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Telling An Old Friend About Your UC

Me and Ana in the main square (Mustek)
in Prague, Czech Dec. 29, 2012

Hey UC’ers,

How are you all doing?  I hope the holiday season is going well for you, and you’re all excited for a new year that’s going to be here in no time.

When was the last time you met up with someone, let’s say an old friend for example.  Someone who you haven’t seen since your UC diagnosis perhaps.  Did you talk about your UC?  Did you hide it completely?  That’s what this story is all about.  These meetups happen, and we all have choices to make.

About a week ago, my wife and I traveled to her country of the Czech Republic, and we’ll be here for a few more weeks until we train it over to Hugary and Croatia and then a few more stops.  I had a pretty interesting day so far, and I wanted to share some of it with you.

For pretty much everyone with UC, there comes a time where you meet up with an old friend for the first time in a long time.  And, if you haven’t seen and talked with that person since your diagnosis, then you for sure have a choice to make.  Do you tell them about your UC or not?

As you might have guessed it by the title here, I met up with my friend Ana who lives here in Prague.  She’s originally from Russia, but has been here for several years.  We worked together five years ago when I was living in Czech, and we hung out quite a bit after work with some other friends.  You know what I mean, getting lunches, hitting the local bar scene, chatting about life etc…  When I moved back to the states, we’ve really only connected on facebook and that’s about it.  Coincidentally, Ana has a sister named Elena, who visited the US and stayed with my wife and I just 3 days before my diagnosis back in early October 2008.  It was an awful time for me since my “unknown symptoms” were super severe.   I was bummed that I was such a boring (bathroom living) host for those two days she slept on our floor (don’t worry, she had a sleeping bag).  I wanted to take her out around San Francisco, have some fun, but that just wasn’t possible.  I was too sick and too weak.  And sure enough, I had my colonoscopy a few days after Elena left and the rest is history.

But today Ana and I met up.  We decided to meet in the center of Prague, I’m sure some of you have been there.  Mustek, the main transfer hub of two metro lines was the spot.  Right under the huge Christmas tree was the exact place.  I was super excited to see her again.  We had some great times together back in the day.  And although lots has changed since those pre-UC days when we were together last, most things are the same.

old town square Prague Blacksmith

Once we got tot he old town square “OTS”. There are a buttload of booths and people like this dude doing some oldschool blacksmithing. I could watch him all day.

I’m not sure exactly, but I bet that it wasn’t 5 minutes since we met that I gave her the whole deal on my colitis.  And why not, it is a part of my life now.  There’s no reason to avoid it.  And guess what, she was interested in the whole thing.  The conversation started off with me telling her that I was diagnosed with UC pretty much right after her sister stayed with Michaela and I back in the end of September 2008.  Like I usually ask most people, I asked her if she had ever heard of “Ulcerative Colitis” before.   And like most people, she said “NO”.  Then I did the usual and asked if she had heard of “Crohn’s Disease”.  Another “No” from Ana.  So I told her that UC was considered an “auto-immune” disease which basically means the body is attacking itself and not stopping, similar to arthritis and psoriasis and a whole ton of other “auto-immune” diseases.  She started coming around now.  And then I went into the whole idea of how the colon, actually I think I explained that as the pipe that drops the poop out of your butt, can start to bleed and your body starts to get weak, cramping, and often horrible pains.

Alright, now with these visuals, she started to get that we weren’t talking about some bad stomach aches, and this was a pretty nasty sounding deal.  But hey, that is was UC looks and feels like sometimes, and there’s no reason to hide any of this.  No reason that just UC’ers know the whats-what with UC symptoms.

