When Thebes was very sick this past winter I found reading personal experiences of Crohn’s Disease immensely helpful. This post is to chronicle our experience. Maybe it will help someone in the future. Each person has to figure out the path of healing that works for them. I’m not saying this path is the right one but it’s what is working for us.
Looking back we figure Thebes started getting sick in 2005. He started getting mysterious headaches, red splotches on his face and hands and his gums started to bleed. We originally thought it was a reaction to high fructose corn syrup. After drinking normal soda Thebes would get sick with one of the above symptoms.
Cutting out HFCS helped for awhile. But then other corn products started to make him sick-maltodextrin, normal corn, artificial ingredients. For a time we suspected he had Lupus-the gums bleeding and red splotches are symptoms. He even got the telltale butterfly rash a few times.
But Lupus didn’t feel right. So we stuck with the corn allergy theory. Over time he became more intolerant of corn. After seeing a Harry Potter movie Thebes started getting a migraine and his throat starting swelling closed. I panicked and said to go to the ER. Thebes shrugged it off and said he just wanted to drive home.
He hates going to doctors. In hindsight putting off seeing a professional probably wasn’t a good idea. But he’d much prefer to treat himself. His decline in health was steady but slow at the same time. Looking at side by side pics show his weight loss.
Thebes had given up smoking and had gotten a bit chubby. In two years he lost 100 pounds. The first 50 pounds wasn’t alarming; everybody thought he looked great including me. It was that second 50 that was disturbing. His face got dramatically thinner and when he turned sideways naked I could see his ribs and hip bones. His arms and legs started getting too thin.
In 2010 his strength started weaning dramatically. His body had shed the fat and he was now losing muscle. I remember one day he walked outside with the ax to go split wood and fell into the door frame. I took over the firewood splitting after that. He started having trouble lifting full water jugs.
When he would get sick his mind would get foggy. He’d forget things. And then there was the body flopping. When he’d have a flare sometimes his body would spasm like a fish flopping out of water. I didn’t know what was happening but it was scary. He got hot and cold flashes and would sweat profusely. Then after 10 or 20 minutes it would pass and his body would calm. He would be exhausted and hungover for a couple days afterward.
Last year we started suspecting Crohn’s Disease. With Crohn’s a person’s intestine develops holes. Food and nutrients aren’t digested properly and leak out into the body causing intense pain and in a sense “starving” the body. How does western medicine treat it? By giving the patient Prednisone (a steroid) and cutting out the part of the intestine that has a hole. Trouble is more holes appear and the person needs surgery yet again. Steroids for life and multiple surgeries didn’t sound like answers to us. Thebes started cutting out any food that made him sick. He was down to a handful of foods he could eat-meat and veggies mostly.
Last December Thebes got really sick. He crawled into bed and his body flopped around on and off for over an hour. He was sweating profusely and was mentally out of it. I tried to get him to go to the ER but he said he wanted to die at home. I respected his wishes and let him stay in bed. In a weak voice that barely sounded like him he said he loved me and asked me to hold his hand. Something felt different that night and I worried he was going to die. I laid with him on the bed and held him as he shook. I promised myself that if he lived through the night I would force him to a doctor somehow.
He did live. He was terribly weak for days afterward but he made it through. Shortly afterward I was randomly looking up an artist on MTV to watch some videos. There was a show advertized called I’m Allergic To Everything. I thought that sounded like Thebes so clicked to watch it. In the video a young woman Raelyn goes into anaphylactic shock. I started crying-that was exactly what Thebes looked like. I had no idea that was what he was going through.
I decided to call a local naturapath. A few months before Abbey and I had bumped into a friend at the grocery store. I was struck by how skinny she looked and remarked she looked like Thebes. She told us she had Celiac Disease. In addition to Crohn’s we had suspected Celiac. I asked her how she was treating it and she told us about her naturapath in Taos. That’s the guy I called.
Thebes was still recovering from that really bad flare so I went to the appointment with him. Dr. WooWoo (we nickname most everyone) listened to his symptoms and after examining him said he thought he had Crohn’s Disease. He also said if something dramatic didn’t change in the next six months Thebes could die of malnutrition. He said his body wasn’t getting the nutrition it needed from his diet so it was literally taking it from the muscles to stay alive. That was sobering. Ever the skeptic, Thebes asked what kind of experience he had with Crohn’s. Dr. WooWoo said he had Crohn’s himself and had treated himself naturally. I almost burst out in tears at the office. What an incredible stroke of luck!
