Thursday, July 11, 2013

my crohn's disease story

Dealing with an autoimmune disease has its challenges, but blessings as well. Here is my story . . .

On Chrismas Eve, 2006, I miscarried our child at 11 weeks. My doctor wanted me to come in for a D&C. I have always leaned toward the natural route, so I asked if I could let my body take its course. My doctor agreed as long as I would come in for a weekly ultrasound. So, for 7 weeks I let my body take its course and returned for an ultrasound each week. At the end of the 7th week, I stopped bleeding, but my uterus was not clear. She insisted on a D&C. I complied. As careful as hospitals are with cleanliness, I believe it was during this procedure that I picked up C. dif. A small percentage of people already have C. dif. residing in their gut and when they take antibiotics, it can come to life and cause problems. In my case, I hadn’t been on antibiotics in years. The other way people get it is generally from hospitals. People die from C. dif. every year. It’s a nasty infection. In my case, C. dif. triggered a digestive disease.

C. dif. takes time to build and overtake your gut—for me about 4 weeks. At the end of March I thought I had come down with food poisoning. I could barely make it to the bathroom and I was running there 25 times per day. Having no history of a digestive disease, my doctor gave me medication to stop diarrhea. It didn’t work and actually made things worse—because the medication was antibiotics. I continued to decline over a 2-week period and my husband had to take time off of work. I couldn’t leave the house. I could barely get out of bed. I was in so much pain and so weak. I have experienced natural childbirth (the 24-hour kind)—for me, this pain was so much worse. I think it was worse because it went on for weeks with no reprieve. My doctor didn’t know what to do at this point and he admitted me to the hospital on a hunch. I had an emergency colonoscopy and had my diagnosis of Ulcerative Colitis within an hour. The GI doctor that did my colonoscopy said I had one of the two worst looking colons that he had seen in his career. Yay, me. I was only 31 years old. I am forever thankful to my doctor that admitted me on a hunch. Later, I learned that I would have died had I waited much longer.

I was immediately put on a high dose of Prednisone—a steroid that makes you feel like a different person. But, it did save my life. I was in the hospital for 5 days. I had my own room and every doctor that visited me suited up from head to toe to prevent the spread of C. dif. I am forever grateful to friends who brought my family meals, watched my kids so my husband could visit and brought me non-food related gifts to cheer me up! A couple gifts that stand out are soft slippers and a disposable camera so that I could scrapbook my hospital stay! Everyone knew that I loved to scrapbook! Another friend (thanks Kristen!) brought me a long article from the Internet on what Ulcerative Colitis is and how to treat it. (This was pre-iPhone and iPad.) Bringing me some “answers” was so meaningful to me. (The GI doctor on duty had simply given me a pamphlet and told me what I had—all in the space of 5 minutes.) I was later diagnosed with Crohn’s disease based on some blood work. At this point, all of my symptoms have stayed in my large intestine and not traveled further up my digestive tract—I am thankful for that!

Since April of 2007, I have had a flare up every January and June or July. My doctor wanted to put me on Remicade—an extremely strong immune suppressant drug. After doing a ton of research and talking it over with my husband, I opted not to go that route. Cancer runs rampant on my side and I’ve read too many articles of people getting cancer after only a few years of being on an immune suppressant drug. I didn’t want to take the risk. So, I started reading lots of books all about grain-free and sugar-free eating. I will list some of my favorite resources below. The dietary changes helped, but I was still having flares every 6 months and having to resort to Prednisone. I have since found that my body can only tolerate so much almond flour and that I need a couple of grains in my diet. I added in brown rice and oatmeal and seem to feel fine.

When a flare would come, I would be house bound and in extreme pain for about 3 weeks. I would stop all solid food and go on an all liquid diet in order to give my digestive system a rest. The shake (with plenty of calories) that I recommend is below. The liquid diet always helped, but my body could never pull out of the flare. I would always have to go back on Prednisone for a 2-month period. It works great, but it’s an awful drug to live with.

My doctor recommended not getting pregnant again until I was really healthy. I was feeling better for several months and we got pregnant with Seth. The delivery set off an awful flare. I had to go on Prednisone immediately. The difference this time is that I also had postpartum hormones that my body was dealing with. Hormones and Prednisone do not mix. For the first time in my life, I experienced extreme anxiety. I didn’t know what to do when Seth cried. I didn’t know how to manage my feelings. I felt like I was not ME. I now have empathy for people who deal with anxiety on a regular basis—not fun.

My husband, Tim, was AMAZING during this time after Seth’s birth. I have never produced milk, and even if I had, I couldn’t nurse while on Prednisone. My husband (and my amazing mom who stayed for the first month) traded off night-time duty and let me sleep in another room so that I could get a full 8 hours of sleep and allow my body to recover. Even after my mom left, Tim continued to do all the night-time duty until Seth was sleeping through the night at 10 weeks old. I know he was exhausted having to go to work after being up once or twice a night, but he never complained. He is the picture of self-sacrifice.

Since my post birth experience with Prednisone, I promised myself I would never go on the drug again. Since then, I have found a new way to treat the flare before it gets out of control. I will spare you the details, but if you are searching for answers yourself, please feel free to email me and I will share. (As I write this in July of 2013, I am only 3 weeks away from making it an entire year without a flare! Exciting stuff.)

What about emotions? I have missed many “mommy moments” because I’ve been stuck in bed. Do you have something that you struggle with and ask God, “Why me?” “What did I do to deserve this?” I’ll admit that I’ve had a few dark moments over the years. But my faith has never wavered. God says in his Word, Now all we can see of God is like a cloudy picture in a mirror. Later we will see him face to face. We don’t know everything, but then we will, just as God completely understands us." 1 Corinthians 13:12. If you are struggling with the issue of tragedy or suffering, this article by Lee Strobel discusses the issue with incredible depth and wisdom. I don't know why He allowed this disease in my life, but I am confident that He is using it for His good. I can recognize the blessings I have experienced over the last several years.

My kids have learned to be extremely flexible. Sometimes we’ve had to cancel things they were looking forward to because I’m too sick to leave the house. I’ve come to appreciate my husband so much more over the years—he always goes the extra mile with help around the house or with the kids when my body needs a break. I knew he was great before, but I often took him for granted. Another thing I have had the privilege of experiencing is the Body of Christ at work. Over the years people have continued to bring my family meals and help take care of our children. My friends have been the hands and feet of Jesus. Had God never allowed this disease, I may have never experienced these blessings. I am thankful to have experienced these blessings while I am still (somewhat) young. God has deepened my faith in Him through it all.

Yes, it’s hard to homeschool my children when I do not feel well. But I want my children to know that life can be hard. I want them to know that we are not meant to handle everything on our own. I want them to see and experience Who I cling to in my time of need. In my weakness, He is strong.

Absorb Plus (the high calorie shake I drink when in a flare)
Listen to Your Gut (the most helpful book I purchased--of many--to help me understand and treat my disease naturally)
Breaking the Vicious Cycle (I started on this diet when I first left the hospital)


Kristen said...

Ah...thanks for the shout out...I'm so glad that my crazy need for information brought you comfort at a difficult time. I'm am so amazed at the strength God has given you to face your disease head on and still be the great mom and wife you are! Thanks for sharing your journey.

Unknown said...

I always tell myself when I am going through rough time that there are people who are going through worse.. You are one of those. So courageous and brave. God is always faithful and He will carry us through whatever we are facing. Thanks for sharing