Anyways, I went on for a few more minutes about how my early days went right after my diagnosis.  How I was taking all sorts of medications.  How I lost a crapload of weight.  And how I eventually started doubting getting out of the flare up without getting surgery.  And then, while we were walking around, and looking for a place to get some food, I started telling her about the SCD diet that I follow (most of the time, been a little hard lately with all the awesome Czech Christmas cookies going around out here, ain’t gonna lie folks).  I told her how I have been off the alcohol for 3 and a half years now.  That was a tuff one for her to grasp since we were always drinking pretty hard before.  But she got it.  I told her I haven’t had bread or pizza in years now (wait a minute, I did have a tiny piece of Czech bomb-ass dark bread yesterday, but just a little).  I boiled it down to my diet is much like the olden day caveman foods.

chicken kabob from old town square Prague

I ended up getting a BOMB chicken skewer for 100 Koruns (about 5 bucks) from this guy’s stall in the old town square. I told him to keep the bread bun that it usually comes with, and he definitely gave me the “what, no bread???” look:)) Man, super tasty though. Chicken, onions, some peppers and some super tasty salt spices.

Maybe the whole conversation on my UC went on for 10 minutes, I wasn’t timing it, but it most definitely wasn’t too much of our 3 hour walk through Prague, over bridges, and back to the Old Town Square for some street food from the different vendors that are out slinging their goodies.  And I’m happy as hell she knows what’s up with my UC now.  It’s that simple.

Everyone is going to handle this meetup situation with old friends differently to some degree, and there’s no right or wrong way to do it.  But I for sure am a big believer that your true friends most definitely want to know the deep dark details of your lives, and as a UC’er of the world, all of us have nothing to hide from our friends.

You know, one of my ongoing dreams is that someone from this website is going to write to me and say, “Hey Adam, I told my best friend about my UC, and my symptoms, and guess what… He/she told me they were living with and hiding those symptoms right now.  And, after we talked, my friend went to the doctor and finally got diagnosed with UC, and is treating it and finally feeling better.”

I hope Ana never tells me that, but if for some crazy reason our conversation today had a lightbulb go off in her head that any bleeding, cramping, and whatever else she might be hiding is more than just an ongoing bad stomach ache or hemorrhoids, well, that in the strangest way would make me feel good, and make conversations about UC worth even more.  It is our job as UC’ers to educate others about the condition.  Too many people have no clue what the words “Ulcerative Colitis” mean.

Have a safe and happy new year!

AND if YOU have any ideas on how to handle these meetup situations, please let them be known below.  There’s got to be millions of ways to go about it.

– Adam Scheuer

 

UPDATE: (January 1, 2013, holy crap, did we really just blow through another year?:)

-So earlier today, my wife and went over to some old friends who happen to live down the street from where we are in Prague 7.  Anyways, Brian and his wife I guess throw an annual cheese and wine party on January 1st.  So we rolled on down to see them and their kids.

We were the first to arrive so after a few minutes of catch up, Brian who wrote a book called: The Seeds of Cain: (A Novel), offered me some beer or wine etc…  And I told him I actually don’t drink anymore.  He’s been sipping the Czech beer for nearly ten years now and is full on Irishman so his drinking goes way back, and when we used to hang out it was always part of the equation.

Anyways, I told him right away I have this digestive disease called ulcerative colitis, and I stopped drinking because of it over three years ago.  Coincidentally, he was like, “Holy crap, my brother was diagnosed with that back when he was about 20 years old!”.  So I was the lone ranger sipping water, but it as pretty good tap water none the less.

What are the chances?  Any actuaries out there with that answer???




Prague

17 Responses to Telling An Old Friend About Your UC

  1. Jane Walker December 29, 2012 at 8:56 am #

    Yup, i have no trouble telling my friends, but my family still doesn’t get how bad it can be. They live in Europe too and I live in the US, so they never got to ‘see it in action’ because during the first two years of flare ups I couldn’t travel, and since I found Zyflamend they still don’t see it in action… I told them, but they don’t see me laying on the couch cramping all day, so whatchagonnado, right!

    I do know someone who has Chrons and had a resection, and I feel so bad that I never knew until it was too late to tell him about my liquid gold Zyflamend… So DO TELL !!!

    • Adam
      Adam December 29, 2012 at 4:06 pm #

      That’s pretty interesting Jane, the situation with your UC with regards to your family’s awareness of “how bad it can be”. I know quite a few people don’t like to go into the details with loved ones for fear of “freaking them out” especially when it comes to their children.
      I hope your friend is doing better now post surgery, and for sure, yet another reason to talk about what’s going on, Crohn’s folks are like our brothers and sisters (or aunts and uncles) in this IBD world.

