Ulcerative Colitis Tips


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Is It All in My Head?

Amanda with her partner

Amanda with her partner

Meet Amanda:

Where to start… well, my name is Amanda. I live in Toronto, Ontario, Canada with my partner, my 2 cats and my 2 sugar gliders. Currently I work as a receptionist for a really great Travel Company, although I hope to be a Wedding Planner in the next few years.

Some more about her:

I love to plan and design weddings (at the moment, these aren’t real weddings). I also volunteer for a great organization The Brides’ Project and watch way more Say Yes to the Dress, My Fair Wedding, Wedding SOS, etc than someone should.

Amanda’s Current Colitis Symptoms:

Currently, I only have gas and bloating when I eat something “bad” (dairy or gluten, etc)

Is It All in My Head?

In August 2011 (can’t believe that was 3 years ago!), I noticed a little bit of blood in my stool. Unsure, I waited until December 2011 to finally tell my doctor. I received my first colonoscopy in February 2012. This was the worst thing I ever did for my colitis. My symptoms went from a tiny bit of blood before my colonoscopy (a negligible amount in hindsight) to what I have dealt with for the last 2.5 years “Severe Refractory Proctitis”. (My doctor switches from saying colitis to proctitis, hasn’t been more than 35cm of disease… so I’ll stick to UC for simplicity sake).

For the past 2.5 years I tried prednisone, salofalk enemas (Mesalazine), salofalk suppositories, more prednisone, naturopathy, diet change and then more prednisone which I was on 10mg for the last year. Even with all of this prednisone, I never went into remission and my symptoms were still terrible.
I was terrified to try immunosuppressive medication as I already had an awful immune system. About a month ago, I agreed to follow this very interesting bedtime routine.
1. Grind the contents of 3 capsules of entocourt (9mg) using a mortar and pestle.
2. Pour into a glass with ½ a salofalk enema and 40ml of water
3. Stir.
4. Put into enema syringe, and… You know the rest.

While this seems to have been a “miracle” treatment for me, I can’t get past the feeling of being sick.
I’m not talking about the cramping, discomfort, pain or embarrassment… I’m talking about the mental sick.
I used to LOVE going out for ice cream, or brownies, or tarts, but I can’t do anything of those thing because I have had to essentially cut out dairy, gluten and refined sugar. My anxiety is really high all the time, I feel unmotivated (which is strange because most of my friends think I am incredibly motivated) and most importantly I am always mentally exhausted.

I don’t know how to get past it. I go on this website almost daily because I feel connected to you guys. No matter how much I try and explain to my boyfriend or my family, they just don’t understand like you do. I get excited (is that the right word) when someone at work says “my Mom has colitis too”. I try to do things to keep myself busy, working, gym, going out, spending time with pets, my partner, etc.
What do you do to get past the mentally draining aspects of having UC? Even though I’m feeling better… I don’t feel better.
Thank you in advance!

Medications / Supplements:

Prednisone -> 40mg worked, 10mg didn’t… got so chubby on this medication
Salofalk enemas -> didnt notice a difference
Salofalk suppositories -> didn’t notice a difference
Naturopath -> Lead me in the right direction regarding cutting out gluten, dairy and sugar… I also cannot eat potato chips, anything deep fried or tomatoes
Juicing -> after watching Super Juice Me…. time consuming, but tasty! Did it help my UC? Not sure, I didn’t keep it up for a long time and certainly didn’t drink ONLY juice for 28 days.

written by Amanda C

submitted in the colitis venting area




Ontario

8 Responses to Is It All in My Head?

  1. Pam September 14, 2014 at 9:17 am #

    I feel sad for Amanda. I feel like I will never get well.
    I have had ulcerated colitus since 1986. I worked for the
    Airlines, and believe me I know where every bathroom is around the world. I take asacol and I feel it doesn’t help. The doctor pushed for humira and
    I said no. I play tennis three times a week. What is weird is that I never
    get sick before , durring, and after tennis. I am trying to start the SCD
    Diet, but I am so used to eating badly. So I am eating less, and trying to
    introduce a few good foods. Oh, by the ways, when I traveled a lot I
    Used to pop prednizone like candy. It was the only way I could function.
    Now I don’t stay on it long.Now I found out my ten year old granddaughter may have colitus. She gets a test next week. Please say a prayer
    for her. I really appreciate this site and Adam’s positive encouragement.
    Thanks, Pam
    ,

  2. Sher September 14, 2014 at 9:57 am #

    Amanda,

    I just have to say you are NOT alone! I just came out of an exhausting flare this spring. Been feeling physically much better for several months and have gained all of my weight back. However, like you I have not gained back my ‘motivation’ or ‘creativity’ I feel like doing nothing a lot! I don’t get it either, but sorry I don’t have the answer just wanted you to know you’re not alone. I have been giving myself permission lately to be unmotivated though so I don’t feel guilty :-). We deserve a break once in awhile ~ sher

