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Does Colitis Get Better? Let’s Talk About It

The quick answer is yes.  But if you are in the middle of an all out flare up at the moment, especially if its gone on for weeks and months, it is most definitely hard to imagine.

They classify UC as an auto-immune disease.  To some people that means our immune systems keep on responding and attacking over and over again.  And even though there are hundreds of thousands, if not millions of people worldwide living with ulcerative colitis, the disease is still difficult to understand in any definite terms.  Doctors and scientists agree and disagree on all sorts of aspects of UC from how it is triggered, to how best to treat people living with the disease.  You have probably found yourself caught in the middle of different ideas on how to move forward too.  And yes indeed, that is difficult, but don’t feel alone.  There’s more people living with UC than you probably realize, and it does get better.

What has really helped me out since my diagnosis back in October of 2008, is talking to others about my disease.  And I’m not talking about online, facebook, chat rooms etc… I’m talking about face to face, in person communication.  My know you will feel the benefits as well.  You don’t need to write stories on this website, or even post comments on here, that’s not the point.  I’m talking about simple conversations between you and people you come into contact with.  Maybe a close friend, or maybe your roommate, neighbor, heck, maybe even your mailman.  That is up to you.  But the big idea I hope you take away is that by talking about your UC with other people, it will make you feel better.

What’s one of the best things about talking about your UC with others?  THERE’S NO RULES.

  • If you want to talk about your symptoms in great detail, go for it!
  • If you want to talk about the nose hairs your up-tight doctor has, go for it!
  • Maybe you want to tell someone about the experience of getting violated by the colonoscopy snake, go for it! (People who have not had it, want to know what it’s like, strange but true…???)
  • Or who knows, maybe you want to tell somebody how depressed you’ve been feeling since your bleeding just isn’t going away, GO FOR IT!

It’s a great thing to do.  Get out of the closet, or bathroom for that matter, and start talking about your UC to others.  ESPECIALLY if friends or family members ask you questions.  That means they love you and want to know what you are going through.

Once again, you don’t have to follow any rules on any of this, there’s no prescription you need to follow three times per day.  It’s just going to make you feel better.  So start today, or whenever you’re feeling like crap, and let some outsiders know what UC is all about.  Who knows, you may end up talking to a fellow UC’er.  Or, you may end up talking to someone who actually knows someone else with UC.  Maybe they can introduce you.  Sounds random right…well, it happens all the time.

-Adam Scheuer





15 Responses to “Does Colitis Get Better? Let’s Talk About It”

  1. Don
    DonMay 27, 2013 at 7:40 am #

    I agree Adam! I’m surprised when I tell people and they ask what UC is? People should know about it!
    That way we can help those who are suffering instead of shoving them into the bathroom and slamming the door on them! Am I talking shit here? Hell yes!
    Don

    • AdamMay 27, 2013 at 8:40 am #

      Right on Don! And I’m pretty pumped for everyone to read your story coming up soon too! (I thunk I stole the out “out of the closet …or bathroom ” line from you too bud. Take care and happy memor Monday

  2. UC Family Boy
    Uc family boyMay 27, 2013 at 3:04 pm #

    Defo, I guess for some it is taking that first step and the rest falls into place.

    I for one hope it does get better. I haven’t managed to find true remission, just bouts of it through my stubbornness to achieve it with all my applied self educating on it.

    I have my sister to talk this with, and my friends when we meet. Sometimes it’s a bit sad now when it’s the first thing they ask about. I am now taz and UC. Rather than just taz. Sometimes it’s nice meeting new people and being just me, and leaving UC behind.

  3. BethanyMay 27, 2013 at 6:29 pm #

    Hey Adam,

    I completely and utterly agree with this post. When I first diagnosed I was very scared and lost. The saving grace in everything was my fiancee (poor thing) and my amazing friends. No matter if i was having a great day and wanted to shout it from the roof tops or I needed to cry for absolutely no reason at all, just talking to someone helped me beyond belief. The one thing I am super thankful for is that I am a paramedic and the majority of my friends are medical professionals that range from surgeons to ER docs to nurses, paramedics, CNA, and radiology techs. All of which are really perceptive about this stuff and take the good, bad, and disgusting in stride and ask questions and give recommendations and maybe occasionally yell at me when I push things a little harder than I should when I feel like garbage…. :-) They love me. haha. But yes, I would give this advice to anyone. TALK TO SOMEONE! Bottling things and not talking to people whether they be friend or stranger will help loads and save you from a very possible and very scary depression.

    • AdamMay 27, 2013 at 7:09 pm #

      Bethany,

      You are amazing, and keep the good vibes a rolling. (and big fat pat on the back to your fiancé too!!)

      PS: be careful on them rooftops, we don’t need any paramedics getting too crazy up there:)

      Amen to everything you said!!