      Can’t wait for your story to go live real soon.
      Ahoj,
      Adam

  2. NadiaE December 29, 2012 at 3:24 pm #

    I met up with an old friend yesterday, whom I hadn’t seen in 12 years. Oddly enough, the first words out of his mouth were “you look great!”. Yep, UC is great for slimming down and keeping the weight off. How do you follow up to that? “oh, well, I have an auto-immune disease, which requires hours spent in the bathroom with crippling pain, and a diet of water, air and crackers?”. Somehow that seems off-putting, and just a teensy bit uncomfortable, so I find myself downplaying the condition, turning symptoms into mere inconveniences, and trips to the ER as sort of mad-cap Keystone cop adventures. Afterwards, it all feels terribly false and hollow.

    I hope to one day get to the point of being able to share what it’s like with those who truly care about me, without worrying about pity or having made them feel uncomfortable.

    • bev December 29, 2012 at 3:52 pm #

      That’s priceles NadiaE!

      Very funny post…thank you! I neede to laugh!

      I hear what you are saying…people tell me how great I look…how skinny I am! How come the people who are so skinny…aren’t hungry? If only they knew…

      Love you Keystone Cop analogy…sometimes, looking back, it IS very like that…trying to find a bathroom with your butt cheeks clenched tight…Charlie Chaplin perhaps…lol? All I needed was the cane prop…

    • Adam
      Adam December 29, 2012 at 4:28 pm #

      Hey Nadia,

      Thanks for sharing. I’m gonna go google “Keystone Cop Adventures” in a moment, I feel like i’m missing out on something cool there:)

      Every situation’s probably going to be a bit different with this situation we’re talking on right. And I’m not trying to get all preacher style here by any means, but we as the UC group do have the dare I say “special” privilege of really knowing whats up with the disease. And in that sense we are above the rest of the common folk…imagine that right…

      So, if on one side you want share what its like without any pity/uncomfortableness, there’s definitely some ways to get their. I think during the “Yep UC is great for slimming down/ which requires hours spent in the bathroom…” part, you can afterwards throw in a question to test the waters. Maybe something like:

      “Had you ever heard of ulcerative colitis before? or Crohn’s Disease”
      If someone has, its super easy to ask what they remember about “it”.
      If no, well, maybe at that point you can then make the split decision call as to where you want to go from there.

      Maybe a quickie how/why you got diagnosed.

      No matter what Nadia, YOU LOOK GOOD! And I’m sure whatever you decided to share with your old friend was appreciate by him too.

      We learn so much about medications, surgery procedures, colonoscopies etc…, but I’m still waiting for UC’ers to say the doctors called an appointment to talk about the communication process with friends and family about UC. Someday, until then you’re doing great in my mind:)

      -Adam

  3. Natalie December 29, 2012 at 3:32 pm #

    Hey Adam!

    Great pictures! How cool that you met up with Ana and took a tour of the town with her. Good for you that you told her about your colitis.

    Adam, I do tell old friends about my colitis and MOST people never heard of it! I remember hearing about UC when I was about 18 years old (am now 66!). However, I never realized what a serious disease this can be. I have a friend I ran into a few years back and she told me that she had Crohn’s disease and had to be hospitalized a few times. We started to hang out together and every time we went out, she would have to run to the bathroom several times throughout the evening. I just couldn’t understand why she had to use the bathroom so much. Now, since I was diagnosed with UC, I thoroughly understand!! Last I heard….my friend is in remission. God bless her! I, too, am in remission at the present time and thank God every day. I just hope that they come up with a cure and hope it will be in the very near future!!

    A HAPPY AND HEALTHY NEW YEAR TO YOU ADAM!

    • Adam
      Adam December 29, 2012 at 4:29 pm #

      Hey Natalie,
      Glad you liked the pictures and way glad you’re feeling good.
      Happy new years to you and your family, and your friend and her fam too:
      -Adam

  4. bev December 29, 2012 at 3:33 pm #

    Adam!

    Prague, Huh? Wow! So cool…

    That Ana is one pretty lady…Czech girls, right? Michaela is living proof!

