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Living with Ulcerative Colitis

Over 10 years ago, I was diagnosed with Ulcerative Colitis (UC).  It was a scary diagnosis.  I had never heard of this disease and all I knew was that my digestive system was in serious distress.  It seemed like I was just given a life sentence of discomfort and exile.  How could I lead a “normal” life with a disease that had me constantly concerned with where the closest bathroom is?

If you’re not familiar with UC, it is a chronic inflammation of the lining of the large intestine/colon that causes small ulcers to form.  The ulcers produce mucus and often bleed, which causes a fair amount of discomfort during what we call a “flare.” Sounds lovely right?  

The most frustrating thing about UC is that there is no definitive cause.  Research has shown that it is possibly linked to genetics, environmental factors, auto-immune disorders, you name it.  But there is no concrete evidence to show one thing or the other or a combination of things.  Because of this, treatment options aren’t concrete either.  There is a lot of trial and error with various medications including steroids and immunosuppresants, all of which can have some pretty serious side effects.   

And because of all of these things, I often feel like this…

Sarah_Colitis

Living with UC is no picnic.  When I’m in the middle of a flare, I often feel lethargic, depressed and achy.  Getting out of bed can be difficult, let alone working or exercising.  I’ve been on a variety of maintenance medications over the years, some of which have led to serious side effects.  

In 2007, I found myself hospitalized for 2 days because one of the medications caused acute pancreatitis, one of the most painful things I’ve ever experienced.  I currently am on a combination of a 5-ASA anti-inflammatory drug and steroids to keep my symptoms at bay, but some days that doesn’t even work.  

It hasn’t been fun and it hasn’t been easy, but unfortunately these are the cards I’ve been dealt so I’ve had to learn how to cope.  And thankfully, I still have many days that I feel like this…       

034 Mile 13

I wanted to share my story of living with UC and hopefully encourage more people to talk about it.  For the first few years of my diagnosis, I very rarely talked about it.  Frankly, I was embarrassed!  Who wants to talk about their poop problems??  But at some point I just got over it.  I needed to talk about it.  I didn’t feel good and I didn’t want to make excuses for why.  I wanted people to know the truth and also to educate people who might not be aware of UC.  Over 700,000 people are suffering from UC, why is no one talking about it?!?

 The real turning point for me was when I started running and exercising more frequently.  UC plays a part in everything I do because I have to listen to how my body is feeling and not push myself too hard on bad days.  It also means knowing where bathrooms are at all time, which is why training for races can often prove difficult and discouraging.  I find myself having to map out routes where I will pass public places if needed.  I also have to carefully plan out my pre-run meals and leave enough time before going out for things to work through my system.  There have been way too many close calls!  It is because of this that I often struggle with motivation and putting in the miles…it’s easier to just avoid training, but that is never the answer.

In early 2012, I found Team Challenge, the endurance training and fundraising program for the Crohn’s and Colitis Foundation of America (CCFA).  Not only was this a great way to improve my running, but I was able to fund raise for an organization that is supporting research for UC!  The group was amazingly supportive and they helped provide tips for exercising with UC.  (Read all about my experience here.)  I also couldn’t believe how many people came out of the woodwork during the fundraising process to tell me that they either suffered from the disease or knew of someone who did.  It was empowering and opened up an amazing dialogue.  Again, why weren’t we talking about this before?!? 

One of my hopes with RAD Living is to create some sort of dialogue and also show people that a UC diagnosis isn’t the end of your life, it’s just a lifestyle change.  You can still do whatever you set your mind to, it just might be in a different way or with some restrictions.  I’m proof of that!  I’ve completed a marathon (albeit slowly), 5 half marathons, and I can pick up 220 pounds.  HELL YEAH!  I might never be the strongest or the fastest, but I’m still doing it and you can too.  

So plan on hearing about my ups, my downs, my bowel movements, my inflammation, and whatever else randomly comes to mind in the future about UC.  I want to be honest about this hateful disease and I hope that sometime in the future a cure will be found.  But until then, can you tell me where the closest bathroom is???

Do you have Crohn’s, Colitis or any other chronic illness that has made you make a lifestyle change?  I want to hear your story!   

