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Weird, Painful and Somewhat Embarrassing Disease – Yeah, Colitis!

Introduction:

Hi – I’m Chellie. I was diagnosed with UC on May 23 2013. I’m a mother of a fantastic 21 year old daughter, and I have the most wonderful husband, friend, and soul mate.

Some more about me:

I haven’t had hobbies for the longest time – working too many hours. However, since my diagnosis, I have been aiming to get back into writing music, singing and playing the piano. I love to cook, and love spending time with my family and extended family. Oh and I just love love love real estate.

Symptoms:

Just gotta love the double over pain – constantly running to the toilet – and then noticing blood and mucus in stools – if you can call them stools – as it is more like rapids with weird stuff mixed up in it all.

Weird, Painful and Somewhat Embarrassing Disease

I’ve joined to say “Hi” and meet other people with UC.

It’s a crazy time in my life trying to read everything I can and understand what is going on with my body. Things I read seem to make sense – until I read something else – which completely negates what I just read. I feel in control and then completely out of control again and feel completely useless with the lack of information I actually have. so I try things I read – which seem to work – for a day – then I seem to get worse – or is that better……it’s just all confusing.

So I joined the Crohn’s and Colitis Association and went to my first IBD forum – which turned out to be information on Crohn’s – as I’m getting excited about the food and how this helps you get into remission – then after 2 hours of listening – writing copious notes, and getting extremely excited – a lady in the audience asked if it worked with UC – and to my dismay – no it didn’t.

Does food help in any way?

I’ve read eating foods that help inflammation are good. Of course drinking loads of water is also supposed to be good…. and when does the higher fiber start. at the moment I’m on a low fiber diet – only because it give me less pain. When do you really know you are in remission – clinical remission is different to mucosal remission. If this actually really exists. Seen too much reading and just getting more and more confused.

I see that this site has an EBook for sale – I think this may actually be my next port of call.

I met this wonderful lady at the IBD forum who put me onto this website! thanks for the support – the website seems great!

written by Chellie

submitted in the colitis venting area




8 Responses to Weird, Painful and Somewhat Embarrassing Disease – Yeah, Colitis!

  1. Adam
    Adam July 1, 2013 at 2:50 am #

    Hi Chellie,

    Thanks for being a new member of the site!

    Being only a month and a few weeks since your diagnosis, I’m sure you’re still getting used to lots of things especially the mental games that UC can play. But it really seems that you’ve got a positive spirit from your writing, and don’t ever lose that no matter what you see going down the toilet. Some positive thinking every once in a while will take you a LONG WAY! I’d even argue it will get you further down the road to recovery than anything else, more than any doctor’s advice, medicines and most certainly my ebooks. So don’t ever lose that.

    As for your question about remission, and what is that, when does it come etc…:

    Again, like almost every single part of UC (our beloved disease), remission is a super gray area in terms of a definition. My own definition is based on my quality of life and symptoms. When the hard log type poops are happening on a daily basis one or two times a day (maybe a three timer every once in a while) that is a part of remission to me. When I don’t feel any cramps, no joint pains, getting good sleep, again, that’s part of remission in my book.

    But, a whole other side which is equally important is the mental remission. By that, I’m talking about living life without the worries of colitis, “where’s the closest bathroom”, talking freely without being embarrassed, and an overall general sense of happiness with life. That as well is all part of what remission is to me.

    And the best part of all is that it can for sure be reached. Maybe not overnight (actually, it rarely if at all happens overnight for anyone) but it sure is possible.

    Keep up the positive spirits, and keep us posted on how things go for you,

    -Adam

  2. Ann July 1, 2013 at 11:40 am #

    Hi Chellie, All the things that Adam says are so true. I have had the disease for 25 years, in and out of remission for different reasons. I have tried Mesalamine, Asacol/Purenethol, Canasa, Prednizone, changes in diet, and evoo to help me get out and stay out of a flare. I seem to never be able to find that perfect cure. However, about two weeks ago I started taking the Renew Life probiotic combined with L-Glutamine that Bev refers to on this site. I am almost in complete remission and am getting tons of energy back. It is still too soon to say but I am thinking this might be my cure. Do not give up. What might work for me, may not work for you but it could be a possible avenue for you to try. Good Luck!

    • Adam
      Adam July 1, 2013 at 6:46 pm #

      Ann,

      Way cool to hear you are finally getting some noticable relief, and I hope it continues forever!! Way way cool. (Nice skiing picture too!!:)

  3. bev July 1, 2013 at 2:18 pm #

    What Adam and Ann say!! Two of the best people to learn about UC from for sure.

    I am the Bev, of which Ann speaks…I am in remission for the past 14 months on one probiotic capsule per day of ULTIMATE FLORA CRITICAL CARE by RENEWLIFE, on an EMPTY stomach, and then no eating for at least half an hour…AND fermented L-glutamine powder (mixed in a tsp of juice for taste) daily as well, again on an empty stomach. I cannot believe that after 14 straight years on meds (asacol to be more precise), and feeling absolutely terrible that whole time, that I feel so good and normal now, on MO MEDS at all!! Thank goodness I tried the natural way…I never thought it would ever work!

    WELCOME and cheers,

    :)

  4. Sharon July 1, 2013 at 5:06 pm #

    Ha Ha Bev said MO MEDS..as in she don’t take NO MO MEDS :)

    Hi Chellie. I totally understand what you mean about conflicting information. One person swears by eggs and the next says no animal products. One says lots of meat and one says vegan only. Yogurt..no dairy….etc etc. Even the professionals can’t seem to agree. I had UC for 23 years and I am still making changes as I understand my body and my needs more. For the record it has nothing to do with being over 40 now :) The best thing you can do is to start a food journal and to try one thing at a time and give it time to work. I see so many people add 4-5 new meds/supplements at once. If they feel worse, they don’t know if it is one of the things they added causing the problems or if non of the new things work. For example, iron supplements alone can cause cramping so adding a high dose of iron on the same day you start probiotics plus supplements plus herbals plus meds from your doctor can leave you with cramps but what caused them? Is it the UC or the iron? The confusion is frustrating. Try your best to go slow instead of a shotgun approach.

  5. bev July 1, 2013 at 9:49 pm #

    Mo meds…lol

    :)

  6. Mary H
    mary July 2, 2013 at 4:10 am #

    Hi Bev, I had asked you on another post how much and which L-Glutamine you are using and later could not find the post to view your answer. I am taking Pure Encapsulations L-Glutamine 4 scoops twice a day in water. Am interested in which brand and dosage helped you. Thank you.

    • bev July 2, 2013 at 7:29 am #

      HI Mary,

      It is North Coast Naturals Fermented L-glutamine powder. I use the unflavored one and mix it in a tad of juice.

      :)

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