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

My Friends Call Me Pooper but Katrina Will Do Just Fine

Introduction:

My name is Katrina but you can call me Kat :)

I’m 24 and was officially diagnosed with UC two years ago; but have had it for three.

I’m still a little lost.

Some more about me:

I am an avid fan of music; live shows are my all time favourite thing. If it’s a boy band I probably love them. I try to keep a good sense of humour; life is too short not to smile every day :)

Symptoms:

  • Frequent urgency
  • Blood in my poop
  • Sometimes mucus
  • Cramps
  • Fatigue
  • Frequent trips to the washroom

All the fun things!

My Story:

I first noticed something was wrong three years ago while I was living with my dad. I noticed that there was some blood in my stool but didn’t think too much of it at first. I was under a lot of stress at the time with family issues, school, work etc and thought it was some sort of laceration or something.

After six months; I started noticing more blood and that it was clotting so I made an appointment with my doctor. He referred me to a Gastroenterologist closer to where I live and after undergoing a colonoscopy I was diagnosed with UC. I had absolutely no idea what on earth Ulcerative Colitis was and what it meant for me now that I had it. All my doctor kept telling me was that it was incurable and that it wasn’t brought on by stress or bad eating habits.

I was put on asacol and it helped keep my flares down for quite some time. It wasn’t until my second year of college that I really became affected by my UC. I was going to the bathroom 3-5 times a day and had major cramping. It became really disruptive having to leave the classroom multiple times to go to the washroom. Not to mention, waking up constantly during the night with cramps and having to go to the washroom. I went back into see my GI and he prescribed me a higher dose of Asacol and sent me on my way. It helped for a little while but as of recently; my symptoms have returned.

I’m no longer covered insurance wise under my mom’s health insurance and can no longer afford my medication on my own. So my GI put me in a study for this new drug that is supposed to help. They say it is like Asacol but a much higher dose, so it travels down to the bottom part of the colon better. So far it’s been slow going, my symptoms will be present one day and gone the next. However, I am noticing a slight improvement.

I’m concerned because I feel like I’m not going to get better. I’m just going to live my life in fear of having an accident. I’m emotionally drained and am still struggling to understand exactly what is happening to me and why I can’t seem to get better.

I feel so embarrassed all the time whenever I have to explain to my friends or my co-workers what it is I have. I mean who really wants to hear about other people’s poops?

I just want to understand better what is happening and find a way to feel better. Any kind of advice or words of wisdom will help. I know no one else who has this, so I feel really alone. My mom is trying her best to understand what I’m going through but sometimes she feels like I’m being over dramatic about it; when really I’m in a lot of pain.

Medications / Supplements:

I’ve done Asacol. It was working for me quite well but now that I’m over 18 and no longer in school; my mothers health insurance doesn’t cover me.

As I mentioned above; I was put into a “study” for a drug that is supposed to be similar to Asacol but a much higher dose. It is supposedly supposed to dissolve faster and travel farther down into the colon. It is taking a little bit longer to take affect then the doctor would like; so depending how my next colonoscopy comes out, I may have to try suppositories.

written by Katrina

submitted in the colitis venting area




11 Responses to My Friends Call Me Pooper but Katrina Will Do Just Fine

  1. Adam
    Adam August 17, 2014 at 12:55 pm #

    Hi Katrina,

    Thanks so much for sharing, and I’m hoping you can start to get some longterm relief soon.

    While I was just posting your story to the site I couldn’t help but think of where I was exactly 5 years ago with my colitis. At that time, i’d been through nearly a year of post diagnosis life, several medications, and not knowing where to turn. I felt like I had no control over UC and I was pretty bummed out.

    But, things did change. For me that meant changing my diet. If I was in your shoes, I’d consider it too. I’m sure your GI doctor(s) aren’t saying anything at all about diet and/or probiotics being helpful to treat UC, but to that I disagree and think that type of thinking will only lead you to where you’re currently at. And it sounds like you’re in need of something more.

    So, do yourself a favor and spend a few minutes reading a page I created on this site with reviews from many others who follow the diet thinking that I follow. here is the page:

    http://www.ihaveuc.com/specific-carbohydrate-diet-reviews/

    And, if you are interested in reading up on probiotics, which many UC’ers from this site do, here’s a page you should check out as well with a heep of reviews on a popular one: http://www.ihaveuc.com/renew-life-ultimate-flora-critical-care-probiotics-reviews/

    Best of luck to you, and keep us posted on your progress,

    —:)) Adam

  2. Bev August 17, 2014 at 2:39 pm #

    Hi Kat,

    What Adam said. The doctors still tell everyone with UC that changing your diet, reduction of stress, and taking probitiocs and/or other supplements will not help, when in reality, they actually help more than the meds do!

    What the doctors really mean is that changing your diet, reducing stress, and taking supplements and/or probiotics cost less and the money does not go to the pharmaceutical companies, thus, no doctor kickbacks.

    We’ve all been where you are, and we all understand what you’re going through. Every day in a flare feels like 10 days. You will come out of this…we always do…and then, life is wonderful again.

    Welcome to this site! Ain’t it great?!

