Hello all, my name is Kyle and I am a teacher from a little town in Washington State. It has been quite some time since I put an update out on iHaveUC, and I apologize for that, but I haven’t had a whole lot to report regarding my, formerly UC, now Crohn’s disease.
What makes this blog such a special one is I have just past my 5 year diagnoses anniversary!!!! (Woohoo!) Which my journey with IBD has been filled with a lot of ups and downs, started with a whole lot of downs, but has really turned in the last couple years to a lot of highs, both with my Crohn’s disease and my life. To catch some of you up, I was diagnosed with “mild” UC back in 2012, would end up shortly after my diagnoses spending 29 days in the hospital because of a severe UC flare as well as a contraction of a bacteria known as C.Diff, over the next year I would go on every major biologic for my UC, the meds either showing no improvement or causing allergic reactions, about a year to the date of my first major flare, I would enter into my next severe flare, along with the return of the C.Diff bacteria, this causing me to miss a month and a half of my new job. So needless to say, the first year and a half of UC was filled with a whole lot of low points.
During the last major flare, I would have an abscess form, along with a fistula, I would have a seton placed and my doctor would call my disease, Crohn’s Disease. Hopefully that catches everyone up, that’s the quick version. J After my last flare, my GI was out of options and made a statement that scared the crap out of me, he said, “Kyle, if this cycle continues, we are going to have to really consider surgery.”
The last thing I wanted was to start taking things out of me. I had a friend who had followed the SCD to treat their UC and had been in touch with all of you amazing people, including Adam, and heard the success stories of the SCD. So my wife and I made the decision, along with the support of my GI, to go full blown into the SCD diet and go off all major medications (I still take probiotics daily). This wasn’t the easiest decision, but we knew we had to try. We followed the phase list of the SCD diet to the letter, waiting at least 2-3 before entering any new foods and making notes of any bowel/tummy/body issues that seemed off.
It is crazy to think that was 3 ½ years ago now, but since starting the SCD in November of 2013, I have not experienced any major setbacks with my Crohn’s disease. Praise the Lord! I can’t sit here and say that everything has been paradise, I still have symptoms that show my Crohn’s is still active. I deal with daily cramping, most of the time increasing throughout the day as more food goes in my gut, I still experience loose bowel movements every now and again, urgency can creep up on me, and I still have my seton placed, which brings its lovely gunkyness and odor at the end of the day. (Seton peeps, you know what I am talking about)
However, I will take the little things knowing that I am still holding on to the big things. (i.e. my colon) It has been amazing to see the reactions of Dr’s who I talk to when I tell them my story, I know that the SCD isn’t for everyone, and people have tried and it hasn’t worked, but for some reason, it has done the trick for my Crohn’s and I couldn’t be more thankful for it. My wife has been my rock through all of this, she has made SCD not just a treatment, but a lifestyle for my family. She has taken, what some would call a difficult way of eating, and turned it into a personal challenge to make the best LEGAL food that she possibly can and she does a pretty amazing job!
So let me catch you up on everything outside of Crohn’s disease. My wife and I have purchased our first home, we got our first dog, we had our first kid (Kamden), we took our first trip across the country, and this summer we will pass our 6th anniversary together. Yeah… It’s been pretty amazing! Looking back, I can’t believe where we came from, thinking back to those long nights in the hospital room, thinking “how can I live life like this?” To now not only living life, but being able to experience life to the fullest.
In the end, I still have Crohn’s disease. There are still things in my life that I am hindered by due to not only this disease, but also the way my wife and I have chosen to go about treating it. I feel like I am in the best place I can be with my Crohn’s disease. For the first year and a half of my life, I got a lot of, “How are you feeling?” type questions and even though those things still come up in conversation, I get a lot more questions about my life, rather than my condition. Well… Those of you who are parents know, the questions nowadays are far more concerning my two-year-old son than me ;) Which is just fine by me. J Crohn’s may be the disease that I have, but it doesn’t define who I am!