Wednesday, February 3, 2016

Crohn's Surgery and How Paleo Has Helped (Or Not)

It's been an incredibly long amount of time since my last blog post. Excuses or not, I just have not been keeping up with this blog like I used to or should be. My hobby has been drowned out by the noise of life.

So here is an update on Paleo and the role it plays in my life.

Four months ago I had surgery. A major surgery. A major, Crohn's induced surgery. It was scary. One of the most frightening times I've ever experienced in my life, unsure of how I would be when I woke up or if the surgery would truly make a difference. I never expected to have to go through this. I changed my diet, I changed my life, I had done everything in my power to be a healthy person and I had simply failed.

Rather, my body has failed me. Sure, in the past year or two I haven't been as strict on my Paleo diet. I took the 80/20 approach that so many other people endorse and boast as working so well in their lives. I had alcohol, I had sweets occasionally, and I even started ordering off of menus at restaurant without picking apart all of the ingredients and requesting ten modifications for each dish. I was simply living like a relatively normal person would. But herein lies the problem. I'm not a normal person, for I do not have a normal body. For whatever reason I was given this body of mine, in which my immune system sends the wrong signals and there ensues chaos causing inflammation, pain, and a host of other problems in my intestinal tract just for eating a food it does not like. This food does not even need to be "junk" food, it can be any non-GMO, organic, heirloom, whatever. My struggle is to keep track of what foods it does and does not accept (as this is ever changing) and then avoid those foods. Seems simple enough, but clearly my efforts to do so have so far fallen through.

Avoiding foods seems like not a big deal. After all, there are thousands of people in this country that are allergic to dairy or shellfish or peanuts. But with Crohn's it is not predictable and therefore frustrating to keep up with. I always have the option of going back to SCD (the Specific Carbohydrate Diet) but then I think about my life when I was following it to the T and I can't imagine giving up freedom again. I was a slave to my kitchen- hand preparing literally every morsel of food that touched my tongue. I had an extremely limited social life because I could not trust eateries outside of my own home and let's face it, the heart of socializing is sharing meals. I was a health obsessed and judgmental bitch toward other people. I was helping myself heal, but I was also expecting that everyone else was fortunate enough to have the same circumstances and capacity as what I had at the time. Which brings up another angle, I don't have the time or circumstance to stay at home all day and cook anymore. I have to work secularly now and support myself. Without a very solid support system I cannot imagine even attempting SCD again. In Breaking the Vicious Cycle Elaine Gottschall says her daughter stayed strictly SCD for 7 years before reintroducing small amounts of "illegal" foods. No offense to Ms. Gottschall or her family but I picture her daughter as being a miserable hermit who is friendless with no one but her mother by her side even as a grown woman. She didn't eat outside of her house for 7 years? I find that hard to believe. Either that or she found a commune of other people with autoimmune diseases who agreed with the diet and they started their own village, sharing bone broth and homemade yoghurt. If so, let me know where that is located it sounds like a good idea. The reason I transitioned from SCD to Paleo is because Paleo was more reasonable of a diet. It is based on logic and moderation, it made sense in my mind, but to my body it did not.

So now I bear the scars of an intestinal resectioning. The surgeon took out a portion of my small intestine as well as large intestine. In fact, the part that was removed was where the two meet. Which means my appendix went as well. I've never experienced so much pain in my 25 years of life. I was in the hospital for a total of four days and took pain medication for the following month and a half. The first two weeks it was almost impossible for me to walk because of the pain and I nearly fainted in the shower on several occasions. I have four scars from the laparoscopic surgery. One is rather large, two are small, and one is medium sized. Applying Vitamin E oil daily is helping with the healing of them. It's four months post-surgery and I'm still not out of my flare. It's not terrible like before the surgery (I was to the point where I could not physically eat food anymore) but I still am not feeling healthy. I'm now taking a new kind of biologic called Entyvio. It's specifically for people with severe Crohn's and UC. It's extremely expensive and I have to go to the hospital to get an infusion which takes around an hour every couple of weeks. I can't say that it is working or really doing much of anything but I am trying to remain positive.

I don't want to sound discouraging to anyone who has been recently diagnosed with Crohn's Disease or who is starting their journey on SCD or the Paleo Diet. I am simply telling my story and you can take from it what you like. It's not all negative. I believe that my avoidance of grains and soy and many sugars has helped with the slow progression of my disease. After all, it took almost 5 years from diagnosis to surgery, I believe that time frame would have been much narrower had I continued the standard American diet. But my faith in the power of foods has been shaken. I had a blind ideal fueled by online testimonies and persuasively written articles about the healing affects foods and supplements had on humans. I only partially believe this now, as I have both experienced it briefly, then watched it fail. The foods and nutrients we have available to us now just are not what we used to have. This limits their abilities to heal. Poisons are everywhere from the air we breathe, to the water we drink, to the soap we use, and roads we drive. Food is just a small part of the equation and there is only so much that is plausible to do in this day and age.

I will continue to be pro-Paleo and anti-GMO but this time with a wider perspective. Chronic diseases are just not "cureable" like some will lead you to believe. There are exceptions, I'm sure. But the general rule is that autoimmune diseases don't disappear when you start eating grass-fed beef.

The moral of this story, if you need a takeaway for my non-Crohn's audience, I guess would be to be cautious of what you hear on the Internet or other readings. Not all of the bloggers who once had a sickness get rid of their ailments by following Paleo or any other regimen and they are examples at the top of their game! Do what is best for you and your own body, don't buy into something else just because it worked for someone else. Keep your head straight, don't fall for snake oil schemes, and be happy no matter what situation life throws you into.


  1. Thank you so much for sharing this. I know that while Paleo/SCD have helped many out there, there are some people who will never be able to overcome the chronic of their chronic disease, no matter how strict they are with the foods they eat. Like you, I'm one of those people. I don't have answers (actually considering a final reversal of my j-pouch to an ostomy), but please know that your words made me feel less alone. Thanks for being brave enough to share.

    1. In the same way, thank you for taking the time to leave a comment so that I, too, feel less alone. We are dealt this hand in life but obviously we are strong enough to live with it! Best wishes :)

  2. Thank you for your candidness, and honesty. I've been in SCD 100% to my best ability for over 8 months. I am one of the rare ones that doesn't mind the cooking, or sacrifices of eating out. I'm perfectly happy to continue on but it sure would be nice to see positive results. With diet, prednisone and Imuran, I'm still not out of my first flare! I was diagnosed just 9 months ago with UC, and I fear I'm one of those that the diet isn't working for. I have committed myself to a year of SCD to give my body a chance to heal. I don't intend to give up the healthy changes I've made even if SCD doesn't work for me, but I will most likely ease up on some of the restrictions that seem unfounded (in today's modern world). Wishing you the best as you continue to heal. Love your website and your recipes...especially the peanut butter bars!

  3. Thank you for sharing your story. I am so sorry for the pain you have experienced due to your health. Health issues are so isolating and so misunderstood. People don't know what to do with long-term health issues like UC, unpredictable food allergies, SIBO, etc. and, like you said, everything revolves around food! :(

    I also really appreciate your thoughts on food not being the cure-all. I think that is a wise and balanced perspective.

    Thanks for sharing. My husband and I have been working through SIBO, candida, celiac, and food allergy issues for the past few years. It's hard to persevere, so I'm thankful for helpful blogs like yours!

  4. I too want to thank you for sharing with us. I hope you are feeling better. You know there are times when I too knuckle up and stay strict with my healthy meal decisions. When that happens, I too feel like the described "miserable hermit" lol.

  5. I periodically check back in on your site. I hope you are going to keep it up. Great info and recipes!