I have had considerable success with reducing my symptoms and medications over the past 9 years and I'd like to share my story in case it might help inspire others who are interested in taking their health in their own hands.
I realize this message might be controversial to some, and I'm not trying to persuade anyone to go off their meds cold turkey or anything radical like that. In fact, if it weren't for modern medicine i wouldn't still be here today. It has saved my life more than once. I'm writing this to encourage gradual changes toward a more healthy lifestyle. There are three things I would like to make clear before I tell my story:
1. It took me about 9 years to slowly get to the point of being virtually medication free because I believe it takes time for your body to rebuild itself when you go from the standard american diet to a healthy diet like I did. Also, I did a lot of experimentation along the way. When I was diagnosed, I was in my mid 20s so my immune system was more active than, say, a fifty year old. Therefore my crohn's was more severe. Now, 9 years past diagnosis, I'm older and my immune system is probably not quite as active. That can make it easier to reduce meds. Also, some studies show that Crohn's can tend to "burn itself out" over time with patients requiring less medication and overall fewer surguries at 15 years post diagnosis. Everyone's different but that's the general trend, according to these research studies. I am saying "virtually" med free because if I get the flu or something I might get a little flare up of erytheme nodosum on my legs and take xifaxan for about a week to get rid of it. Other than that I've been off meds for about 6 months.
2. I continued to pray diligently to God to tell me how to heal myself. I just kept coming back to Him even when it seemed hopeless. I believe He answered and continues to answer my prayers in His own timing.
3. I feel like the diagnosis "Crohn's" may be a blanket term that can mean a lot of different things. In other words, the cause for one person's crohn's might be different than the cause for the next person's. Scientists/researchers don't know the cause of Crohn's yet so how could they know everyone's is caused by the same thing? Therefore, what worked for me might not work for someone else. I've heard people who got cured by using a raw food diet. That didn't work for me. Others used Chinese medicine. Didn't work for me either. I guess my message is that you have to find what works for your situation.
On to my story. I was diagnosed in 2004 with ulcerative colitis after taking two types of antibiotics as well as anacin simultaneously to treat strep throat, which started my digestive issues. I'm not going into detail about the symptoms but there was bleeding involved. Right away I went on the Specific Carbohydrate Diet (SCD diet) and one month of prednisone followed by colazal for maintenance, and things improved. I weaned down to 4 Colazal per day and was symptom free for 6 months. Then I got too busy with work and college and I went off the SCD diet (big mistake!) I started getting symptoms within a few weeks and ended up in the hospital with Clostridium Difficile. I struggled with colitis symptoms for a few months and at that time prednisone combined with the SCD diet wasn't working fast enough. My doctors decided I had to have my colon removed because it was full of polyps and was too damaged. So I had a colectomy (my whole colon was removed) and jpouch surgery. After that they said they were wrong about diagnosing me with ulcerative colitis, and I actually have Crohn's. I was pretty much stuck at home and couldn't leave for two years because I was too sick. At one point I was down to 5 foot 7 and 79 pounds. I'm going to fast forward and summarize the rest or else this is going to get too long...These are the medications I've taken over the years: Cipro 1 1/2 years, prednisone 1 year, Remicade 2 years, azacol, colazol, Xifaxan. I tried Chinese medicine for a while, which for me consisted of taking several pills per day that were supposed to stop bleeding. They stopped the bleeding but diarrhea continued and I got way too skinny. That's not to say Chinese medicine hasn't worked for someone else; maybe it has. Here's what ultimately helped me:
A low fructose, version of the Specific Carbohydrate Diet - I had to stop fruits all together for a while because any fruit caused gas and problems. But now I eat low fructose/glucose ratio fruits like strawberries, bananas, berries, etc (see the FODMAPS diet). Apparently after having my colon out I couldn't tolerate much fructose. Apples, pears, and Watermelon are the worst for fructose/glucose ratio and when I eat these they don't really digest at all. Honey is out of the question for me. This diet took a long time to work with gradual improvements along the way.
The ALCAT food allergy test- I had terrible arthritis for a while and I could hardly walk. It was triggered by an allergic reaction to Remicade. Stopping Remicade and going on the ALCAT food allergy tests was a Godsend and I wouldn't have made it through my last year of college without it. Cynthia Perkins at www.holistichelp.net has a good discount for the ALCAT. I did the one that costs 350 dollars. Expensive but it was worth it for the arthritis. I have seen my finger joints swell and turn red before my eyes after eating a food I was allergic to. Now I can eat pretty much everything I used to be highly allergic to as long as I keep it down to couple times a week.
An elimination diet - My health shot up even more after I did this. I found out which foods had too much fiber for my jpouch to handle, which had too much sugar and therefore cause yeasty/candida issues, and which generally didn't digest well (for example, beans), and I identified some food allergies.
Supplements I take: 2 capsules VSL#3/day, ultimate flora critical care 50 billion (the version without FOS), vitamin d3 in the winter only, barlean's fish oil, zinc picolinate, milk thistle, MSM, and about 3 mg of melatonin every other night to help me sleep.
Things that I think have been helpful: moderate cardio exercise a few times per week (working up a sweat), vegetable juicing a couple times per week (cucumber, Celery , carrots, parsley, even broccoli if you can tolerate it, etc.), a generally low carb paleo diet limited to a couple servings of fruit a day on average, a somewhat low fiber diet if you have a jpouch. I also noticed if I fast for a day, the next day my digestion improves. So I work in a 24 or 36 hour water or tea fast once in a while. I try to do it weekly (look up "intermittent fasting").
So this is basically what I eat in case anyone is wondering: meat, fruit, sometimes nuts or nut butter, some cheese here and there. Typical breakfast is scrambled eggs and a strawberry-banana smoothie with avocado or a little almond butter. Lunch or supper is chicken, shrimp, sardines, sometimes steak or pork chops but I keep red meat to a minimum because of the recent research on its affects on our gut bacteria. Sometimes I'll dip a banana in sunflower seeds and eat that. There are tons of good things you can eat on the SCD/paleo diet. On weekends I sometimes make veggie juice and drink that. I was using NOW brand dextrose for a while to replace honey, and that didn't bother my intestines at all but it was causing yeasty problems so I got rid of it and they went away.
By the way, before I got diagnosed I ate fast food every day and rarely had a fresh fruit or vegetable. I also drank too much and probably didn't get enough sleep (typical college kid lifestyle). In my opinion, that's why I got sick and developed crohn's/colitis in the first place.
Disclaimer: taking your health into your own hands can be risky so if you make changes I'd say try to make them gradual - I ended up in the hospital after a couple of the more extreme experiments I did. Each time I was under the care of a professional: a raw food diet guru, and a reutable traditional chinese medicine doctor in my city, a naturopath. Again I'm not knocking those things they might have worked for someone else. Also drinking a couple tbsp colloidal silver a day had bad results because it was too hard on my fistulas.
Any questions or comments please let me know. Thanks for reading my story.
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