Meeting other People with UC – Good Idea?

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Hey UC’ers & Family,

Today is one of those motivational mornings for me.

Last night was a very special evenings where I had the opportunity to meet live-in-person with a super special person and her partner.  Yes, of course, this person also has ulcerative colitis.  And even though we had never met each-other in person before, I had a feeling we’d for sure have quite a bit in common.  As expected, that was the case.

One of the big takeaways and amazing parts of the evening was me taking the migration back to the days of my first year after diagnosis.  This time period is often the hardest for any UC’ers to get past and deal with both physically and emotionally, and in a nutshell it pretty much sucks “XXXX”.  Yeah, not much fun.

But, guess what…there is hope.  And quite possibly I’m pretty sure that we can collectively as an international group come up with some ways to get past these tuff times.  Especially the feelings of being alone in the fight against UC, since that is most definitely not the case.  The woman I met with last night had never before met anybody else with UC, and I’m not sure how long that would have continued had we not met.  But, I’m happy she now can rest knowing for sure that she is NOT ALONE, and there’s actually quite a large amount of us moving through life with colitis.  Life does not stop, even when times are tuff.

Here’s my question for you:

Would you be interested

in meeting up with other UC’ers

who use this website

and the iHaveUC Facebook Page????

I sure hope your answer is a big fat “YES”.

Call me an idiot, but I do believe there is some pretty simple functionality within the facebook program that would allow for me to easily post “Events” to the facebook page (I sure hope you are a part of that page already…since there’s some really cool postings on there daily, some of which does not make it to this website page)

And the idea would be to use that page to facilitate “Local Events/Meetups of UC’ers” (or friends/spouses/etc…).  And, with the goal of putting more of you in personal touch with others, I’m pretty darn sure that with some more physical contact with others, the whole “living with UC” thing will become much easier to manage and move past and heck….probably more fun if you can imagine that.

So, without preaching too much here, let me know what you’re thoughts are.  Would you actually be interested in meeting with other people who have ulcerative colitis who use this website and specifically the facebook page I’ve created that has nearly 5,000 users (and grows daily)..??

Would you be willing to take a little bit of your precious time now and again to meet with others who might be in the middle of awful symptoms and looking for others to simply chat with????

Heck, would you interested in meeting with other folks with UC to simply talk about whatever the heck you like…Politics, religion, US Russian relations, Professional soccer biters, Rhianna, Michael Jordan…I don’t know….

Let me know, let your comments be known, I think this would be a super huge breakthrough for alot of you.

Let’s get this party started UC’ers,

Adam Scheuer

I added a video a moment ago to the facebook.com/ihaveuc page on this topic, check it out here to:  facebook page

 

PS:  And to Sylvie who I met last night, thank you so much for dinner, my wife and I had a great time meeting both of you, and I hope we meet again, maybe with a bigger group:)





36 Responses to “Meeting other People with UC – Good Idea?”

  1. Lisa C
    Lisa annJuly 23, 2014 at 2:33 am #

    I would absolutely love to meet anyone with UC …. I’ve suffered since 9 yrs old .. I am 32 now and still have never met anyone with the same condition .. I think your idea is fantastic :)

    • AdamJuly 23, 2014 at 2:38 am #

      Lisa,

      if you’re not on it already, join the facebook.com/ihaveuc page cause that’s where the “events” would be created from, and as long as you have your location listed within your facebook profile…this idea should work out pretty easily.

  2. Kim WestJuly 23, 2014 at 2:53 am #

    I would love it!!! I’m currently going through my surgeries to receive my J Pouch. I just have finished my 2nd of 3 surgeries last Friday. But I have suffered from UC for years prior. Plus all the medications did horrific things to me and my body. I also was diagnosed with inflammatory joint disease once being diagnosed with UC as well. So YES YES YES finding others in my area would be great!

  3. Robert MonksJuly 23, 2014 at 3:01 am #

    Just got diagnosed at 46 yo. and into my seconond month. Nervous and trying hard with diet to calm flare down. Seems like I’m living in 4-hr intervals and not much of a father, husband or business partner during this time. I’m not a Facebook user (personal decision) but hopeful through your website I could still meet with other local UC’ers?

