Sometimes people ask me what I’ve done to get to my current level of health despite having a potentially fatal disease called Crohn’s disease. It all started with changing my diet and lifestyle. I’m including the below timeline so people can see what I’ve done and hopefully pick up a thing or two to incorporate into their healing regimen.
If there are any questions, just ask me and I’ll try to update this page. It will be a living document and I hope to update it as new information develops.
Nov. 1996 – Symptoms of diarrhea and gut pain began. Weight 152+ lbs
Thought I might have IBS or dairy intolerance. Tried lactaid milk and lactaid pills with no improvement.
Tried the antibiotic Flagyl with temporary improvement, but symptoms returned.
Feb. 1997 – Diagnosed with Crohn’s disease. Weight 142 lbs. Lost 10 lbs.
My problems with Crohn’s were gut pain, diarrhea and an inability to digest fat. No arthritis, no skin rashes, iritis, fistulas or anything else.
For years I just tried to survive on Pentasa despite having daily loose stools and gut pain.
Nov. 2004 – Had a CT scan that showed strictures forming in my terminal ileum area, where my Crohn’s is.
Early Dec. 2004 – Took an antibiotic (Flagyl), worst gut pain ever felt, most explosive D yet recorded on the Richter scale… (haha ?)
Late Dec. 2004 – Started SCD with homemade Yogurt at least 1 cup a day, maybe up to 3.
24 hrs later had first solid stools since symptoms of Crohn’s began in Nov. 1996.
Was hooked on SCD, returned to where I was living and working, threw out all of my processed food, went 100% SCD. Did NOT eat ANY almond or pecan bread for at least 1 year, but I did eat banana almond muffins.
POINT – I ate almond flour moderately. I can remember trying to eat SCD peanut butter brownies and noticed my stools got much looser and so I cut peanut butter from my diet and haven’t eaten it since. Always experiment with which foods and at what quantities can be tolerated. All nut flours are particularly difficult for damaged intestines to digest.
Took only SCD legal vitamins from Freeda, no other supplements. Only food (including yogurt regularly) and vitamins.
For the majority of time, my stools were solid, unless I ate something off my diet by mistake.
2005 – Asked my GI doc if I could go stop taking Pentasa since I was feeling so great on SCD. He said no. I continued to take it.
Weight ? Guessing 135 lbs.
Jan. 2006 – Had a second CT scan that showed strictures increased slightly in my ileum area.
POINT – It is very important to understand that when inflammation dies down in Crohn’s disease, with conventional drugs or alternative medicine, one is likely to see strictures form. Please start taking Glutamine to make sure the strictures are replaced with healthy cells and become more flexible with the intestinal peristaltic movement. I didn’t know this until later, see below.
I introduced the almond bread. I loved it. I noticed if I ate too much my stools would get wetter. I went so overboard eating too much almond bread and muffins that I nearly poisoned myself. I became extremely tired to the point where I didn’t want to walk. I grew up playing hockey and the fact that I didn’t want to walk scared me. My legs felt like lead weights, my breathing was labor intensive. I cut back and my tiredness went away in a few days.
As a substitute for almond flour I found pecan flour was MUCH easier for me to digest. It seems as though I can eat as much as I want with no problems for my stool, so I cook both almond and pecan breads to balance my diet more.
I began to see the Pentasa medicine in my stool, as if my body was trying to tell me I didn’t need it anymore. Still continued to take it though, but at a much reduced dose of 1 or 2 capsules 3 or 4 times a day. Prescribed dose was 4 capsules 4 times a day.
Weight ? Guessing 135 lbs.
2007 – Introduced Freeda B-Vitamins.
I can remember steaks and hamburgers were problematic for me, I would run to the bathroom within 30 minutes of eating hamburgers. The fat was too much for me to digest. I’ve always had trouble with digesting fat after developing Crohn’s disease. I would see fat globules in the toilet. It was not mucus. I read how Europeans drank after meals to help with digestion. I started drinking whiskey (not out of depression!), but to slow down my digestion. It worked. I could only eat red meat when I drank.
