• What It’s Really All About

    December 6, 2012

    It being IBD Awareness Week and all, I thought I’d share a great UC website as well as an email from its owner. This morning, Adam from IHaveUC.com sent the message below to all of the folks (including me) on his listserve. In it, he encourages those of us with UC to tell others what it’s “really all about.” The more we educate and get people talking, the closer we are to finding a cure. So, even though it’s not the most glamorous topic to blog about, I, too, will continue to tell others what UC is really all about. Thanks for the email, Adam.

    280-280-grav

    ALRIGHT, SO HERE’S THE DEAL, last night I was over at a friends house for dinner (my wife was out with her girlfriends at some Czech meetup group deal in Mountain View) and I had a pretty crazy realization.

    Even though I thought these friend knew all about my colitis, and all of the symptoms that go along with it, I was wrong.  I must have left some things out.

    We were all sitting down at dinner, and somehow the topic of the iHaveUC website came up.  My buddy’s wife started asking me about a few things…one thing led to another and I was reading off somebody’s story with an iPad over dinner.(that’s what you’d expect from me right:)  Like most of the stories on the website, they start with an introduction, then a section about symptoms.

    I started reading “This went on for 2 years, on and off the Prednisolone to stop the bleeding, toilet 20 or more times a day, taking Imodium just to go to work”, and then I read out a bit more, but since we were eating dinner and looking at iPAD’s, something told me it wasn’t the time to get into the story much longer.

    There was total silence.

    Then, after a few seconds, my buddy’s wife asked if I also had bleeding when I was real sick several years ago.  “UH, Heck Yeah”, I told her.  “I was bleeding like crazy for weeks and weeks, of course I was bleeding.”

    It’s one thing to be talking about my “old symptoms” now.  Of course it’s easy to tell friends and family that things were awful and really bad “back in the day when I was severe”.  It’s easy now to talk about it. But what if I was still severe with nasty UC?  Would it still be easy to talk about?

    The answer might be “NO”, but at the same time, it can also be a “YES”.  That’s up to the UC’er.

    One thing is for certain.  This disease is not something that the average person learns about.  Average people who don’t have UC don’t go reading up on google, or youtube, or the iHaveUC site about this funny thing called ulcerative colitis.  Outsiders to UC just don’t do that for shits and giggles, at least I hope not right!

    So guess what, I’m happy to report to you that getting the real deal message across is our job.  That’s right, the UC’ers of the world have some more work to do.  We need to let others know what its REALLY ALL ABOUT.

    Once you explain the bloody details that active ulcerative colitis can often mean blood flying out of your poop hole and into the toilet for weeks and months on end, that type of thing sticks into people’s brains.  And especially if you follow up with telling whoever you’re talking to WHAT YOU THINK, and WHY YOU THINK this is all happening.

    If you explain the dirty details about active UC symptoms early on, I can promise that when you’re sitting down to dinner several years later, symptom free and feeling great, the person you explained UC to before won’t be asking you “Did you have bleeding like that other UC person…?”

    Just like everything else with this disease, the choice is always UP TO YOU.  You can tell people the real deal about UC, or you can hide the reality.  I think its better to educate the whole story.  And you know what, you’re friends are interested in the details…more than you’d think.

    Warm regards,

    Adam Scheuer
    www.ihaveuc.com

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    { 57 comments… read them below or add one }

    sam December 6, 2012 at 2:57 pm

    wow… running out of content much??? boring! stop blogging…

    Reply

    Tina December 6, 2012 at 3:01 pm

    Eww. How about you stop reading? UC is an important topic to me, and I’m more than happy to spread the word in anyway that I can.

    Reply

    Marnie December 6, 2012 at 3:08 pm

    @Tina:
    I think sam may be getting at the fact that you simply copy and pasted someone else’s content. No original contribution from yourself about what “UC is really all about”.

    Reply

    Tina December 6, 2012 at 3:14 pm

    I’m not so sure about that. I think Sam was just being mean. The purpose of my post was to share a great resource and message to those who suffer from UC.

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    Mary December 6, 2012 at 3:23 pm

    @Tina: Dang people are being tough on you today! Last time I checked people don’t have to read your blog… I say it’s your blog and you post what you want! I love your blog and I appreciate all of the hard work that you put into it :) Way to spread the word and raise awareness about UC…I never heard of it before I started reading your posts about it. Shake off those haters, girl!