    Cheers
    :)

  3. Paulette August 17, 2014 at 2:46 pm #

    Hi Katrina
    It’s really wonderful that you found your way to Adam’s site.
    He has managed to make lemonade from lemons ,and has become a great inspiration to those of us who share this disease and site.
    I know it’s so easy to get discouraged because often this condition won’t leave us alone!
    Adam is so right to encourage you to discover and follow the SCD diet.
    You may still have to take meds but just maybe, this diet can relieve some of your symptoms and you can reach remission.
    That ‘s our goal here for all of us to reach remission.
    There is no known cure, so all we can do is keep experimenting with options.
    My words of wisdom would include to keep communicating with others with UC.
    We are a supporting community and no one understands what you are experiencing better than us.
    Maybe your mom could read some of the comments here as well, to understand your pain and frustration better.
    Also there is a site called Healing Well.com that may be very beneficial to you as well for UC.
    You are not alone Katrina!
    Hope you are feeling better soon!

    • Katrina A August 18, 2014 at 9:12 am #

      Thank you for the words of wisdom and support :)

      This website has been such a help already and having others to reach out to helps!

      I showed my mom this website and showed her a few other articles on UC and I think she understands better now. Not to mention, I understand too! It feels better knowing more.

    • k August 20, 2014 at 4:46 pm #

      There is a cure for ulcerative colitis. It is rather drastic – -surgery. I had the cure in the 1970s as emergency surgery. There have been some challenges, but nothing like it would have been trying to live with uc for the last 40 years. Uc is such an emotionally and physically devastating condition, I admire anyone living/coping/moving forward with it.

  4. Adrianna August 17, 2014 at 10:01 pm #

    Hi Katrina,
    I’m 19 and I was diagnosed with ulcerative colitis 3.5 years ago. I recently found a dog tag that says ‘lil poopin genius’ and attached it to my keys. I saw it as some comic relief to the disease.
    I’m in a similar situation to you as my treatment plan all depends on my upcoming colonoscopy.
    My goal is to try to heal my gut as much as possible before my scope to avoid having to use stronger medications such as remicade. Currently, I am taking: mezavant (same as asacol), and using mezalamine enemas to heal any ulceration in my gut. I am also taking folic acid, vitamin D, omega 3, palafer (very strong iron), vitamin C, and am using a probiotic called VSL 3, which has billions upon billions of healthy bacteria. Also, I eat a gluten-free diet.

    When my gut flares up I use cortifoam enemas. They are steroid enemas which have next to no steroid side effects. (I avoid prednisone like the plague!) I have also used mezalamine suppositories in the past, which really help with the urgency.

    Anyways, just thought I’d comment as I am also a young girl with UC going through the same things as you. Hopefully my treatment plan will give you some ideas. Maybe we can keep in touch about how our scopes go!

    • Katrina A August 18, 2014 at 9:09 am #

      That tag sounds hilarious; I may need one myself.

      Thank you for your kind words; it helps to know someone else close to my age is dealing with the same thing I do :) I’m my GI’s youngest patient as he likes to remind me.

      I would love to keep in touch if you would like that as well :) feel free to private message me anytime!

      • Adrianna August 24, 2014 at 11:27 pm #

        I’m still trying to figure out the direct messaging but I would love to keep in touch :)

    • Amanda C
      Amanda August 25, 2014 at 1:11 pm #

      HAHAHAHA! I love this Adrianna!! If you see one again will you get me one? I’ll send you money if you post it to me :D

  5. Bruce Robinson August 19, 2014 at 1:06 am #

    Hi Katrina,
    I have had UC for 25 years, I had no idea what UC was until I got it. I was bleeding for 13 months, explosive stuff. I was put on 100mg of steroids, they didn’t make any difference, then I was put onto Cyclophosphamide (not sure if it is spelt correctly). None of the medication made any difference, however as I was reading my bible a verse jumped out at me from proverbs “when I was silent about my sin my body wasted away and my strength dried up as in the fervant heat of summer” a few days alter this I heard a speaker on the radio make a statement to the effect that people who as children suppressed their emotions ended up with one of three illness in adult life. The one that caught my attention was UC. I have since been on a journey to get in touch with my emotions and to safely express them. It has not been easy. I also found that everytime someone prayed for me my condition improved. After 13 months of treatment with no success a guy prayed for me and withn 5 daysthe bleeding had stopped. It has been a long journey but today I am in remission and have been for the past 5 years with no bleeding for the past 17.
    If you want to contact me then I would be happy to talk to you.
    All the best for your journey, there is hope.

    Bruce

  6. Amanda C
    Amanda August 25, 2014 at 1:09 pm #

    Hey Kat! I totally understand where you’re coming from. I also feel like the people close to me don’t really understand. I believe that they are trying, but sometimes even I feel like I’m being dramatic until I think “NO!! THIS REALLY SUCKS! AND ITS PAINFUL! AND I HATE IT!” I am also 24 so I get that too! “Do you want some?” “No thanks, I can’t have gluten” “Oh! Are you celiac” (I’m going to start saying yes!!) “No, I have a…… bowel disease”. It’s easier than saying colitis. If I say colitis, they want the details and… no one wants that in the work lunch room. After bowel disease they usually look at me awkwardly and then turn away.
    If you’re looking for someone to chat to, shoot me an email :) amanda_049@live.com

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