Sunday, October 2, 2016

Crohn's Update

I know I promised a Crohn's update a while ago but time seems to have gotten away from me again. I feel like this update is fairly boring and has lots of science stuff. So, if science is not your thing, run away now. Go watch some cat videos on youtube or something. Otherwise, here we go:

Things have been going really well with my treatments. I have been reading a book about treating Crohn's naturally. I believe diseases can be treated with BOTH natural remedies and science. Trust me, I am not about to stop my medications at this point. But, I thought it would be worth looking into some natural options I could add to the medications I already take.

A lot of what the book talks about is treating Crohn's symptoms through diet. It suggested to keep a food diary for 3 weeks and look for any patterns regarding symptoms and foods. It also suggested having blood work and allergy tests run to check for food intolerances. Apparently food intolerances are VERY common in people who are diagnosed with Crohn's disease, especially the main allergens like wheat, lactose, nuts, tomatoes, and eggs.

Well, after 3 weeks I noticed absolutely no patterns regarding symptoms and food. At my next checkup with my GI I brought up the book I had been reading and my concerns regarding food intolerances. She suggested I meet with an immunopathogeneticist. Yeah- apparently that's a real thing. He did a prick test, ran some blood work and also did a patch test. The prick test and patch test both showed no allergies or intolerances to the foods he tested (about 25 of the most common allergens). This was great news for me (YAY BREAD and ICE CREAM!) but didn't really get us any further on our quest to finding out how to decrease my symptoms. The blood work was to test my immune system and the results were very good. Because I take Remicade (my infusions), it is really important that we make sure my immune system is functioning correctly. We want the Remicade to suppress the overactive part of my immune system but not totally kill it. The blood work showed that my immune system is right where we want it to be! They gave me a flu shot and a pneumonia shot and sent me on my way. In 4 weeks I will have more blood work done to make sure that the Remicade doesn't interfere with the effectiveness of the two vaccines.

On a daily basis I generally feel very well. It is such a miracle to look at how far I have come in just a few short months.  I know that the Lord has had his hand in my life and my healing process. I am so grateful for all of the prayers and fasting on my behalf and I know I wouldn't be feeling this well without all of the support from the people I love. I take two pills a day (Imuran), one million vitamins, supplements, and probiotics (to make up for nutritional deficiencies in my diet), and I have my infusions every 6 weeks. I avoid eating nuts, chocolate, raw fruits and vegetables, whole grains, greasy foods, soda, caffeine, and red meat. Not bad at all. Some days I feel more fatigued than others, and I cannot do as much or go as long as I used to. I get quite a bit of stiffness in my joints, and especially on my legs. But, that's ok! I've slowed WAY down and I love it. It's good for me to remind my type-A self to take a break, sit down, say no, chill out, and listen to my body. At the same time, I try to push myself to regain back strength and stamina and I feel I have come a long way. I carry my 19 pound baby everywhere, unload Costco groceries up a flight of stairs, run errands, take walks, and occasionally bust a move on the Wii Just Dance. So many things that probably seem so simple, but I couldn't have imagined doing a few months ago.

A lot of people ask me about side effects from the treatments I am on (since they will both continue for the foreseeable future). For the most part I feel very well on them. Remicade has a few downsides. Because it is used to suppress the immune system, it has severely decreased (basically eliminated) my NK cells. These are special cells in your body that fight cancerous cells. It is rare, but a particular cancer called hepatosplenic t-cell lymphoma has occurred in people taking both Remicade and Imuran. BUT- we won't worry about that. It's just something to be aware of and my doctors do a TON of tests to keep checking that I am healthy.

The second medication I take, Imuran, can also cause lymphoma, skin cancer, and some blood disorders. Imuran is usually used in kidney transplant patients to help their bodies to accept the new kidney. It is also used in patients with severe Crohn's that do not respond to normal treatments. The Imuran is causing my hair to fall out, which, let's be honest, is less than ideal. I have some pretty cool bald patches on the sides of my head but I've taken a few notes from the Donald and I'm getting really good at combing it so you can't tell. Lets just hope it doesn't ALL fall out. We vacuum, sweep, and clean out our drains far more often than normal people. I think I am just going to start collecting it all and start a wig business on the side.

Even though I feel better for the most part, I try to constantly remind myself not to forget all of the important lessons I learned while I was sick. A few of them include:

1. Faith in God. I think this was the biggest and hardest thing I learned. Sometimes it is so hard to believe that things will always work out. But, they do. Not always the way we want them to or on our time frame, but they do. You just have to believe it.
2. Gratitude & Humility. I feel these two go hand in hand. Our Heavenly Father has blessed us in so many ways. We must be humble and acknowledge His hand in our lives. We also must be humble enough to ask for and accept help from others. Both the giver and receiver are blessed when service is given.
3. Life is Short. Our time here on the earth will go by SO fast. When I felt like I was going to be that sick forever I had to keep telling myself that our time on this earth is limited. Our trials won't last forever, but neither will the small wonderful moments we have. We must learn to enjoy the ride. No matter what it brings. We must not be in such a rush to get through things. Enjoy the moment.
4. Don't Judge Others. I'll be honest, for me, this is one of the hardest lessons to remember. You never know what other people are going through. Everyone has difficult things in their lives, so be nice!
5. Service. So many people served me in so many ways. Even if you think you have nothing to offer, I promise you, you do.
6. Patience with Others, and Patience with Myself. No one is perfect. We are meant to be. Enjoy where you are at in life and give yourself credit for what you have accomplished. You are probably doing a lot better than you think you are.
7. Look Forward, Not Backward. There are so many times that I think back on the few months I was sick and I get so sad and mad. I'm sad for the time I missed with my kids, the burden I became to other people, and the pain I felt. I'm mad because I had to go through it, the timing was terrible, and feel like I missed out on so much newborn bonding time with Charlotte. I have to remember to look forward with gladness. We go in the direction we are looking.

I am always so quick to forget the lessons I have learned, and I feel like if I write them down then maybe I actually stand a chance at remembering and applying them. I have some pretty great people in my life and I am so blessed with support and kind words from those around me. A huge thank you to the people who babysit my kids multiple times a month for appointments and treatments. It means so much to me to know they are in good hands. I am grateful for the notes, texts, and packages that continually remind me of the kindness of others. I feel like not amount of service I give could ever repay all of the kindness I have received. Its going to be an interesting ride, but I am so so grateful I get to share it with all of you.

There is a great quote by President Hinckley that I think of often:
"[The fact is] most putts don't drop. Most beef is tough. Most children grow up to be just people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise... Life is like an old-time rail journey-- delays, sidetracks, smoke, dust, cinders and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride."




No comments:

Post a Comment