This Was Supposed To Be My Year…

Bio:
I am a 40 year old female active IT Professional. I am an avid runner, hiker and kayaker and love the outdoors. Camping with friends is where you’ll most likely find me on the weekends. In 2011, I completed an incredible journey to get healthy; I lost 105 lbs over the course of 11 months. I avoided diabetes and high blood pressure. Unfortunately, about 4 months into my journey, I started experiencing some strange symptoms. I put it off for a while but finally got in to see my doctor. We made diet changes and tried Immodium AD: neither worked. I received a referral for a GI and had a full colonoscopy with biopsy in April of 2012. I was diagnosed 2 days later with Severe Ulcerative Colitis throughout my entire colon.
My Symptoms:
Severe watery diarrhea (I go between 10-20 times a day)
Lack of sleep
Severe abdominal pain
Rapid (unintentional) weight loss
Wasting
Bleeding (recent development)
Dehydration
Lack of nutrition
Dizzyness
Nausea (from abdominal pain)

 

My Story:

Since being diagnosed with server UC my life revolves around a toilet. This is a major drag for me as I love to run, hike, kayak, backpack and camp. We are (or were) very active people who love the outdoors. Now my main thoughts are “where’s the nearest bathroom” and “what if I can’t make it in time?” I have learned to carry a ‘spare package’ at all times now.

My husband and friends are very supportive, though my husband is having a hard time coping with my bad days. My doctor is great, really nice and supportive. They are very concerned with getting my symptoms under control without hospitalization.

I have had 2 “unfortunate incidents”: a small one at work (was able to wash undies out and dry them in the server cabinet) and a major one in a grocery store. Very humiliating. Since then, I have no shame. I openly joke about my incidents with family to lighten the mood when moments get tense. Some family (family closest to us) have no idea how to help/support me. They just don’t get it and I don’t have the energy to attempt to educate them either. So there are times when I feel very isolated: frustrated and depressed.

I am most concerned about getting my symptoms under control and going back to enjoying my active lifestyle. Right now, everything is on hold as my doctors try to get me under control. No running, no training, no heavy exercise. I’d love to be able to go anywhere and not have to immediately scope out the restrooms. To be able to go on a road trip and not have a panic attack because the next facilities aren’t for 50 miles. To be able to actually sleep through the ENTIRE night (haven’t had more than 2 hours of solid sleep in months)!!

Where I’d like to be in 1 year:
Symptom / Flare FREE!! I’d LOVE to be in complete remission!!! I want to be able to hike Mt. St. Helens and go backpacking again. I want to run another half marathon, perhaps even train for a full marathon.

Colitis Medications:
Asacol 4800mg /day for 2 months: Did not work for me at all
Prednisone: 30mg /day for 1.5 months: Not really working, but currently used as a buffer until Remicade kicks in.
Remicade: 1st infusion 7/2/2012. 2nd infusion 7/15/2012

written by Nicole

submitted in the colitis venting area




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5 Responses to This Was Supposed To Be My Year…

  1. Bev July 5, 2012 at 5:39 pm #

    Hi Nicole…and welcome here!

    This website is pretty great, especially because us UCers ‘get it’! What you said about family not really understanding. It’s like evryone still expects you to be the same as you always were before the disease, right? Also, having to explain to everyone who asks you ‘what is UC?”. It gets SO tiresome!

    Then there’s the ‘accidents’. That’s gotta be the worst part of UC, no? It’s like pure panic when you have to go RIGHT NOW! I’m an avid exerciser for 25 years now, and I do it anyway…even when I shouldn’t. I’m so tired of not being able to do it hard, like I used to.

    Anyway, visit the site often. It will really help you because I think we can only truly understand this disease, if we actually have it.