  4. bevMay 27, 2013 at 9:59 pm #

    :)

    • JodiJune 26, 2013 at 12:58 pm #

      Hi Bev…

      I’ve been looking into trying your approach to treatment that I read about in one of your posts on another thread. I’d be interested in getting more specifics from you about it. Would you be open to some questions and maybe exchanging a couple of emails?

  5. Teanna
    TeannaMay 28, 2013 at 1:08 pm #

    LOVE this post! When I was first diagnosed I was mortified by this disease and all its awful symptoms. It took so long to diagnose me because I didn’t tell anyone about my embarrassing bloody diarrhea.. not even the doctor when she asked me outright! Now my family jokes about whether I have my extra diapers with me when we go out. It’s an amazing feeling to be open about this disease, because when you hide things or don’t talk about the nitty gritty, you feel trapped and alone like you’ve got this dirty little secret. It took me 9 years to finally be ready to share with anyone who asked (and some who didn’t), and I feel so much freer and happier since opening up! When you let this disease embarrass you or silence you, you let it win!!!

  6. AnnMay 29, 2013 at 6:07 am #

    Love, Love, Love this site…talking about UC with fellow UCer’s is a stress reliever in itself! THANK YOU!

  7. SharonMay 29, 2013 at 7:58 am #

    People in our culture are so darn worried about the way we are perceived. I have found that when I am willing to be vulnerable to other people, they are much more open about themselves. Maybe my friend doesn’t have UC but maybe they feel isolated and alone in their own issue (marital,financial, physical). If I am willing to be less than perfect, they can be free to do the same. Being open about your life can deepen relationships and build friendships in unexpected places. I try not to give TMI to everyone I meet, but I also am just as likely to say I have UC as I am to say I am from Florida. It’s a part of my story.

  8. KathySeptember 22, 2013 at 1:56 pm #

    I get a colonoscopy on Thursday…and i am so scared. For a few weeks I’ve been dealing with bloody diarrhea with mucous, pains in my stomach. Urgency to the point Im afraid I’m not going to make it to the bathroom. I’m going to the bathroom 10-12 times a day and almost every bowel movement is full of blood and mucous, sometimes that’s all there is the blood and mucous no stool. It seems morning is the worse! It all started after having Mexican food one evening for dinner then the next day had the left overs for lunch and nachos and cheese that night, well 1:30 in the morning it started and hasn’t stopped. What can I do till I know for sure if it is UC like the dr thinks?

    • AdamSeptember 22, 2013 at 2:02 pm #

      Hi Kathy,

      I’m sure this is probably some of the scariest times right now for you, and I wish I had a great answer. But the reality is that nobody will know for sure what is going on until your doctors perform the colonoscopy and share the results with you (which often will be right after you wake up from the colonoscopy so you won’t be waiting too long).

      I’d try as best you can to get some decent sleep (and of course that’s probably pretty hard), but maybe try to take some time off work if you work, or school if you’re in school and rest as much as you can. Stay at home, try to get some good movies to watch and just try to relax until the scope happens.

      I myself follow a pretty strict diet which means no eating of breads, alcohol, sugars (other than from things like fruit or honey) and no grains like cereal. Also, I don’t eat much dairy (no milk etc..) That has helped me be symptom free and medication free which is great, but that’s because I have UC.

      hang in there, things will get better for you,

      -Adam

  9. AnnSeptember 23, 2013 at 7:25 am #

    Hi Adam, I just recently had a terrible flare. I started the SCD 2 weeks ago. How long have you been symptom free and medication free since being on this diet? Do you ever “cheat”? So far, I have not cheated but am scared to death about the flare returning! Still on 35 mg of predinison and tapering 5 mg each week as long as flare does not return. Looks like I will never be off the Asacol but that’s okay as long as I have a life!

  10. SallySeptember 23, 2013 at 11:04 am #

    Hello, just saw your site and just wanted to briefly outline my story to give people struggling a bit of hope. I was diagnosed with colitis in 2002, started out from a stomach bug then was told I had ‘IBS’ eventually diagnosed as colitis. Had 7 years of bleeding every day, never managed remission, only ever took asacol and prednisone briefly, tried every exclusion diet, had to leave my job, couldn’t go for walks etc etc. Came off the contraceptive pill in 2009 at the same time I started drinking a lot of hot water and lemon (read about it’s alkaline properties) and my colitis, out of the blue, stopped. 4.5 years and a 2 year old on, I haven’t had a single symptom since, not one episode of cramps, diarrhoea, anything :) can eat whatever I like after years of seemingly being intolerant to everything.

    A lot of doctors maintain this is a condition that you are stuck with for life. I really believe we all have a trigger and of you don’t give up hope and keep researching and trying things you will crack it eventually.

    Sorry to hijack your post but just wanted to spread a bit of hope. Wishing you all luck :)

    • BevSeptember 23, 2013 at 1:51 pm #

      Fabulous Sally and spot on!

      I too believe that we don’t have to be ‘stuck’ with UC forever. We each have to find what works for us, and stick to it!

      Thanks for the great post! We all need to know this.

      Bev

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