    • AdamJuly 23, 2014 at 3:05 am #

      Hi Bob,

      Best of luck to you with getting through the early days post diagnosis. It’s one of the hardest periods, but it does end and life will move on for you. As far as not being a facebook user, the actual page is facebook.com/ihaveuc and is open to the public so you could actually check it out right now by going to that link, but some info will be missing based on individual user’s security. That said, I don’t know for sure how easy/hard it will be for you to constantly be monitoring that page to see if/when events are posted in your local area as facebook would otherwise let you know automatically if you were a user there. But let’s see, maybe it will be easy. Either way, wishing you the best moving forward:) -Adam

  4. Joe KempJuly 23, 2014 at 3:03 am #

    Hi Adam,

    Thanks for another great service and idea. This website has really helped me with my battle with UC, and acquiring information about how to deal with it. Reading other’s stories is also inspirational, and creates a community (be it virtual) of support. I haven’t joined the facebook page as I don’t want people I work with to know I have UC. I lost my means of employment (20 years) after being diagnosed and becoming hospital bound. Thankfully in remission due to strict adherence to the Paloe Diet, and lifestyle changes. Just some thoughts – Cheers Joe

  5. Alyson CowardJuly 23, 2014 at 4:22 am #

    Hey Adam,

    There is the website meetup.com which may be a better fit for all the Facebook/non-Facebook UCers out there. If you have a fb profile it looks it can still be used but it’s not required for those of us who don’t have one.
    Just wanted to put it out there.

    Regardless, I feel like I have been wanting to meet my local UCers forever it seems like, but I feel like I will never have the energy to commit to putting something together. Seeing this email this morning definitely lifted my spirits! Thank you Adam!

    • AdamJuly 24, 2014 at 2:00 am #

      Hey Alyson,
      For sure, I’ve actually talked about meetup.com for quite few years within some of the surveys and ebooks I’ve written, but I’ve never really received much great feedback from others with regards to that. That said, I think we’ve got a big enough community here to try and create some other meetup type situations, and by and large it appears a pretty large amount of the site’s users have facebook. In time, if there’s easy options to arrange these types of things directly through the site I’ll work on that, but for now facebook has such an easy tool to use with their “events” programs…

  6. SharonJuly 23, 2014 at 4:28 am #

    Count me in.

  7. Nadia EJuly 23, 2014 at 4:31 am #

    Brilliant idea! Having UC is so isolating and it would be great to meet people who know exactly what the symptoms feel like, and the emotional/psychological toll it takes.

  8. Cheryl LeMasterJuly 23, 2014 at 4:49 am #

    This is a great idea! Was diagnosed with UC in June of 2012 and while in my year long flare during 2013 felt like a prisoner in my own home (20-40 bloody BMs every day; anemia). While nothing to be ashamed of, it’s not something one discusses with just anybody. I’m grateful to Adam for his site and FB page. Be well all!!

  9. JesseJuly 23, 2014 at 4:55 am #

    Sounds like a great idea. I’ve considered going to an official CCFA support group, but I hesitate because I don’t want to be overwhelmed.

    Meeting new UCers 1 or 2 at a time sounds much more manageable.

    • MarleeJuly 23, 2014 at 3:13 pm #

      I suppose it depends on where you are and how many people attend the meetings in your area, but I’ve been going to my local CCFA support group for about five months now, and find it very helpful just to hear the struggles (and triumphs) of others and realize I’m not alone with this. I would encourage you to try a meeting and just see what you think.

  10. Tim B
    TimJuly 23, 2014 at 5:13 am #

    That would be great

  11. Lara
    LaraJuly 23, 2014 at 5:16 am #

    I would love to meet other UC sufferers!!!! It would be really great to be able to relate to someone who actually knows what I’m experiencing.

  12. TaraJuly 23, 2014 at 6:10 am #

    I would be interested!

  13. sue sekularJuly 23, 2014 at 6:36 am #

    yes would love to meet others with this problem. So many questions, so little time!