    Cheers:)

  2. Midwest Dave
    Dave July 5, 2012 at 6:03 pm #

    Nicole- I know how awful all of this is. I was on Remicade for almost 6 years. My suggestion to you to help your current situation is to get a good probiotic, increase your vitamin D or D3 intake, read up on the Specific Carbohydrate Diet, try L-Glutamine, fish oil, turmeric, check Lucy’s Kitchen Shop for their vitamin supplements for people suffering with uc -they’re wonderful & have helped me greatly. Also maybe introduce yoga or tai chi into your life. You can get this under control. Your life will get better. I was hospitalized twice within a year before they started Remicade. I wasn’t responding to prednisone either. I was facing surgery when I opted for the infusions. They did help put me back on track. At the same time, I started the SCD. That made me feel even better. It’s a long, arduous, frustrating, depressing, defeating hill and it takes time. But hang on and you’ll get there. I’m 42. I’ve been dealing with this for over ten years. Just focus on your dreams & goals and let nothing stand in your way. Things will get better.

  3. Slingshot July 6, 2012 at 12:43 am #

    Hej Nicole!

    I’m also an IT-Professional, it’s kind of practical to be because the computer is a great tool which enabled me to do the things I’ll tell here:

    Invest TIME in YOUR HEALTH!

    To get from 10+10 Severe watery diarrhea (10 at daytime and 10 at nighttime) to 3 times a day is worth the investment. I like bulletpoints, so here are a few that helped me:

    – Lower your number of work hours! 75% is good 50% is better -> very important since you have to focus on your health, food and sleep
    – Leave some of your “musts” in favor of getting in bed no later than 22:00 every day for two months
    – Let weekends be “holy” rest, sleep in, turn off your cell.
    – Buy, read and follow Elane or Natashas books about SCD
    — I take 2 omega3 pills and probiotic lacto bacteria every day
    — I eat FAT fish minimum 2 times a week, Mackerel, wild Salmon (NOT farmed since they are fed antibiotics and grain), Eel
    — I also roasted duck several times in the owen to get animal fat and a tasty dinner.
    — Fermated vegetables: sauerkraut, kimchi (with low amount of chilli)
    — I make my own 24h-rested yoghurt and crème fraiche

    This is how I did it, as a warning I want everyone with UC to stop and think about the situation for a while, do not continue in your “squirrel-wheel” or at your treadmill, but dare change the situation. If you change nothing, nothing happens, if you change something, something happens.

    All best wishes from Sweden!

  4. Maggie July 6, 2012 at 5:12 pm #

    Hi, Nicole. Great response from Slingshot and everybody else. No matter how much research I continue to do on this disease, I still learn from the wonderful people who post here plus their upbeat natures. I was on Remicade for awhile and it helped me instantly but I had to quit using it because of out-of-pocket expense. Mostly I take care of my UC symptoms naturally but do use methotrexate (chemo, but it’s also for arthritis), and Canasa suppository, which helps when my symptoms aren’t too severe. Best of luck to you, Nicole.

  5. Active UC'er July 6, 2012 at 9:04 pm #

    Hi Nicole,

    I just wanted to share my story, as it is very similar to yours. I too had recently turned my health around (was about 10 pounds from BMI “healthy” weight for the first time in my life! I hadn’t quite lost 100 pounds so congratulations to you on such a great accomplishment!

    Summer of 2010 I could go out an complete half an Olympic length triathlon at any random time and was thinking of actually training for a full. I also took up kayaking (whitewater) and greatly enjoy the outdoors. Feb of 11, I started having bloody diarrhea several times a day. Diagnosed in July of 2011. It’s been a rollarcoaster of treatments ever since. I’ve gone from great shape to awful shape and gained 60 pounds from prednisone and inactivity. I can’t go kayaking anymore (no bathrooms), can’t go running anymore (bouncing) and even my gym workouts are very limited from the side effects of the drugs. I get dizzy so easily. I’ve imagined going camping and just can’t see myself having my nightly boughts of pain and diarrhea in or near a porta-potty or camp toilet. It’s sooo frustrating and kind of soul crushing to not be able to do what you enjoy most. I know these aren’t encouraging words, but I just wanted to say that you are definitely not alone.

    I don’t know if you scoped out this site, but there are quite a few people on here that are avid sportists. One competitive bicycler and one competitive marathoner in addition to weekend warriors. So there is hope you can get your life back! Keep your head up and keep trying to find the answer! As for road trips, have you ever considered getting a camping toilet? I have one that literally looks like a standard bucket but it has a toilet seat in addition to a lid. You buy special bags that you place in the toilet and then later dispose of. I hope to never have to use it but it is there.

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