of the people I’ve met since my diagnosis have been people involved with political campaigns I’ve worked for, so they’ve had no need to know about my medical condition. I have told bosses that I’m dealing with a “serious chronic illness,” and I told one boss a few details about the UC. But in general I don’t talk much about it–not because I’m embarrassed but because it just isn’t relevant in the context of the relationship.

    What reactions have you had after telling people of your IBD?
    The one I get most is “But you don’t look sick!” Well, no, if you could see the inside of my colon, we’d have some bigger concerns. Most chronic illnesses are not visible. It drives me crazy, that invalidation.

    The one that bothers me most, though, is the people who tell me at great length about the miracle cure that fixed their great-aunt’s best friend’s hairdresser’s problem. Believe me, my diet is already stricter than your miracle diet, and I’ve probably tried your magic supplements. Thinking positive is not going to cure me either.

    What is your main trigger food? (only one)
    Only one? Geez, there are SO many! I jokingly tell people I’m allergic to food in general. But the single worst is probably corn, which sucks because it’s in EVERYTHING in the US.

    What is the best and worst part about having IBD?
    There’s really no good part. The worst for me is the hopelessness. This is never going to go away. There is no cure, and I’m never going to get better. The drugs have so many side effects I sometimes wonder if they’re worth it. I’m not as sick as I was when I first flared, but I’ve never been able to get into remission, and I’ve almost exhausted all the available medications. It feels so unfair.

    Lastly, where was the oddest place you had to take a shit!?
    I don’t think I’ve gone in any really bizarre places, but there are many times I’ve bought something at a store or restaurant so I could use their bathroom. But if it’s bad enough that I’d have to go someplace really crazy, I just stay home near my toilet.

    Like

    • MerandaRoben says:

      Sorry to hear your having such a hard time :/ , Are you part of the facebook support groups? they help me a lot! i am also dealing with the disease alone ,i have family support but they don’t understand the disease or impact on life it has. I know having a positive out look on life wont cure any of us but it helps me stay focused on the good in life ,you know? trust me i’m not always positive i mean who could be!? and yes omg the ” miracle cure” people drive me up a wall!

      Like

  2. MerandaRoben says:

    check out “OSTOMISM NOT PESSIMISM™” answers and the rest of her blog here!!
    http://ostomismnotpessimism.wordpress.com/2014/04/07/my-ibd-quiz-answers/comment-page-1/#comment-5

    Like

  3. My doctors really aren’t sure as to whether I have UC or Crohn’s yet because of how my IBD is presenting itself. My inflammation is patchy but there isn’t any in my small bowel that they know of. I also don’t have granulomas. So the pathology report from my colonoscopy said it was Crohn’s but the blood work I got done said UC. So who the hell knows what it is.

    Thinking that all I need to do is pass gas and next thing I know blood and mucus is running down my leg.

    I was a little bummed out. It sucks that there’s not a cure for IBD. I have gotten a little depressed at times but I keep trying to move forward with my life.

    Yeah I had a little bit of an idea of what it was. I had been doing some research as to what could be going on with me once my doctor told me that my first colonoscopy from a few years ago showed possible signs of either UC or Crohn’s.

    It isn’t really just one person being really supportive, everyone has. But my boyfriend was super supportive when I was in the hospital. He was there everyday to see me.

    It has a little. There are times I feel like it’s controlling my life because I can’t always control my bowels. I’m still working on getting my life back to ‘normal’.

    I am a little embarrassed to tell people about my IBD at times. Not everyone knows what it is and then they want to know how it affects you. It can be hard to tell people that you get the bloody shits and pass mucus. Not a whole lot of people want to hear about that. And sometimes I don’t tell anyone at all that I have it and others I told right away that I did. It really depends on the vibes I get from that person.

    What’s Ulcerative Colitis?
    I’m sorry.
    What does it do to you?
    Be positive! Really? I’d like you to be positive all the time in my shoes.
    You need to take better care of yourself. That one right there is probably the fastest way to piss me off. If this was really that simple don’t you think I’d be doing it already?!

    Coffee

    I have yet to figure out a best part about it. I’m not sure I ever will. And the worst part about it so far is the fact that I’ve been hospitalized by a medication that was supposed to help with the inflammation and it took 10L of IV fluids to re-hydrate me. I’m now several thousand dollars in debt because of that hospital stay. Oh and there’s no cure.

    The oddest place I had to take a shit was a rest stop that was a couple of miles from my old apartment. I couldn’t hold it anymore; everything was forcing its way out. And I had one hell of a time finding a stall that had a toilet seat. It’s not something you want to be dealing with while your body is in the process of making you shit yourself.

    Like

    • MerandaRoben says:

      I hope they figure out which one you have soon, that must be frustrating for you!

      Oh yes the “You need to take better care of yourself.” or something like “you need to eat healthier” people need to pick there words wiser,like you said, if it were that easy there wouldn’t be sooo many people suffering.

      I haven’t had a cup of coffee in years! i miss it.

      Keep pushing you’ll make it!! your doing great job already. 🙂
      Hopefully they find the right diagnosis and treatment for you ASAP.

      Oh and how long have you had IBD?

      Like

  4. Pingback: IBD Q&A | Motorcycles, Books & Fructose

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