  14. russell andersenJuly 23, 2014 at 7:02 am #

    yup ! would be nice to meet a gal with U.C. so we can suffer together ! lol !

    • MarleeJuly 23, 2014 at 3:50 pm #

      An online dating site for U.C.ers (all IBDers for that matter) — now THAT would be awesome! :)

      • Kim WestJuly 23, 2014 at 4:01 pm #

        They have several of those groups on FB already!!!

        • russell andersenJuly 24, 2014 at 9:54 am #

          not the same , shes talking about a dating site !!!!

  15. Emie
    EmieJuly 23, 2014 at 7:08 am #

    I would love to!!! Is it ok that I’m a j-poucher and not necessarily a “UC”er anymore?

    • Alyson CowardJuly 23, 2014 at 7:34 am #

      I’m a UCer and I definitely want to meet j-pouchers! :) My vote is yes!

    • Kim WestJuly 23, 2014 at 4:03 pm #

      I say Yes!!! I’m on step 2 of 3 getting my pouch too!

    • AdamJuly 24, 2014 at 1:55 am #

      Emie,

      Here’s a link to get the party started in your area, fill out the form I created, and let’s see where this goes~!

      http://ihaveuc.polldaddy.com/s/colitis-meetup-form

  16. LoriJuly 23, 2014 at 7:45 am #

    Fantastic idea! I’ve only known one other person with UC and that was my Dad but he is now deceased.
    Would like to learn how others live with this disease on a daily basis.

  17. LornaJuly 23, 2014 at 8:24 am #

    I think this is a fantastic idea!!

  18. DarleneJuly 23, 2014 at 8:53 am #

    When I read this page I’m always amazed at the large number of beautiful people who are also kind and wise; who are finding their way through this maze called UC. I love seeing the photos and reading people’s real life stories. It’s inspiring to read the stories. Nadia E mentioned how isolating this disease is — especially during a flare. In my personal situation I live alone and sometimes have to depend on friends to help me but I can still feel very isolated. A FaceBook page can bring a sense of community. (I can’t remember if I’ve joined your FB page or not. Sometimes I do things on the fly like joining a FB page and then forget what I’ve done! :-)) I, too, think your idea is wonderful and I vote YES.

    • Nadia EJuly 23, 2014 at 9:14 am #

      Hi Darlene, Please feel free to reach out whenever you do have a flare! I’m a single mom and when my son is off visiting his dad, I’m often alone for several days. Unless someone has gone through a flare, they will never understand how painful and emotionally draining it can be. We UC-ers need to stick together! N.

  19. Rebeka
    RebekaJuly 23, 2014 at 9:47 am #

    Let’s do it! I’ve never met anyone with UC, and even though my disease has been fairly well controlled, it would mean a lot to meet others.

  20. CheyenneJuly 23, 2014 at 10:25 am #

    I think it would be an excellent idea and would definitely participate in my area!!

  21. GeorgiannaJuly 23, 2014 at 11:09 am #

    YES!!

  22. MarleeJuly 23, 2014 at 3:42 pm #

    I like this idea! Any chance to meet and talk to others with UC would be wonderful, so I’m glad to see this happen! Also those in the U.S. that have a CCFA support group in their area should definitely check that out. http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/ If you don’t see a group close to you on their website map, I would call to ask directly, as my local group was not even ON their map until I brought it to the attention of my group’s leader. I’m thinking about asking a couple people at my support group meeting whether they’d want to help organize more of a meetup-type event in our area that we could announce on your fb site. Sounds fun!

  23. JoannaJuly 24, 2014 at 1:35 am #

    I would love to – I am in Birmingham UK though, so can you all travel ? ;-) xx

  24. AdibJuly 30, 2014 at 5:20 pm #

    Yaaaaaees I liked the idea
    I am in UC for five years now .
    I met a person like me ones and I felt so happy that I am not the only one in the world suffering the same .
    I started to feel that UCrs are like
    X MEN …. LOL
    We need special kind of food and we need to calm down our emotions not to hurt our colon …
    So lets start to exchange our experiences and stories

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