    Hayley December 7, 2012 at 5:30 pm

    @Tina: Agreed. I think it’s important to be informed about these issues. Don’t stop blogging, he can stop reading. I love your blog :)

    Katie @ Peace Love & Oats December 6, 2012 at 4:12 pm

    @Tina: I wish you could “like” comments because I Like yours, Tina. If people don’t like our blogs, they can stop reading. No need to write something nasty, it’s just bullying.

    Reply

    Amanda @ Eat More Rabbit Food December 6, 2012 at 3:06 pm

    @sam: There are tons of blogs out there…. Go read one you like. I think Tina is doing a great job and I enjoy reading her posts. There is no reason to go out of your way to be hateful.

    Reply

    sam December 6, 2012 at 3:42 pm

    @Amanda @ Eat More Rabbit Food:
    No Marnie was right, maybe I said it in a mean way but come on, since when does copy and pasting = a blog topic. If it was so imprtnant to you, you would take the time to write something yourself. No offense, if you are going to put your whole life on the iternet, you need to accept citisicm and not copy and paste your way thu blog topics. Its not fair to your readers. Honestly, I am surprised that there are any left. Maybe i am mean but dont throw your entire life on the internet if you cant take it.

    Reply

    Tina December 7, 2012 at 6:46 am

    I’ve written PLENTY about UC since my diagnosis. I was simply sharing a great message and website.

    I understand your point about criticism, but being mean and hateful is something different, especially when you take the time to leave a nasty comment.

    Reply

    Nadine December 8, 2012 at 2:34 pm

    @sam: so why keep coming back, Sam?

    Reply

    Dee December 6, 2012 at 4:07 pm

    I see little difference in this post compared to Tina suggesting a book, or that you check out another blog, or that you read an article she likes. Haters gonna hate, keep doing you, Tina. @sam:

    Reply

    dana December 6, 2012 at 4:43 pm

    @sam:
    “if you don’t have anything nice to say, don’t say anything at all”

    Reply

    Katelyn December 7, 2012 at 12:57 am

    @sam: So rude! Have a little respect and step away from the blog rather than posting a mean-spirited comment.

    Reply

    Sara @ fitcupcaker December 6, 2012 at 3:02 pm

    I am a nurse so I appreciate stuff like this even though others may not :) I like everything you blog about, lol. So keep it up!

    Reply

    Amanda @ Eat More Rabbit Food December 6, 2012 at 3:03 pm

    What a great point! I think this is the case with most things in life. If we don’t bring it out into the open and deal with it, it probably isn’t ever going to get any better.

    Reply

    Onion in My Hair December 6, 2012 at 3:08 pm

    Tina – I LOVE the awareness you bring to UC!!!!!!!!!!!!!!!!!!!!!!!

    <3

    Reply

    Emily December 6, 2012 at 3:21 pm

    I agree with most of your other readers. I learn when you share. :)

    Reply

    Karen @ Runner Girl Eats December 6, 2012 at 3:23 pm

    UC is def not the most attractive cause but a very important one. Great job sharing!

    Reply

    Annette@FitnessPerks December 6, 2012 at 3:49 pm

    Thanks for sharing, Tina! <3

    Reply

    Nicole@TheKidlessKronicles December 6, 2012 at 4:03 pm

    A lot of blogs link to things that other people have written. NO worries.

    It did spark a question if you don’t mind….can an attack of UC be short, say like a day? And then not have symptoms again for months and months? Or would that be something else?

    Thanks!
    The Kidless Kronicles

    Reply

    Tina December 6, 2012 at 4:07 pm

    It sounds like something else. UC is an inflammation of the colon, so the symptoms usually last for multiple days, weeks, months. Definitely check with your doc though!

    Reply

    Elizabeth December 6, 2012 at 4:05 pm

    I would have preferred a disclaimer above. I have a gentle disposition and I wasn’t prepared for the graphic nature of this post.

    Reply

    Rebecca December 6, 2012 at 5:08 pm

    @Elizabeth: @Elizabeth: As someone who has UC, I find it hard to feel bad for someone “with a gentle disposition” who doesn’t like reading about a disease that I have to deal with every day of my life. Grow up.

    Reply

    Michele December 6, 2012 at 8:13 pm

    @Elizabeth: Oh gosh, seriously? If you think this post was graphic I don’t know what kind of world you live in.

    Reply

    Katie @ Peace Love & Oats December 6, 2012 at 4:13 pm

    I’m glad you posted this! I have IBS and a few food intolerances and I always feel so awkward trying to describe them to people…

    Reply

    Monica December 6, 2012 at 4:16 pm

    I can’t imagine why anyone would respond negatively to this post. Thanks for posting it and bringing awareness!

