My IBD Life

The top three annoying things:


This is a very broad title ” The top three annoying things” it could refer to so much,people,pain,sickness. medication, sleep…LIFE!  however in this case it shall refer to My crohn’s disease.

…”right yes that Is much less broad of a category…”

I am going to attempt to pick the three most annoying things in my IBD life thus far, not the most life altering things but the most “omg really things” the things that make me feel frustrated or pissed about living with IBD,

LET US BEGIN!

Number 1:

URGENCY.
OMG, urgency when you rush to the bathroom all day and nothing happens , when you feel like your about to crap you pants get there and nothing happens, when you feel an intense pressure AND NOTHING HAPPENS!
Fighting urgency can be a tricky thing , it is very hard to tell if it is just urgency or the real thing and trust me you don’t want to make the mistake of picking “its just urgency” and being wrong!
It is such a waste of time and stress and is definitely on my list of most annoying things.

Number 2:

Stress diarrhea,
The good old Stress diarrhea, when you are already freaking out about something and BOOM the diarrhea hits, Now not only do you have to worry about what ever it was you where initially stressed about but your throw the diarrhea into the whole annoying mix! which i turn makes you more stressed!! it is a never-ending annoying cycle!
Some people say that stress and anxiety have nothing to do with IBD but i indeed believe it does and feel most of you would agree.yes?  I do not think it is the cause nor do i think it us the main contributor to IBD but i does play a part.

I put a poll up on the FB ( Crohn’s & Ulcerative Colitis Support Site ) asking:

Do you think stress plays a roll in IBD more specifically in getting diarrhea? here are the results as of 7:00pm 4/25/2014 “in chart form”
Image 

Number 3:

Know it all’s

In general i find know it all type personalities annoying, when it comes to people who do not have IBD or are not a doctor trying to tell me what i should or should or shouldn’t be doing drives me insane , seriously YOU HAVE KNOW IDEA WHAT YOUR TALKING ABOUT!
Trying to tell me to follow a diet you “heard” of one time in your life will not help me , trying to tell me to eat more will not help me , trying to tell me to sleep more will not happen and trying to tell me to take flipping tums will indeed piss me off
TUMS ARE SO USELESS!!
Lately I have found that i have a very low tolerance for people trying to give me advise when they have no idea what they are talking about it seems to me that everyone thinks they know what we go though day in and day out because they may have had food poisoning once like WTF are you talking about!?!?!?
They think we have some sort of stomach flu or that we are too lazy to try a new diet or that we are brain washed into thinking we are sick or that we are faking it, you don’t see us trying and trying to tell a “healthy normal person” how to live there life, you know why? because we are not healthy normal people therefore i have know idea how a diet helped you get more healthy and frankly don’t really care, the last thing i want to hear when i am in a flare is a “healthy normal person” say well this diet really worked for me you should try it…NO!!! F#UCK YOU!
…no that’s not nice
…I get that they are trying to help i really do but honestly it’s not helpful it makes me not want to share how i really feel, which sucks, i don’t mind, a really do like sharing my experiences with others but when it comes down to having to have an argument with a thick-headed person i will give up, which in the long run wont help any of us..they will keep believing what they believe (which is wrong) they will never learn that what they are saying is actually hurtful to us but i don’t know what to say to someone whom is stuck in one mind of thinking…

What are your top three most annoying things, please share!

Please do participate in the awareness video , follow this link for the info!
WE HAVE IBD

Links:
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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19 Responses to My IBD Life

  1. jojocrabb says:

    currently in the urgency & nothing stage. quite the ordeal for any situation when the most ideal (cleanest) bathroom is the furthest away. you feel like you’ve walked there for nothing. better than diarrhea? eh. not by much.

    Like

  2. Kristie says:

    My top 3:
    1. Intimacy issues. I mean who can feel sexy living with this shitty disease (pun intended)?
    2. Depression. It makes me feel like a hormonal teenage girl.
    3. Isolation. I have lost so many friends bc I am just not able to get out and do things like “normal” people.

    Like

  3. People do seem to have a hard time with just sticking with a supportive role instead of trying to fix something the know very little about.

    Like

  4. Hope says:

    Urgency, oh god yes. I’m a political organizer, so my job is unpredictable. Sudden bathroom trips are often inconvenient or impossible. This past week during a phone bank, while talking to a really enthusiastic potential volunteer, my colon was like, “OHAI BATHROOM TIME NOW!” So mid-conversation, I ran into the bathroom and had to carry on a conversation with this man without letting him realize I was having explosive diarrhea.

    And then there was the time a couple months ago when I was at my town caucus, running as a delegate to the state nominating convention. You can’t leave the room during the voting, and I had an accident. Then we had to have THREE run-off votes, while I’m sitting in my own crap and hoping no one can smell it. I finally ran to the bathroom to clean up and change when they were electing the alternates, and then I had to BS my way through all the “Where’d you disappear to all of a sudden?” from people I barely know.

    And unsolicited advice…I just have NO tolerance for that. Luckily I have awesome people in my life who don’t pull that shit on me, but it does happen occasionally when someone I don’t know well finds out about my illness. I just don’t give a damn anymore, and I will turn on my Southern-girl charm and say, very sweetly, “Oh, you never told me you went to med school! Where’d you do your residency? You know, my gastroenterologist’s office needs to hire another doctor; you should send them your resume!” Shuts them up every time.