Later in 2007, I started experiencing what are known as bowel obstructions due to the strictures in my ileocecal valve (at the terminal ileum). I stopped eating strawberries and spaghetti squash. These bowel obstructions would wake me up at 2 or 3 AM and keep me awake for hours. Sometimes the pain lasted for 2 or 3 days. A good way to describe it is that the weight of a 500 lb person was concentrated onto the size of a pin head and stabbed into gut.
Significantly increased my intake of water in the afternoon because I realized if I didn’t, I would get gut pain and loose BM’s nearly consistently at 4 – 5pm.
Otherwise, my stools were solid a majority of the time unless I accidentally ate something accidentally I shouldn’t have.
Sept. 2007 – First Colonoscopy since initial diagnosis in 1997. Revealed no inflammation found. Normal mucosa in colon. Strictures in ileocecal valve more pronounced.
In follow up visit with my GI I asked if I could stop taking Pentasa and he instead recommended I try taking Entocort. This is after my colonoscopy said there was no active inflammation and I told him how great I was doing with solid BM’s while on SCD. I decided not to listen to him and tapered off my Pentasa, not because there’s a dependency but because I didn’t know if my symptoms would come back.
They didn’t and I’ve been med free since then.
Weight ? Guessing 135 lbs.
2008 – Had to start eliminating pepper, carrots, lettuce and broccoli because my strictures were getting worse. Stopped eating Yogurt and used probiotic capsules instead due to laziness.
Stopped eating red meat because I was trying to be environmentally conscious.
Changed my eating and drinking schedule. 32oz of water upon waking, eat food 1hr later. Drink another 32oz of water 1hr later. Eat food as I wanted an hour after that, no more liquid beverages.
Family sees how skinny I am and tells me to eat more. I explain that I try, but my gut hurts too much when I eat larger meals.
Weight ? Guessing 130 lbs.
2009 – At this point the bowel obstructions were severely limiting my ability to eat a balanced diet and I was losing weight. Reading online, my only options were to continue starving myself or have surgery to remove my intestines. I don’t know why, but despite the CCFA saying surgery is a perfectly valid option, I completely rejected it.
I decided to see a Naturopath for the first time in my life. I was curious how they approached health care. The person I met was fantastic, I loved working with her and after listening and hearing about my issues she recommended I try Glutamine for my strictures. I took 4g, three times a day in water or applesauce and 6 months later tried eating carrots and strawberries again. Amazingly, I could tolerate them more, but I still had pains if I ate too much. If I stopped taking Glutamine, the pain would return to previous levels. Stool test of my bacteria numbers showed the probiotic I used was useless. I tried a new probiotic which made me feel better.
Switched to all organically grown foods.
Weight ? Guessing 132 – 135 lbs.
2010 – Reintroduced hamburger meat, but only as grass fed and local. Without having to drink whiskey I could eat and digest it well.
Started working on my documentary WANTED: Crohn’s End.
July 2010 – Tried THC Oil and I believe it acted as anti-inflammatory to slow down my digestion and I was able to eat whatever I wanted for five days including, 1lb of fried pork ribs, chicken fajitas, scrambled omelet, marinated steak and mushrooms with a salad.
July and August 2010 – Tried Colloidal Silver and I believe it healed my strictures. The difference is astounding. Now I can eat any kind of food with seeds or roughage, as much as I want and I don’t get gut pain from partial bowel obstructions.
Tried Natren probiotics and my gut felt really good. I started eating raw cow & goat cheddar cheeses for the first time ever. I don’t think I was ever lactose intolerant and I still eat the cheeses at time of writing this with no problems.
Tried various enzymes, not sure if any of them work for me or not.
Tried Cod liver oil, vitamins, vitamin D, hemp seed oil, flax oil, colostrum, aloe vera juice.