    Reply

    dana December 6, 2012 at 4:44 pm

    very interesting article, Tina before your blog I had never heard of UC. I appreciate you spreading light on a very unknown topic. Keep doing what you are doing, you are my favorite blogger and i look forward to every post you write.

    Reply

    Kristen@Change of Pace December 6, 2012 at 4:49 pm

    I hate that you have negative comments on such a great post. It’s informative and brings attention to the disease. I knew nothing about it until you started blogging about your symptoms. I appreciate you doing different posts. Whether it’s from your or a guest :)

    Reply

    Arie December 6, 2012 at 4:54 pm

    Tina thank you for sharing!! I have a cousin with UC and as a health professional I value your openness and information on a personal level.

    Reply

    TorontoRunner December 6, 2012 at 5:20 pm

    Thank you SO much for posting this and raising awareness!
    I have close friends that deal with this and really had no *real* idea of just what they went through until I sat and read/studied it myself.

    Reply

    Fizz Hiser December 6, 2012 at 5:27 pm

    Love this Tina.
    I am not a UC sufferer (thank god) but I have had IBS my whole life and it sucks. Having to constantly think/worry about what to eat, where’s the nearest bathroom, explaining it to people etc ain’t fun.
    Good for you for spreading the word!

    Reply

    Melissa December 6, 2012 at 5:29 pm

    Thanks for posting this! I, personally, have never really looked in UC and now I’m a little more interested (I’m studying to be a nurse :) ) And don’t let rude comments bring you down. I love your blog and always learn a lot, and pictures of Murphy always keep me entertained at school :)

    Reply

    Jenn December 6, 2012 at 5:45 pm

    Thank you for this post. I have recently been diagnosed with UC but cannot take medication due to being pregnant. There is so much information out there on certain diets to follow that can help decrease symptoms. Can you send me a few titles to check out? It seems when I google them, it feels overwhelming.

    Reply

    Tina December 6, 2012 at 5:49 pm

    I’m sorry to hear that. Some people have success with SCD, GAPS, and Paleo.

    Reply

    Jenn December 6, 2012 at 6:02 pm

    Thank you! SCD=The Specific Carbohydrate Diet?

    Reply

    Tina December 6, 2012 at 6:03 pm

    Yep! :)

    Reply

    Jenn December 6, 2012 at 6:10 pm

    Thank you again for all your help!

    Michele December 6, 2012 at 8:11 pm

    I have IBS and it sucks! I hate to eat out because for sure I will need to find a bathroom very soon afterwards. I go to the bathroom a minimum of 10 times a day. People don’t understand what it’s like. I take Immodium a lot to go to social events or if I am going to be somewhere that there might not be a bathroom. I have blood sometimes but not often so I don’t think it’s UC. Thanks for having the courage to post about topics like this that people don’t always like to talk about.

    Reply

    Lisa December 6, 2012 at 8:22 pm

    I had know idea about the reality of UC. It’s better that we be informed. All of us know different things based on our unique life experiences. Some of what we go through as humans can be rather difficult, but talking about it helps build support systems and prepares us for what we may have to deal with some day. Anyway, I’m glad that you’re sharing with us. Thank you Tina and Adam!

    Reply

    Lily December 6, 2012 at 8:26 pm

    I have UC – please keep blogging about it to spread awareness. I just subscribed to Adam’s website. thank you!!

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    Sara @ fitcupcaker December 6, 2012 at 9:19 pm

    Yea who cares what people say, if they don’t want to read your blog they don’t have to. No need to be nasty!

    Reply

    Ilana December 6, 2012 at 9:42 pm

    Just wanted to show some love too – you are my favorite blogger, and I look forward to reading every day.

    Reply

    Danica @ It's Progression December 6, 2012 at 10:23 pm

    Adam did a really nice job wording that, and makes such a good point! Thanks for sharing – both of you!

    Reply

    Christine December 6, 2012 at 10:27 pm

    Anyone who reads your blog daily knows your struggle with UC. I am happy that you are honest enough to write about it. I know you don’t need to write about it. I know that you are writing about it to help people. It’s not the easy path, but the right path. Good for you!