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11 Responses to Living with Ulcerative Colitis

  1. My best friend’s son was recently diagnosed with Crohn’s. It’s been a real roller coaster ride for their family. I remembered reading about your story and told her about your blog. Thank you for being so open and sharing both your struggles and successes. It’s very inspiring to know people can and do live very fulfilling lives in spite of this disease.
    Lisa recently posted…Maybe tomorrow…My Profile

    • Thanks so much for your kind words 🙂 I’m sorry to hear of your friend’s struggle…it must be really hard for a parent to watch their child go through that. Fingers crossed we can find a cure soon!

  2. I can EASILY relate to you as I have terrible digestive issues, I don’t even know where to start. I do not have a large intestine because of my issues. Five years ago I had my entire large intestine taken out during emergency surgery because I was about to humanly combust. My colon twisted into a knot. It was the most excruciating pain of my entire life – I swear the pain was/is worse than child birth. Ever since then, I have had to deal with copious other digestive issues, and extreme pain, that often leave me feeling much like you do, if not worse… I get bloated all the time, double over in pain… etc, The problem is – it all goes in waves. So for a few weeks I will be fine, with minimal bloating and/or pain, but then for two weeks, it’s incontrolable and I just want to die – however, not really. It stinks when I finally think I have a handle on things but then – BOOM… I feel like I am going to explode again.

    That being said, digestive enzymes, probiotics, HCL and miralax have been helping me tremendously. Also, eating high protein and pretty low carbohydrate (only veggies) also works for me. I cannot eat wheat, dairy, gluten, sugar, nuts, and fruit because they all cause terrible reactions. I have lived this way for awhile now though so I really don’t miss those foods. Plus, I know if I were to eat them, the pain and bloating would be even worse! But I do need to eat something! LOL!

    So I am now giving you a virtual hug! I am in the same nauseating boat as you! We just need to land on a tropic island full of hot men who give amazing back massages! LOL!!! – yep, not sure where that came from?! LMFAO!
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    • Wow, wow and wow. Thank you so much for sharing your story. I can’t even imagine what you have gone through and to see how positive you are through your site everyday is even more inspiring knowing this. I agree that the most frustrating thing is thinking maybe you are cured for those times that symptoms are at bay, to then have your entire system go out of whack for no reason.

      I’ve recently been restricting my intake of grains, dairy and sugar and I’m amazed by the changes I’ve seen. I just wish the doctors would open their eyes and start accepting that food might just have something to do with this!!!

      Thanks again for sharing your story and when you find that island….let me know!!!!
      xoxoxoxox

  3. Nice to read that other people are experiencing the same things I am. I also have UC for about 10 years and it has been a time of big ups and downs . I too have found some comfort with dietary changes , probiotics and exercise . In fact I am running my first Disney half marathon in January 2014! I look forward to reading your tips for exercising with UC as some mornings are much worse then others . Thanks for the motivation and for speaking up on something that is usually hush hush !

    • Thank you for sharing as well. See, I’ve been reading your blog for a while and I never knew!
      Hope to meet you over WDW Marathon weekend…I’ll be running the half as well 🙂 Good luck with your training!

  4. […] Living with Ulcerative Colitis […]

  5. […] really been focusing on clean eating and avoiding grains, dairy and sugar to help with my colitis, and thankfully it’s been working wonders!  However, because of this I’m thinking […]

  6. Hi Sarah! I thought this article you wrote was great! You seem to really have a handle on what you are dealing with. I was just listening to the Mickey Miles Podcast episode 87 and a listening said they were diagnosed with UC a few days ago and are doing the Dumbo and are worried about stopping for bathroom breaks often. I wrote on the Mickey Miles Podcast wall and recommended they visit your site to learn about your story and how you deal with the illness. You said you take steroids. How much do they have you on? I have an autoimmune disease that I have to take immunosuppresants for. I was also on steroids for an extended period of time 10 years ago and had to go on an off them here and there. Steroids are great, but also bad. The side effects are killer. One of the things I started doing when I learned that I had this disease was go to the woodbridge running store, bought my first pair of “running sneakers” and hit the treadmill. That’s when I started to run. But I haven’t considered myself a real runner until 3 years ago when I started to run outdoors and embraced a running lifestyle.

  7. […] of the clean eating wagon and spiraled into a cheese board, beer, bread and cupcakes…sigh.  My digestive system has actually been doing really well, but today I’m feeling like absolute crap and paying […]

  8. […] encouraged by Sarah who was inspiring me with her own running. Like Sarah, I also suffer from IBD and it was so inspiring to see her pursuing her fitness goals and dreams. She really did give me […]

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