Nov. 2010 – Tried eating mashed potatoes, apple pie and pumpkin pie for first time since 2004. Had no pain, or gas, but one BM was slightly softer. Next BM that day was normal.
Doesn’t appear I NEED to drink 32oz of water in afternoon between meals like I did back in 2007, but I still do anyway.
Dec. 11th 2010 – Ate a flour burrito with rice, black beans, grilled chicken, mild salsa and lettuce from Chipotle.
Weight 140+ lbs.
Overall for 2010 my BM’s are solid with occasional softness. I’ve had 4 instances I can remember of either diarrhea or intense gut pain. All went away within 24 hrs after I starve myself to give my gut a break.
I feel like I’ve turned a corner, the bowel obstructions are gone, the BMs are solid and it appears I’m even able to eat a meal once a month off SCD.
Late Dec. 2010 – Experimenting off of SCD has caught up to me and diarrhea returned briefly.
April 2011 – I decide to adopt the Gut and Psychology Syndrome diet by Dr. Natasha Campbell McBride. My hope was that the addition of chicken feet bone broths and kefir would heal my gut further.
It was extremely difficult in the beginning and I almost quit because of the frequent diarrhea. Turns out my body does not agree with duck eggs, which are supposed to be easier to digest, but not for me.
August 2011 – By now GAPS is a part of my daily life. I try an HCL (hydrochloric acid) supplement and notice I gain weight when before it was difficult to.
I also add raw goat milk kefir from real kefir grains and my weight continues to increase.
September 2011 – Weight is stable at 150 lbs. I am now trying Krill Oil. I don’t notice any harm or benefit.
I continue to have infrequent and short lived episodes of diarrhea. At most, once a month for 1 or 2 days. Mostly due to my experimentation and travel, which interferes with adhering to my dietary regimen.
I am still medication free since 2007.
Summary – There are several things I wish people would keep in mind when they try to heal from digestive conditions.
- It will take a long time. After years of abuse these conditions take a long time to develop. It will take years to undo that damage and restore the balance. It’s also done in layers. First you fix the absorption of nutrients, which then will fix the digestion of fats and so on. If you accept this process, you are half-way there to healing yourself. Impatience will only work against what your body needs.
- There are a lot of diet’s out there and all have different ways to heal the body and all of them work. The question is what will work for YOU and YOUR damaged intestines? It’s taken me 6 years, but I now have my own lifestyle diet that incorporates key principles from SCD, GAPS, Paleo diet, Maker’s diet and possibly others I haven’t learned of yet. Take the concepts that make sense and work for you and throw out the rest. Don’t subscribe to one single ideology, which will only limit your potential.
- On SCD, if you can, don’t eat ANY nut product (almonds, pecans or peanuts) for at least one year. People end up hurting themselves more than they realize by eating to much too often.
- There’s something to be said about using an antibiotic to wipe out the gut flora and then following up with high quality probiotics. More research needs to be done with this, but I think that’s why I saw such immediate results when taking the antibiotic which made my symptoms WORSE and then starting a week later the SCD and the 700 billion cfu homemade yogurt.
- Inflammation that goes away leaves behind scar tissue, which forms strictures. Those strictures create narrowed portions of the small intestines (if inflammation was in there). Without a doubt, I believe that Glutamine saved me from eventual surgery and it’s the thing that really opened my eyes the world of alternative medicine rather than conventional drugs and surgery.
- While the Glutamine saved me from surgery, I still didn’t have full freedom to eat large meals, especially when I ate rough foods. It wasn’t until I drank 8oz of Colloidal Silver on two occasions that I could eat what I wanted at much larger quantities without pain.
- You know how they say in business it’s all about location, location, location? Well, to overcome a digestive condition, it’s all about probiotics, probiotics and probiotics! Unfortunately, not all are created equally and there’s an unbelievable amount of misinformation out there about what probiotics are or what makes a good one. I will have to write a blog post about this later.
To be continued…
- 09.24.2011 – Added year 2011
- 12.12.2010 – Updated years 2006 and 2009