Fighting an Invisible Foe

Guest post featuring Justin McKee

Following our journey to the Mayo Clinic last month, I asked Justin to write a guest post about his personal account of Crohn’s Disease and undergoing a colectomy. Here is his story.

The flames of sickness

Everyone at one time or another knows what it’s like to have an upset stomach. Whether it is from the flu or some digestion issue due to an undercooked/contaminated food item, most people have experienced discomfort of some form in their abdomen.

For people who have Crohn’s Disease, the varying degrees of pain and discomfort are far more frequent and can be life altering.

Crohn’s Disease is a sickness that is classified under the Irritable Bowel Disease (IBD) category of illnesses alongside Ulcerative Colitis and Irritable Bowel Syndrome (IBS). Crohn’s is a chronic disease where affected people’s immune systems are essentially tricked into attacking any part of the digestive tract from the mouth all the way to the rear end, causing mild to catastrophic inflammation. In a vast majority of patients, Crohn’s affects just the small and large intestines.

In my case, Crohn’s has cost me nearly 10 years of my life due to devastating inflammation of the large intestine — an organ that I recently had removed in its entirety in an attempt to restore my health back to what it once was.

It’s been a long journey.

I was diagnosed with Crohn’s disease in June of 2006 after what seemed like an endless bout of diarrhea and weight loss. Since then, my life has been a roller coaster of trying different medications to control my disease. I say control because Crohn’s Disease has no known cure.

(photo by K)

(photo by K)

Shortly after my diagnosis, I began the nigh endless trial of finding the right medication to control my disease. Herbal supplements, probiotics, steroids such as Prednisone and Entocort… the list of failed medications goes on longer than I’d care to admit. By the time I reached the end of that list, I had lost more than 40 pounds and could barely attend school. My health had declined to the point that my local doctor referred me to the Mayo Clinic in Rochester, Minn.

Because I was switching doctors, I had to go through all of the same tests I had previously for a fresh look at my disease. This meant that I needed to fast for days and drink a considerable amount of nasty bowel prep before the tests could even be completed. The doctors always say that the bowel prep doesn’t taste too bad… the doctors who say that haven’t tasted it. I’d rather eat liver and onions for a week than go through one night of bowel prep.

Once the tests were repeated, my doctors knew how severe my disease was and considered surgery because the situation was so dire. Given that I was young, I opted to try to control my disease through an immunosuppressant called Remicade rather than start cutting away pieces of my bowel with permanent consequences.

Immunosuppressant medication weakens the specific part of your immune system that is attacking the bowel. Seeing the list of side effects these medications have can be daunting… with a worst-case scenario of lymphoma developing. Thankfully, the risks of that happening are abysmally low.

Ultimately, I made the right choice. Remicade lasted for roughly 8 years without too many hiccups. I wasn’t entirely symptom free, but I could work and travel with little issue. It seemed like I had gotten my life back. Remicade seemed like a miracle drug and, for many to this day, it’s a viable solution to control Crohn’s.

Unfortunately, the human body is unique and mine decided that building an immunity to Remicade was a good idea.

Yeah, not so much.

I hadn’t run out of options yet, so I switched to another medication called Humira. Unlike Remicade, Humira had little to no affect on my body at all and it was a matter of months before I was back at the Mayo Clinic in very poor health. After a gauntlet of tests, my doctors saw that my colon was torn to pieces and barely functioning.

At this point, my doctor called in a surgeon to review my case and to discuss options with me — I only had two: a colectomy (complete removal of my colon) or a diversion (where I live with a temporary ileostomy bag and let my colon heal for a few months). My doctor told me there also was a new medication out on the market called Vedolizumab that looked promising to control my disease.

Choosing the conservative route, I decided to go through with the diversion and to give Vedolizumab a chance. Living with the ileostomy was fairly miserable for the first few months. An ileostomy is basically the same thing as a colostomy (the one most people have heard of), it’s just set up a touch differently. It took a long time for my body to heal from the surgery because of the immunosuppressant medications, and the mere fact that it takes forever for me to heal from even simple wounds. Just about anyone with Crohn’s can attest to the difficulty to recover from wounds; it simply takes forever to heal.

I gave the diversion a chance for approximately 9 months, and in that time I was able to let my body become adjusted to the Vedolizumab. I repeated tests at the Mayo Clinic yet again to see how my colon looked and, to my relief, my surgeon and doctors saw that everything was looking pretty good. I went under the knife again to reverse the ileostomy and I looked forward to having my life return to normal.

Well, I wasn’t quite so lucky.

After several infections during my recovery period and worsening symptoms in my bowel, my health went right back to where it used to be.

Noticing a clear trend… my surgeon and I both agreed that the next step should be something more drastic. Of the two options that I was given a year prior, this time I chose to have my colon removed permanently.

Posing for a post-op picture. (photo by Justin McKee)

Posing for a post-op picture. (photo by Justin McKee)

Now, as terrifying as a colectomy sounds… after speaking with people who have had it done and considering the fact that my disease has only ever been in my large intestine, the outlook for this surgery was bright. With the colon gone, a permanent ileostomy would be necessary to have regular bowel function, but thankfully I was already used to living with one because of the previous diversion surgery.

I was scared to go through with something so permanent, but with the comfort and love of my family and my girlfriend (who also has Crohn’s — how ’bout that?) I was able to make it through. A lot of prayer and community support went into this last surgery. I’ve never been so touched.

So, here I am. I’m currently recovering at home from the colectomy, and to be honest, I feel great other than the surgical pains. From the moment I woke up from surgery I could feel a difference. That slow burning in my abdomen was gone, and it’s a great relief to feel peace down there after suffering for so long.

When I was first diagnosed with Crohn’s Disease, there were few people who could relate to how I was feeling. Nearly 10 years later, I’ve met a lot of people who suffer from either Crohn’s or some other form of IBD. Doctors like the professionals at the Mayo Clinic are fully aware of the increasing numbers of those affected with bowel diseases like mine and many advances in medicinal care have been made to fight back.

So, if you or a loved one have been diagnosed or are experiencing symptoms of IBD, despite the fear and despite the pain, I want you to know that there’s hope. Keep your head high and your loved ones close. Don’t let your disease define you and you’ll walk through the flames of sickness to arrive at a better place.

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
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