Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

In Need of Encouragement

Hello All…
My name is Shay I have had ulcerative colitis since I was 17, I was diagnosed while still in High School It took a while and many doctor visits finally I was sent to A GI and he was able to tell me exactly what the problem was.

It changed my life Dramatically.

I use to be such a fun loving teenager now 25 and cant even seem to leave the house. My friends wonder why I never go on trips with them camping, beach trips, road trips, I cant bring myself to do anything. I can deal with all the symptoms of UC but when it comes to uncontrollable bowel movements it stops me from EVERYTHING Im terrified Ill have an accident. It is very few and fare between Im in remission It doesn’t matter what I do I’m always sick. this decease has taken over my life and my emotional well being. I am so embarrassed of UC I can’t even tell the person I plan to marry exactly what my symptoms are. I am certainly Broken and so unhappy. I guess I’m just needing some support from anyone who knows what we go through.

Medications:

Asacol 400mg 3x a day
Remicade infusions

-Shay


Shay’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!

You Can Join too, click here for details




7 Responses to In Need of Encouragement

  1. Adam
    Adam April 11, 2011 at 2:03 pm #

    Hey Shay,
    It’s alright that you are embarrassed about UC, that’s normal for most of us at some point.
    Something that has always been interesting to me in reading everyone’s stories here is how great UC folks can be at hiding their symptoms and disease from others, especially the loved ones or wives, husbands, boyfriend, girlfriends etc…
    That’s exactly what I was maybe considered an expert at prior to being diagnosed. I was living with my girlfriend (now wife of 3 yrs) and everyday I would wander into the bathroom for a 30 minute or so session. usually a few times a day. I’m not sure exactly what she thought at the time, but for sure it must have been strange to her.
    (she confirmed this when I came clean with everything. I think it was almost a relief to her when I told her the truth about what was happening in there, as it was not nearly as crazy as some of the ideas she had)
    I guess I’m trying to say you’re not alone with the feelings you’re having, and I bet all will work out well for you and the person you want to marry!

    one final note, about a year ago, a story and several comments came in that I think you should read. you can find the story and the comment here: http://www.ihaveuc.com/i-have-a-uc-and-keeping-my-secret/

  2. Sylvia April 11, 2011 at 6:42 pm #

    Hi Shay, I’m 70 yrs.old and have had U.C. for 33 years, that is, since my last
    child was born. It is a very difficult disease and seems to never let up without
    something going on all the time. I have never been on any medications because
    they just make me worse no matter what it is. However, I can say without a doubt
    that God has sustained me. I don’t hide anything when people are curious as to
    what is going on with all these bathroom runs. I tell them I have Crohns as they
    seem to understand that better than U.C. I don’t go anywhere much, but I do read,
    garden a little, play the piano, and try to keep my home in order as much as I
    can. While I would like to do many things even at my age, I find that “going with
    the flow”, so to speak, helps me to not flare as much. If you fight something or
    get depressed over it, it seems to rev things up. I understand completely, though,
    just how you feel. There is a verse in the Bible that you can totally rely on, and
    that is: “ALL THINGS work for good to those who love the Lord, who are called
    according to His purposes.” Romans 8:28….At some time in life we all in this
    world will have to face something one way or another and our “lifeline” in
    response to it is to find faith in God and rely on His strength. I love to go
    to church but that has been hampered a lot in the last 10 years because of the
    U.C. However, there are a lot of good faith programs on T.V. such as “Love Worth
    Finding” and “In Touch,” as well as Dr. Schuller’s “Hour of Power” that comes on
    TBN each Saturday night at 8:00 p.m.–central time. God bless you and may you
    find hope and strength for each day…..Sylvia M., Mississippi
    P.S. From Psalm 46:1….”God is our refuge and strength, a very present help
    in time of trouble.” …..Never Give Up!

  3. Paul Willoughby April 12, 2011 at 3:58 am #

    Shay,
    your feelings are perfectly natural. I completely understand your feelings. I don’t go camping anymore either. Going fishing was something I always enjoyed and I took a break from that as well but have started that up again. I would suggest trying out some anti diarhea meds and see how that works for you. If you are going somewhere, take them to give you confidence if nothing else. It has worked for me and I can take road trips, airline trips, etc. Be honest with your loved ones. I think as you get older, the embarrassing feelings may pass. Best wishes.

    Paul

  4. Tony (UK) April 13, 2011 at 4:11 pm #

    Shay you have absolutely nothing to be ashamed of, you are suffering from a very serious but manageable condition, if people you come into contact with cannot feel natural human empathy towards you and what you are suffering, that is a weakness in them not you. I know exactly what you mean about being scared to go out for fear of accidents and embarrassment but you can overcome the fear if you do as I do and plan where you are going and research where you can find a toilet if urgently required. I also dose myself up with pain killers before venturing out, which seems to work for me. I’m sure if you are open with the people who are close to you, you will find as I have they are very understanding and will go out of their way to help. Most people have not heard of Ulcerative Colitis or as in the case of my sister who believe it or not is a nurse, has a very poor understanding of it. I find that initially tell them you have Ulcerative Colitis which they think they know everything about, an upset tummy then tell them as in my case you have Crohn’s Disease, that usually does the trick as everyone’s heard of that, you can come back to the subject later and educate them. Don’t get depressed, easy to say I know but things will get better, they will.

  5. Jonz
    Jonz V. Stoneroad April 13, 2011 at 5:26 pm #

    Hi Shay,

    This site was created for people like us who have UC living with us and to share and offer support for one another. I would be more concerned if you weren’t experiencing this range of confusion, frustration, embarrassment, and stress. This is perfectly normal and the more you are able to discuss this the better it becomes.

    Remember, we cannot control what is happening to us but we can control how we feel about it and one way is to share with that special someone such as your future spouse. Hopefully, together you both can face this head on together and know this is a lifetime challenge in which you both will become stronger as a single unit.

    I wish you both the best and thanks again for sharing. I do hope you are able to get through each day and make the most out of what life is offering. Visit this site quite often if you can as well. There are many people here whose stories are both inspiring and quite encouraging.

  6. Shay April 18, 2011 at 2:41 pm #

    Thank you all so much for the support and encouragement! It was Much needed, I have decided If I want to beat this I need to be proactive and try new things in order to find what works best for me. I am going to start the SCD diet I have heard nothing but good things about it. I am also going to work on telling my family and friends about what is going on instead if spending all my effort hiding it and myself. thank you all. If u have any tips on the SCD diet u think I should know Please share!
    Shay =)

    • Adam
      Adam April 11, 2012 at 6:11 pm #

      Hey Shay,

      I’m wondering how you are doing with your UC? How is everything going for you? Have you had some success with some new treatments? Let us know how you are! It’s been a year since you wrote the story above…can you believe that?
      I hope you are doing well,

      Adam

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