    Reply

    GJ December 6, 2012 at 11:17 pm

    I think this post is helpful not just for people who have UC but also for people in general with chronic medical problems. I have a neurological condition that limits me and impacts every part of my life. That includes mind and body because mentally it is hard to be happy and carefree when you are suffering. Anyhow I have had the condition for years now and I tend to go in phases on how much I share to people. It also depends of course with who it is. Some people I do share my battle with are very understanding but then I have also had where people say things that make me feel worse. I think until you face something of this level you can’t truly understand but just listening to someone is the best a person can do in my opinion and letting them know you are there. I do feel in general that support of people is so helpful in battles but one has to do it when they feel comfortable and decide how much they want to share.
    Glad to hear you are feeling better and I hope the new year brings health and happiness. I may have missed this and if you are not wanting to share I understand but do you feel your paleo style of eating has helped this condition? I had noticed you do allow some non paleo foods and I am wondering do you notice a difference when you eat them? I had always thought you had to be super rigid for a specific health problem for your body to heal but I am not that familiar.
    Sorry for my long reply but I think this was a nice post and I am sorry you get critical responses.

    Reply

    Melissa December 7, 2012 at 2:50 am

    What a small world. I have Crohn’s disease, and my doctor’s wife sent me the link to Adam’s blog – she’s a friend of his. I have always been private about the details – until now. I’m recovering from an emergency surgery and have decided it’s time to be transparent… Thanks for sharing this post!

    Reply

    Mary December 7, 2012 at 8:30 am

    Thank you for posting this, Tina! My step brother has UC and also battles from depression. It always seems like the depression triggers a flare-up and a flare-up triggers the depression. It’s a terrible cycle for him. I think that part of the problem is that he has never been proactive about his diagnosis. He always has a “poor me” attitude, rather than a “this sucks, but what can I do to make it the best possible situation” attitude. With people like you bringing awareness to the disease, it is my hope that he will realize his UC and his depression can be managed, and he can still live a happy, productive life! Keep doing what you’re doing! :)

    Reply

    Melanie @ beautifullynutty December 7, 2012 at 8:41 am

    As a fellow UC’er I appreciated this post greatly!

    Reply

    Jenn December 7, 2012 at 10:10 am

    Tina,
    I have been reading your posts on UC a lot lately – my boyfriend of one year has been battling a terrible UC flair (first time in our relationship) and it’s been a little struggle for me to know how to support him. I really appreciate you helping shed some light – perhaps Mal could write a post on how to be a supportive partner/spouse to someone suffering from UC. I bet there are other women/men out there in our role and would love some insight.
    Keep it up and ignore the haters :)

    Reply

    Carol T. December 7, 2012 at 10:43 am

    Hi Tina:

    Love your blog…. some people are just mean and nasty… Keep up with the great work and information that you provide to your readers…

    Reply

    tammy brown December 7, 2012 at 11:10 am

    Thank you Tina for this great post! I am too am a UC suffer. Now I have another blog to follow! Cheers!!!

    Reply

    Jessica December 7, 2012 at 2:07 pm

    WOW people are being ridiculous about this! Its YOUR blog – post whatever you want! Good gracious.

    Reply

    Tara M December 7, 2012 at 9:54 pm

    Thanks for the post Tina! I enjoy reading it daily. :) Thank you for allowing us into your life by shedding light on topics such as IBD, Crossfit, and MURPHY!!! I have 2 pugs myself and whenever I read the posts about Murphy I get a smile and one of those “Mine do that too!!!! laughs”. I especially was fond of your “Pug Positions” post. I see those positions on a daily basis. I think there are so many more people that would agree with me and say that you do a FANTASTIC job at enlightening us. :) I look forward to your next post Tina. BLOG ON!!!

    Reply

    Meg December 8, 2012 at 2:34 am

    I read your blog almost everyday, and usually I don’t comment but the negativity towards your post made me want to send some support your way! I am training to be a dietitian and recently did a rotation in gastrointestinal surgery (inspired a lot by the fact that my mum also has UC!) where I learned from my patients how much ignorance can be shown towards people with UC/Crohn’s/IBS…it’s ridiculous! I seriously applaud you for sharing Adam’s story, and for continuing to share your story with your readers :)

    Reply

    Tina December 8, 2012 at 7:15 am

    Thank you! :)

    Reply

    Alissa Jo December 10, 2012 at 12:04 pm

    @sam-
    Before making nasty comments, please learn how to use grammar, punctuations and spelling. If you’re going to be a jerk for no reason, don’t make your post look like a third graded wrote it. Tina, I am a nurse and studying to be a Nurse Practitioner. Many people I see in the clinic setting for GI issues are typically embarrassed and hold back information. I always encourage people to be honest with me. I appreciate your honesty about your UC and the awareness you bring to the topic.

    Reply

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