    My number three annoyance would have to be the difficulty of getting medical treatment. I live in a small town in a mostly rural area. We have one GI practice in town. My doctor and his NP are both AWESOME, but it takes ages to get an appointment. So when I flare, I end up in the ER, where all they do is give me fluids, Zofran, and morphine or Dilaudid. I usually get a lecture on how I shouldn’t use the ER for pain management, and then they tell me to see my gastroenterologist. Even though they know I can’t get an appointment for 6 weeks.

    And there just aren’t enough treatment options. I’m just about to come up on the one year anniversary of my diagnosis, and I’m already running out of options. I’m not nearly as sick as I was at first, but my colonoscopy last month still showed mild-moderate inflammation, and I’m still having accidents. I’ve been through the 5-ASA’s, the steroids, 6-MP, and biologics. I’ve modified my diet extensively–to the point where it’s quicker to list the few foods I can safely eat than to list the ones I can’t. I’m not deathly ill anymore, but I’ve never gotten into remission. There just aren’t enough things to try for us.

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    • MerandaRoben says:

      omg explosive diarrhea and on the phone with a client , i would die!
      I have never had a big accident in public **knock on wood** , i mean there as been so “leakage” but nothing noticeable i don’t know what i would do

      Loving the Southern-girl charm , i’ll try that next time!

      and I feel you, where i live now isn’t too to bad there are about 3 or 4 GI’s that i know of at my hospital but it does still take awhile for a appointment,

      Also I would love for you to participate in my IBD awareness video!

      Like

      • Hope says:

        It kind of shocks me how good I am at carrying on in the face of that kind of problem. I’m one of those people who, in a crisis, I’m totally calm and in control, and then later, I have a meltdown about it. I mean, when I had my first flare and I was in the ER with a crash cart next to my bed because my BP was so low from blood loss and dehydration, I was joking with the NP while she was doing a rectal exam. Who does that?! (Well, okay, me, apparently.) It wasn’t until I was out of the hospital that the reality that I nearly died hit me.

        It’s bizarre, but the most embarrassing thing for me with my job and my illness is events where there is food. People offer me food I can’t eat or ask me why I’m not eating, and for some reason I get really embarrassed. I think it’s because in the South, where I grew up, it’s ride to turn down an offer of food. You’re at least supposed to eat a little so the host doesn’t feel like you’re turning down their hospitality. Crapping my pants in the middle of a caucus I can handle, but I start blushing and stuttering when someone offers me a plate of cookies. How does THAT make sense?

        I plan on participating in the video as soon as I figure out how to work the webcam on my laptop. I’ve had this computer for 9 months, but I’ve never actually used it.

        Like

      • MerandaRoben says:

        so weird i feel the same way , every time i’m at the hospital i am cracking jokes, during my last Colonoscopy i was awake (on pain killers) but ya i was laughing and having full conversations with my GI and the nurse , Its true it seems nothing really hits me until i am at home alone and thinking about or the anxiety attacks a randomly get
        you know after trying to be positive and somewhat ignore how scary it can and how much pain you have gone throw..etc for so long trying to act “normal” then all of a sudden the smallest thing ..like for example not liking how your hair looks throws you into a crying mess wtf is up with that!?! the reality of this disease is insane

        FINALLY someone who feel the same way about food , i thought i was the only person who got so embarrassed with the whole deal ,blushing and stuttering when it comes to food!,
        i make up reasons not to go out on dates to restaurants or try to avoid eating out as much as. I possible , i hate it

        and awesome 🙂

        Like

  5. MySpecificCarbohydrateDiet says:

    This is a great post – and so true! For me, the most annoying thing about my UC is actually the accompanying joint pain. Sometimes it’s so bad I can’t walk. I of course hate the diarrhoea itself (this is number 2 – excuse the pun!), but hobbling around like an old person makes me feel feeble and frail, and really knocks my confidence. Having to cancel plans would definitely be number 3. – Debby

    Like

  6. flareuphope says:

    Love this post!
    The top 3 for me would be urgency, lack of understanding and unpredictability. Urgency is just a pain the the ass, literally. Waking up from sleep and trying to make it to the bathroom without an accident, paying attention to where every bathroom is and having to pack emergency clothes just in case. I hate complaining about this disease and it’s many inconveniences but it feels good to let it out!
    The lack of understanding is also frustrating. I hate when someone tells me things could always be worse. Thank you for pointing out the obvious and making me feel like my disease isn’t serious . And finally, unpredictability. I avoid making plans because I don’t know how I’ll be feeling or if I’ll be able to make it. I hate canceling, and am working hard not to feel guilty when I’m not able to attend gatherings.
    Thanks so much for this post! I love reading all the comments.

    Like

    • MerandaRoben says:

      I see i am not alone in HATING urgency!
      the lack of understanding is vast ,hopefully one day people will understand us!
      I really hate cancelling plans due to this unpredictable disease its hard
      and no problem it feels great getting the “crap” of my chest and having great responses, it makes me feel understood for once!

      Hoping you will all participate in the awareness video!

      Like

  7. Pingback: My IBD Life | Photography By: Meranda Roben O'Hara

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