  3. Marlee September 14, 2014 at 10:40 am #

    Congratulations Amanda!, for making some changes to your diet to help control your disease. Any time a person gives something up, though, it’s important to replace the thing you’re giving up with something else you CAN have, so you’re not feeling so deprived. There are TONS of recipes online for dairy, gluten, and refined sugar free desserts. Get a high-speed blender and start making your own non-dairy ice cream treats with plant milks and fruit, make popscicles, gluten-free muffins, brownies, etc., and store individual servings in your freezer for a quick treat. As far as the mental aspect of this disease goes, it sounds cliche’, but the more time goes by, I think you just learn to accept that you don’t feel as good as you used to sometimes, but you do what you can do. I’ve never suffered from anxiety, so don’t know what that’s like, but really, you can’t change the past or the future, so it’s important to just focus on right now, and doing the best you can now. If you don’t feel well today, listen to your body, rest, and hopefully tomorrow will be better. I did want to mention, make sure your doc is checking your blood counts every so often to check for anemia. It can make a person SO tired! I would also suggest seeing if there’s a support group that meets in Toronto so you can meet others in person who are dealing with the same disease. I have found that helpful. In the States, we have the CCFA (and for anyone reading, the link is http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/ ) but I don’t know if there’s something similar in Canada.

  4. Barb September 18, 2014 at 8:08 am #

    Hi Amanda,

    I do mediation. You can just google on this on you tube. I try to do at least 2 x a week. When I am starting to feel stress or anxious I always take 3 deep breaths and say these 2 words Peace and Serenity. Once you accept the fact that you can not control the things around you. You will be at Peace =) Give a shot! Good luck =)

    Best Wishes
    Barb

    • Lynn September 24, 2014 at 12:40 pm #

      In your post you mentioned feeling anxious and stressed. My son is 20 years old and going on 3 years with UC. A college junior and so stressed and anxious and has a hard time sleeping and yesterday he told me he feels angry and depressed. I believe in the gut brain connection with this disease. The gut inflammation transfers and affects the brain like it is in my son. My heart breaks for him and all of you suffering. We are trying to get the inflammation under control but having a difficult time. Have tried many of the diets, SCD, gaps and currently AIP. I think we will have to try some meds or else we will lose him. He’s at his breaking point.

      • Mary September 25, 2014 at 2:01 am #

        Hi Lynn,
        I have spoken to you before on another thread. I truly feel the pain you are going through. The turning point for our son this year was when he went back on l glutamine, Astaxanthin, probiotics and the antibiotic which dr Borody prescribed for him which is called Rifaximin.. He is still on 6 mp (50mg) and I am ok with this now, even though it has proven useless, because my son wants it.
        I became the nagging mother and without realising what I was doing, I was destroying the wonderful relationship I have with my son. For our situation at home, it was important to allow my son to make his own decisions and support him. When I do not nag him, he makes the right decisions for his health. When I nag him, I find he drinks heavily, stops the supplements and eats the wrong foods.
        I know your son and your family with get through this and I hope you find a fantastic doctor who is not just about medication, but one who thinks outside of the box!

  5. Joanne September 24, 2014 at 7:36 am #

    Hi Amanda,
    I know that feeling.

    There are a variety of things you can do for yourself that may or may not help.
    your naturopath may be able to help find a way.
    You can use visualization and meditation. Like all things this will take daily practice but may really pay off for you. I use this daily and even when I was in the hospital. I often picture a beautiful health colon!
    I also use the serenity prayer ( you can drop the God part if this does not fit you) which sometimes I have to slow down and really focus on the words so I can really “let go”.
    I have found ( I am a mental health counselor) that most people lack some spirituality in the lives and when they get in touch with that – their lives are more peaceful.

    Get a thyroid test. Often women would come to my office who presented with symptoms of depression. I sent everyone of them for complete work- up with their GP. A percentage of them had other physical issues that when taken care of – poof- no symptoms of depression.
    Lastly – FOOD IS MEDICINE! and it can be great fun. Find someone who will join with you and support you while try the SCDiet . I was an ice cream snob – I no longer crave it. I came recently to this website and the SCD diet. I wish I had found it years ago – I may ( or may not) have avoided going from moderate to severe and almost losing my colon two weeks ago. You are young ….think of the food changes as just something new and innovative that you are gaining not losing. Become a food snob for your health. My great Aunt Rose (died at 97) told me “if you don’t have your health you got nothing”.

    Lastly – if you need counseling find a person who is open and really listens to you. The counselor can help you explore your thinking and you may learn getting in your way. Then you can decide what your next step will be. A good counselor is a hope merchant who will support you through the process.
    Peace to you,
    Joanne

  6. Tita September 25, 2014 at 5:24 am #

    I think one of the worst parts of this disease is that you don’t get a day off, it’s always somewhere in the back of your mind, especially if some food worsens your symptoms, or when other people eat what you cannot but would love to. I guess you just take it day by day, and on bad days just tell yourself that it will pass.

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