Living with Crohn’s Disease

Crohns InfoGraphic

Crohn’s Disease seems to be the new “big” disease springing up in the world. Commercials for the prescription drug Humira have targeted patients; you may have heard the semi-recent news of Sam Faiers, a British TV celebrity, who announced she had been diagnosed with Crohn’s. What gained most traction on the Crohn’s Disease front, however, was a photo of a bikini-clad former model with an ostomy bag which went viral.

Within the family of Irritable Bowel Disease, Crohn’s Disease is an autoimmune disease where the body’s immune system attacks the gastrointestinal tract. It can affect the entire digestive tract, but in most cases causes inflammation in the colon or ileum, which is the area where the small intestine connects to the colon. The inflammation can result in mild to severe abdominal pain, vomiting, diarrhea or constipation, weight loss, blood loss and anemia, fatigue and weakness, abscesses and fistulas. In addition, flare ups can create moments of panic and embarrassment when one needs to run to the bathroom at a second’s notice. Millions are affected worldwide.

I’m one of those millions. I was diagnosed around the age of 15 (in 2001-02), and Crohn’s was just a blip on the radar to most doctors back then (at least in east Michigan). Very little was known about the disease and even less was known regarding treatment.

It came about because about a year prior I started having really bad abdominal pain, especially after taking a bite or two of food. Sometimes it made me simply uncomfortable, sometimes I’d be writhing on the couch and other times it would hurt so bad I’d throw up. Blood tests revealed I was anemic, and I was taken to a doctor and prescribed iron pills. Barely able to swallow the horse pill, my body would then reject them, causing excruciating pain in my gut and eventually vomiting. Doctors thought I might have ulcers, so they ordered more tests.

I had an CT Scan of my digestive tract (yay, disgusting chalky barium drink) and also an upper GI scope. After finding no ulcers, my doctor performed a colonoscopy which was when she believed I had this disease I had never heard of. To make a long story short, the medications they had back then for Crohn’s were extremely archaic and did not help me. Eventually, my Crohn’s symptoms lessened, even though I would deal with an occasional flare up.

Photo by Justin McKee

(Photo by Justin McKee)

Today, I would bet doctors would say my Crohn’s is in remission. I rarely have flare ups anymore, thankfully. When I do, I’m reminded how lucky I am to not deal with it every day like some people.

When I used to talk about having Crohn’s Disease, I’d usually get blank stares or confused looks. Although that still happens from time to time, it’s getting harder to find someone who doesn’t know someone dealing with it, doesn’t know someone who has been diagnosed, or at least hasn’t heard of Crohn’s at all.

My partner in crime, Justin, also has the disease, but saying it’s bad doesn’t really cover it. His Crohn’s is advanced and aggressive. He’s gone through all the popular medications and infusions, including Remicade, Humira, Imuran and the newest infusion, Entyvio. Some have worked for a period of time, others have failed. In late 2013, after a colonoscopy at the Mayo Clinic in Rochester, Minn., Justin’s team of doctors suggested two options: remove the colon or receive a temporary ileostomy to see if the colon heals. Opting for the latter, he underwent surgery in March of 2014. Though he had a few complications throughout the trial period and his Crohn’s symptoms never completely went away, a colonoscopy in January of this year proved the procedure had created the wanted effects. The ileostomy was reversed, much to Justin’s delight.

However, after suffering through staph and C.diff infections, the Crohn’s returned in its full force according to colonoscopy results last month. Because of those results and increasing symptoms, we are headed back to the Mayo Clinic this week for additional tests and – most likely – surgery to remove his colon. This means he will have a permanent ileostomy in place for what could be the rest of his life.

That sounds terrifying, I know, but in his case the pros outweigh the cons. No colon pretty much means no more disease, which means no more medications and infusions, no more trial-and-error procedures, no more debilitating pain and fatigue, no more rushing to the bathroom like his life depends on it.

From the research we have done and from other bloggers who write about their experiences without a colon, all have been positive and take a “why didn’t I do this before” approach.

Justin and I have high hopes if he ends up going under the knife again.

On social media websites, there are many terms related to Crohn’s fighters and Crohn’s associated symptoms or conditions, and many are used as hashtags: #crohnie, #nocolonstillrollin, #ostomates. Within the Instagram IBS/Crohn’s/Colitis world, users with and without the disease post photos of their bare stomach, using the the hashtag #getyourbellyout, which is a campaign used to raise awareness and show support within the community.

#getyourbellyout

My #getyourbellyout post on Instagram.

If you search the hashtag, you’ll see many photos from people who have scars, ostomy bags, and post-op wounds. It opened my eyes to not only see thousands of people struggling with those diseases, but see them banding together as a community and providing support for their fellow fighter.