He then explained his views on Crohn’s and his treatment method. To him all autoimmune diseases are related-Crohn’s, Celiac, Lupus, Endometriosis, etc. They all trace back to a gut system that is out of whack. The gut is considered the “second brain” by natural healers. When bad bacteria becomes overrun in the gut it sends out incorrect information to the immune system. The immune system then “attacks” parts of the body in a misguided attempt to heal the person. Often it is attacking other bacteria in the body. The key is to kill off the bad gut bacteria and replace it with beneficial gut flora. It’s more complex obviously but this is the best way I can explain it.
How to do this? Dr. WooWoo puts people on the GAPS Diet. This is one of the most restrictive diets I’ve ever seen. This book became our guide:
Basically the diet cuts out all grains, sugars, processed food and fruits. People with Crohn’s can’t eat fresh veggies at first because the fiber is too hard for them to process. Fruits are off limits for awhile because they are too sugary. The introduction part of the diet is broth. Thebes had to make broths from meat and vegetables. He’d cook it for days and then strain the bones out. The marrow is important to this diet. He was so sick that his body couldn’t handle whole foods. Probiotics put good bacteria back into the gut. Dr. WooWoo also put him on several other natural herbs and vitamins.
He ate nothing but broth for over a month. Broth for breakfast, lunch, dinner and all snacks. It sucked. His body started having yeast die off symptoms (Candida overgrowth is part of the bad bacteria problem) and he felt like shit for weeks. But the body flopping was gone. The intestinal cramping that often doubled him over in pain started fading. His gums stopped bleeding. He was slowly getting better.
Slowly he introduced solid food back into his diet. His food list was still small and restricted but eating whole foods again was such a treat. He also went in for extensive allergy testing and turned out to be allergic to beef, avocados and some other food. He’s to the point now where he can eat small amounts of fruit again. He says a slice of orange tastes like candy now.
Sieben loves the GAPS diet. After you cook a whole chicken for three days to make broth the meat tastes disgusting but is delicious to a dog. I pull the meat off the bones and mix it in with Z’s dry food.
It’s been almost a year since Thebes was so ill. He’s doing remarkably better. When Thebes initially got diagnosed some family and friends suggested getting the surgery and heavy medication. We talked about that route but it didn’t feel like the right path for us. The GAPS Diet is based on the idea that the immune system is trying to help the patient. With an autoimmune disease the immune system is out of whack and is harming the body but the underlying intent is that it’s trying to help. Alternative medicines and diet try to “reprogram” the immune system so that it can do it’s job and not hurt the body.
One of the tenets of this diet is the Hippocrates quote-”Let food be thy medicine and medicine be thy food.” I know it sounds crazy that a diet can treat Crohn’s and other diseases. But it’s working for us; Thebes’ is so much better. This method is not a quick fix. It’s a whole lifestyle change. We spend a lot of time cooking and our grocery bill is one of our biggest expenses.
It’s been a long road but Thebes is doing remarkably better. He’s put some weight back on and added more food to his diet. His strength has returned though he still has to do work in stages with frequent breaks. The body flopping is gone. Sometimes he’ll overdo it with too much dried fruit or too much of one kind of new food. But when he gets sick it’s much better-the intestinal cramps aren’t as bad, though he’ll sometimes get headaches and bleeding gums.
Thebes is going into town again and going to events. This past winter he was so sick he didn’t leave home much at all. Now he’s excited about photography again and wants to travel-sure signs he’s feeling better.
He still has to be careful with his diet but I’m impressed and grateful at how quickly he’s healing. It’s not even been a year and he’s so much better already. In January he didn’t feel well enough to drive into town to go to the grocery store with me. This month he went down to Occupy Santa Fe to camp with other protesters. That’s amazing progress to me.
Will he always have Crohn’s? Most likely. But can he live with it and treat it naturally? So far it seems he can. My Sadness Jumped art piece really captures my feelings about this whole experience. I was distraught and depressed but out of that negativity gratitude and hope have emerged.
