02 March 2014

the one where laura rambles about how difficult it is to make choices

So, I need some help, here. A sort of, "what would you do," as it were. 

On Tuesday I'm going in to meet with my GI. He's going to tell me that in one month, when I'm done with my prednisone, he wants me to start Remicade infusions. Sounds simple. 

Remicade will likely be very successful. It usually is. However, it comes with many risks, like cancer, rheumatoid arthritis, other autoimmune conditions, general side effects of starting a new drug, and on and on and on. Remicade is usually successful for a few years and then loses effectiveness, and that's when you switch to a new biologic (read: immunosuppressant). There are about 5-6 biologics on the market right now that might help, making my span of drugs about 12-15 years or so? That's a long time to be on drugs that are essentially toxic. 

Left untreated, my colitis poses the increased risk of colorectal cancer in the future, as well as debilitating daily symptoms when I'm dealing with a flare-up. We don't know when, and we don't know if. But the risk does increase. Additionally, it continues to progress, leaving daily life difficult some days.

So I have a month to come up with other alternatives. And there are MANY. I belong to several message boards and forums, and on those sites, participants generally list their therapies in their board signatures. They can range from diet to pharmaceuticals to meditation to acupuncture to chiropractics to herbals to nicotine to almost anything you can think of. The bottom line is that there is no cure, only symptom management. Keeping the disease in remission is key, but it never goes away. Different things work for different people, and at different times. You really just don't know what's going to respond, and when. 

So my dear friend Em emailed me yesterday and did what friends generally do and was like, "what is this immunosuppressant talk?! There must be another way!" and we talked about a few other more natural options. The problem is this: I don't have the time to try everything, but I'm afraid of missing something that may work without causing more harm to my body. 

So, simple, right? Em told me to look at the Autoimmune Protocol Diet, which is essentially a super ramped-up Paleo diet. It looks strict, but it also seems like something I could do. But do I have that kind of time? Mama needs to get into remission! My heart tells me that it might be worth it to suffer in the short term in order to have better health in the long term, but the desperation of a flare is enough to make anyone sign up for anything. And when you start the biologics, there isn't really a point where you change your mind. They're big. 

And THEN. I'm sitting in Mass today and the Gospel is "that one." "Oh ye of little faith, why do you let your heart be troubled? One cannot serve two masters." Aw, crap. Is the quest for health becoming my master? Is there a point where I just need to let go and trust that my health is safely in the hands of The Lord? Isn't it possible that my suffering is just something on my spiritual path that will bring me closer to Heaven? Catholics and their redemptive suffering, man. It's catching. I want to live another 50 years because selfishly, I want to be in this beautiful world as long as possible. But if my obsession with staying in the world trumps my desire to make myself worthy of eternal Heaven, something is clearly off. If I was truly healthy, couldn't I just say, "Lord, I trust in You. Make my health a spiritual health and use my physical suffering for Your good?"

So there is that choice out there. Do I continue the quest for natural health while knowing that sometimes that natural solution never presents itself? Do I have that time? Do I take the drugs and take the chance on serious risks later? Do I just pray a WHOLE lot harder? What do I do now? 


Scottish Twins said...

You don't really know me. I've been following your blog since our oldest kids were young and we were both on the bump and we both seem to keep having kids at the same time (although you had twins this last time and I didn't ;). I was originally diagnosed with UC and then it was changed to Crohn's a year or so later. My Crohn's is in my large intestine.

Anyways, I was on and off prednisone for years and finally decided to look into alternative healing. I got myself well and into remission using the prednisone and then once done focused on diet. I've tried many diets over the last five years and have found that no grains or sugar is best for me.

Last October I started the GAPS diet, which is similar to SCD and Paleo. For five months I haven't had any grains or sugar, but I also haven't had to take ANY meds. Praise the Lord. No signs of flaring and I'm feeling wonderfully.

I'm also on a therapeutic probiotic dose to heal my gut.

The diet is really intense and you have to follow it fanatically in order to remain in remission. There is no slipping up. I basically eat meat, eggs, homemade yogurt, veggies, fruit, cheese, and nuts/nut flours. That's it. But I'm full and healthy.

This process has also been very spiritually fulfilling. I have to rely on God for the will-power to resist the temptation of other foods and with His help, I get stronger every day.

Anyways, I would love to share my experience with you if you're interested. I would definitely consider the GAPS/Paleo diet!

scottishtwins at hotmail dot com


Brittany Yowell said...

I love you. I've got nothing, but I love you. I'll pray extra hard that God reveals exactly what He wants for you.

Laura Cooke said...

Jessica! I absolutely know who you are! :-) I am going to research GAPS, too...so much info...

Aww Brittany, you're a peach. Love and prayers is just as good as the best medical advice out there! <3

Paula Hoppel said...

I hope one of the diets works for you, Laura. They seem successful with many as long as you find the right one. We tried lots of options with Chris before he started Remicade for his Psoriatic Arthritis (which was very debilitating). He has been on it for about 9 years now...you are free to call if you want to talk to someone who has been on it. Keeping you in my prayers!

Anonymous said...

Laura, I'm sorry all this is happening!! I'll be praying for you as well. In terms of advice, the best thing I can think to tell you is to tune in and listen to and for your inner voice.

You know, when you're not listening to the six people and a dog you cohabitate with and all the other voices in your head. :o

Love, LB (college LB)