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

Hope for Other UC’ers

Eve H fullIntroduction:

I am a 36 year old mother of 3, married 16 years this year. I have had UC for the past 12 years, but kept it in remission for 6 with the SCD diet.

Some more about me:

I’m from Canada, love hiking, camping, the mountains, reading and movies.

Symptoms:

Currently recovering from my first massive flare in 6 years.

Hope for Other UCers

I’m writing because I want to extend some hope to those of you who are suffering from this horrible condition. It is the most difficult thing I’ve had to deal with in my life, because it attacks me at a very basic level. If I’m having a flare, I have a harder time being who I am, mom, cook, employee, wife and very busy woman all around! I think the one thing that is most important for all of you to know, and to understand is that you are not alone, and you can do this. Take each day as it comes. Whether you’re in the worst flare of your life, or you’re just back in another same-old-flare-you-always-get rut….the most important thing you can do for yourself and those around you is to stay in the present. Don’t worry about what will happen tomorrow, or the next day. Get through today.

If all you can do today is lie down and drink liquids, then that is your day today. If you can kind of move around but can’t keep anything down, focus on getting hydrated….that is your day today. Even if it seems like there is no end in sight and this will never end….don’t focus on the bad. Remember that right now somewhere else in this world wide web, someone else feels exactly like you do, maybe even worse, and they too feel the exact same way. You are not alone. You can only do what you can do today. So do it. Make easy decisions for yourself. Today I feel awful. If I don’t feel better by tomorrow, I will go see my doctor. This is an easy decision. Making simple decisions and plans makes your life easier.

For example, you could say, today I feel awful, so I’m going to rest as much as I can and see how I am tomorrow. Don’t jump on the internet and google every cancer or infection known to man. Just take control of what you know, and what you can do. Anything less than this will make you feel isolated, sad, depressed and alone. 12 years of this crap ( sometimes literally) has taught me that stress and worry make it worse. So control what you can, and let go of the rest. Everyone has bad days, and everyone has good days. Just take them as they come, and do what you can do.

Remember to live. You’re miserable and stuck at home? Watch a movie you love or read a book. Stuck in the bathroom 90% of the time? Make it as comfortable as possible and go with it. My kids (9, 11, and 14) are well aware that some days, the only way to talk to mom is through the bathroom door. My lovely 14 year old even made me ginger tea and brought it to me.

Don’t beat yourself up over not being able to control it, or get better faster. Just go with it. I’m not saying it’s easy, it’s taken me a long time to get to this point. But the minute you decide to only worry about what you can do TODAY, a weight comes off your shoulders and one of those knots in your stomach untangles. I just wanted to share this because I think it is such an important realization, and one that has helped me immensely over the years. There are always going to be people in your life who choose not to understand or be compassionate, and sometimes it will help you to let go of them too. You are important, you are needed, and you love and are loved. Think of these things, focus on what you can do and you will find yourself healing much faster than you might expect. I hope this helps someone else as much as it has helped me.

Medications/Supplements:

Probiotics are a mainstay of my treatment. I have found them very helpful. Most of my very bad flares have required a short course of prednisone and strict adherence to the intro SCD followed by recovery. However, at least twice I have found that this hasn’t worked, in which case a combo of cipro and flagyl cleared it up effectively, as long as I follow it with plenty of probiotics and strict adherence to SCD guidelines. In the past I tried asacol, sulfa drugs, 6mp, and Imuran with little effect.

written by Eve H

submitted in the colitis venting area




6 Responses to Hope for Other UC’ers

  1. bev October 17, 2013 at 5:12 pm #

    Thanks for the fab post!!

    Probiotics and L-glutamine keep me in remission too.

    Cheers,
    Bev

  2. Richele
    Richele October 17, 2013 at 5:41 pm #

    Hi Eve!
    Thank you for your positive, encouraging words. You’re right! One. Day. At. A. Time. Sometimes that’s all we can do, and that’s ok.
    Take care, be well :)
    Richele

  3. Casper October 18, 2013 at 2:22 am #

    Thank you for such inspirational words, it is so true!!

  4. Erica October 18, 2013 at 9:00 am #

    wonderful post! I have controlled my stress levels for past three years as well and try to be Aware and Live in the moment vs worrying about things I CANNOT change has worked wonders for me. Three years no meds ever…… going strong. Best piece of advice I got was to change my way of thinking and I did. For every thought we have is important. And for every thought we can release the good or bad…… I release good/ happy thoughts. The Brain is SO POWERFUL.

  5. Joe H
    Joe H. October 19, 2013 at 10:55 am #

    Hi Eve,
    I just was diagnosed in Nov 2012 with what I surmise was a mild case of UC. A colonoscopy and two months on 2 types of mesalamine an the prednisone routine cleared it up completely. I was fine for over 4 months, then in Aug this year I found out what a flare up was … BIG TIME!
    I spent over 2 months at home running between my bed and the toilet. After not getting a haircut for months I looked and felt like a cave dwelling recluse. My moods were hard to control and depression was setting in, only through praying and the prayers and encouragement of my church friends on Facebook, was I able to get through the toughest days. I’m part way through the prednisone and things are much better. I’m eating like crazy, exercising, and going out fearlessly.
    Getting UC at the age of 66 is no walk in the park, but I don’t even want to think about how it would be if I was still working and raising a family. I feel so sad for the young people that have to endure this for the rest of their lives.
    Being in a good mental & spiritual state has a great positive effect on your physical well being, so thanks for the great pep talk, it’s something all the UCer’s need daily. Always keep that great attitude.

    Peace & Blessings,

    Joe

    PS anybody with links to good diets for UC, let me know.

  6. Eve H
    Eve H October 21, 2013 at 12:01 pm #

    Hi Joe,

    Thanks so much for your story! I know exactly how you feel. Some days it is so hard to find the motivation to keep going…..which is why I really emphasize finding the things you CAN do as opposed to looking at what you can’t. I know a lot of people say it, but practicing positivity really does save your life (and your sanity)! Stay strong in mind, body and spirit!

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