    Anyway, just wanted to say…mucho happy holidays to you and yours, Adam!

    Let’s make 2013 the year we heal our own UC!!! I just know that each and every one of us can do it. I feel like this is going to be the year when we all get some good results…and news!! You’ll see!! There are more natural ways of treating this condition than with harsh medications!! I can also feel that perhaps some good news is coming for all of us who suffer with this!!!

    Cheers to all and happy new year!!!

    Bev:):):)

    • Adam
      Adam December 29, 2012 at 4:33 pm #

      What up Bev,

      2013 Is gonna be a rippin year, that 13 is gonna be way lucky for all. Ana is actually from Russia but lives here.

      I love your spirit, keep it burning bright, and happi Nueva Ano to you guys!

      • bev December 29, 2012 at 5:49 pm #

        Ah, well, Russian girls are pretty pretty too!

        Same to you Adam!!

        Cheers and stay well:)

  5. shelly in maine December 29, 2012 at 4:30 pm #

    Ah Waldo/Adam!…there you are!
    Great post as usual. Coincidentally, I just had a friend from high shool (even though i was diagnosed at 15…i kept it pretty well hidden)email and tell me her son has UC…saw a link I had “liked” on Dede Cummming’s new book living with. Crohn’s and Colitis-very good by the way- and she messaged me! So I made sure to “like” the awesome ihaveuc site so I can spread the word! I guess there is some good to be done through Facebook! :-)
    I do feel like people want to know, but not really. I think only real friends need or want to know the gory details and still will not understand…just like my family members who pretty much all have some ibd! Not to be negative, but people are just so busy and have their own “sh*t” to deal with! :-) on a positive, I’ve been able to give info to a friend for her husband and introduced him to your awesome site! So yes, there is always that waiting to connect with other UC’ers!
    Safe travels and Happy and Healthy New Year..and to all! :-) Shelly

    • Adam
      Adam December 29, 2012 at 4:44 pm #

      Waldos eh, think I saw a few of them rambling around today actually:)

      You make some interesting points: People wanting to know but not really, and how people have their own stuff to deal with and are busy.

      Here’s something fun, and often weeds out the bullshitters.

      Ask a question: i.e. “Do you want me to tell you some of the details my UC?”
      (Then go silent and wait for response. Assuming they say yes…)
      Follow up with: “Are you sure about this?”
      (then go silent again)

      It’s kinda like giving two chances. Often the second answer is going to be a bit different than the first. Maybe very different. Just an idea.

      I hope your friends learn some stuff from the site if they check it out.

      And happy new years coming soon to Maine,
      Adam

  6. Paul Willoughby December 30, 2012 at 9:53 am #

    Great article and subject, Adam. I usually don’t hesitate to tell old friends (and new ones) so long as it’s the right situation. Whenever planning things to do with friends, I always tell them I am cool with whatever as long as the toilet isn’t too far away and then explain to them about UC if they don’t already know I have it. Friends understand and usually don’t mind.

    Paul

    • Adam
      Adam January 1, 2013 at 1:40 pm #

      Right on Paul, that sounds like a great way to go about it!

      And great hearing from you! All the best to you and your family and best of luck to anybody who’s getting in the ring with you in the near future for some karate chopping:)

      Happy new year, and I hope you’re well,

      -Adam

      • Paul Willoughby January 9, 2013 at 6:30 pm #

        Thanks so much and happy New Year to you and yours. I’m doing ok. I think I ate or drank something I should not have on New Years Eve and it’s taking me a little bit to get everything back under control – but I will.

        Paul

  7. xfinite January 5, 2013 at 2:08 pm #

    Adam – sorry to hijack this posting. But did you ever decide on whether or not to take the 5asa drugs after your colonoscopy? I believe the doctor recommended that you do but you wanted to think about it.

    Just wondering if there were any updates! For some reason I can’t find that post…maybe you have updated it!

    • Adam
      Adam January 8, 2013 at 10:10 am #

      Thanks for asking!
      I’m still in the debate mode actually. You know its pretty tuff to start taking a medication after several years when you had no benefits from it previously. I haven’t ruled it out, but no decision either to use something like that long term.

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