I recently joined that community, posting a photo of my and Justin’s stomachs.

Although I’ve lived with minor Crohn’s symptoms for years, seeing Justin as bad as he’s been since I’ve known him (and especially with the upcoming surgery) has made me want to spread awareness and show support for others dealing with the disease’s hardships.

If someone diagnosed with Crohn’s or Colitis finds this blog post and is reading, keep up hope, keep up the fight.

Hopefully it won’t be long before a permanent treatment or cure is found.

-K

Want more from Expected Miracles? Follow me on Twitter @ExpMiracleBlog

About Karin

Journalist, singer, reader, movie fanatic, photography buff, GVSU alum, wanna-be-Brit, Crohn's fighter, Coca-Cola addict, animal lover, not a kid person, hater of winter, Michigander
This entry was posted in Health and tagged , , , , , , , , , . Bookmark the permalink.

10 Responses to Living with Crohn’s Disease

  1. Jean says:

    Hi –

    I total colectomy on 3/19/2015. This was after trying everything to keep my colon.

    I have an ileorectal anastomosis; my rectum was left and the small intestine was connected to it. Might that be an option for you?

    I’m feeling better than I have in years. And no more nasty medications!

    Wishing you the best.

    Jean

    • Karin says:

      Hi Jean,

      Unfortunately the J-pouch is not an option for Justin, because the disease destroyed the rectum.
      He had the colectomy surgery on May 22 and is still recovering in the hospital now. I can’t wait to see him improved.
      Thanks so much for your comment. 🙂

  2. Kathleen Moore says:

    My son Sean has Crohn’s, he got sick at 15 yo and is 32 now. I have watched him suffer so much, it is a vicious debilitating illness!! He has been thru lots of treatments, Remicade worked for awhile then he grew antibodies to it! He is currently on Humaria but I don’t see where it has helped him at all. He has a very severe case pain, nausea, vomiting, diarrhea. I feel so bad for him, hard to have a relationship when your sick all the time. He doesn’t like to talk about his illness with anyone and can’t stand the thought of having a bag! Some guys feel not masculine at the thought of the surgery. Your very lucky to have each other, someone who understands! Keep getting the word out their, people need to be informed! Thank you!

    • Karin says:

      Katheen,

      Thanks for your comment and I’m sorry your son is dealing with this. It’s an awful disease.
      Humira didn’t work for Justin either, and according to one of his doctors it’s weaker than Remicade. Possibly ask about Entyvio? It is helping many people.
      I can understand his thoughts about the bag. Justin hated it too. But here’s the thing: it’s worth it to stop dealing with the disease and its symptoms. And honestly, it’s a convenient way to go about your business. Instead of rushing to a bathroom when you might not have one near, the bag allows him to plan when he eats, which means emptying the bag when he can be around a bathroom.
      Researching other people’s experiences also might help him feel better about the idea. Some people on YouTube also have videos regarding ileostomies.
      Good luck!

  3. Evon says:

    I have struggled with Crohn’s disease for 21 years. After a bowel resection to remove a fistula my Crohn’s went into remission. Unfortunately it came back 2 years later in a different part of my colon. I am on Imuran to control my Crohn’s and my flare ups are under control. Stay strong my fellow Crohn’s sufferers and let’s hope they find a cure or a cause sometime in the near future.

    • Karin says:

      Evon,
      I’m glad you’re finding a way to manage your Crohn’s. Someday there will be a cure.
      Thanks for reading and commenting!

  4. Susan Hollaway says:

    My son lost his colon at 14 and lived with a j pouch until he was 23. That failed when the crohns returned in the rectal area. He underwent an illeostomy in 2009, it was reversed in 2010, the crohns returned with branching fistulas. In 2012 he underwent a second illeostomy which he will have for the rest of his life. In 2014 he married and he and his wife are expecting their first child, a boy, this summer. It has been a long road. He has been living with crohns longer than he has lived without it. It is an ugly disease which people don’t really want to talk about which is why I love this page. I am just the mom of a guy that got sick at 9-1/2 and this week turns 29.our entire family has lived with this for twenty years now and it’s about time there are pages like this one with stories that we can all relate to. I pray all goes as well for you both.

    • Karin says:

      Susan,
      Wow, what a journey! It’s so encouraging to hear your son is happy and healthier after everything he has gone through. I’m very happy for your family and it gives us hope to hear it!
      Thanks so much for your comment.

  5. Heya! I’m at work browsing your blog from my new iphone 3gs! Just wanted to say I love reading through your blog and look forward to all your posts! Keep up the superb work!

Leave a Reply

Your email address will not be published. Required fields are marked *