My Timeline
I was diagnosed with Ulcerative Colitis late in December of 2004. It was my first colonoscopy, and the doctor told me my large intestine was fully inflamed, all 5 feet, end to end (I thought I was told it was about 11 feet; apologies to those of you I misinformed.) I may have actually come down with it sometime in 2003; I went undiagnosed for quite awhile, and the end result was total inflammation.
I was immediately prescribed prednisone: 40mg for the first week, reducing by 10mg/week. It worked very well, at first. As I got down to 20 mgs, it became dramatically less effective. The doc increased the dosage up to 40mg again, but it didn't seem to do much for me anymore. It ran its course in about a month, and I put on about 20 lbs. in both water and regular weight. I dislike prednisone.
I was also taking Colazal concurrently with prednisone. It is an oral treatment for colitis. In my experience, it is moderately effective. The symptoms don't go away, but are attenuated a bit. I continued with this treatment until I hit remission, but I eventually discovered that my remission was not a result of the Colazal.
I found out about AMP the following March and after reading through the website fairly thoroughly and with a bit of hesitation, ordered the AMP. It demands that you follow a diet and take imodium initially to aid the process. After the first month on the regimen, I lost the 20 lbs from the prednisone. I lost another 10 lbs. the next month. As it's a fairly restrictive diet, it's a pretty good weight-loss program.
I continued with this process for several months, missing a month or two because of a lack of funds. But by next December, I had a second colonoscopy almost exactly a year apart. The doctor told me all but the last several inches of my colon were fully healed. He had not expected results this good. So some combination of the Floracel, Colazal, and diet were working.
By about the following February, I was in fairly good shape. I wasn't 100% regular just yet, but it was getting fairly close, though my diet could still remind me of my condition with a spike in symptoms when it didn't agree with my food choices. It was at this point that I had to find out what was causing my healing. Was the cost of the Floracel worth it? So for the following 6 weeks, I put myself to the test: 2 weeks on AMP and diet alone, 2 weeks on Colazal and diet alone, and 2 weeks on just the diet alone. The AMP was very clearly the winner. And this is when I ascertained my opinion that Colazal is only moderately affective. And the diet is great to remove causes for irritation, but does nothing to treat the underlying condition or symptoms, so the diet did worse than Colazal.
Some point after this, the doc recommended I try Canasa as a supplement to help push me to remission. It's a suppository so its effect could be enhanced due to the localization of the treatment. So in combination with the Floracel, I hit remission a couple months or so later.
Since then, I've stopped taking Colazal and Canasa. I've only been on Floracel since, for some 5+ years, and mostly at the 3/day maintenance dosage. I say mostly because it's been so good for so long, I forget I have UC. So there were periods where I forgot to take it at all, and started slipping into a relapse. And then I'd up the dosage to anywhere from 4-9 pills/day depending on the degree of the relapse or how quickly I needed to hit remission again.
I should mention that during my recovery, I was taking iron supplements to help replace any blood loss. This could be important in preventing anemia. And I was also taking a multivitamin to hopefully help balance out my nutrition since an inflamed colon hinders the absorption of nutrients that pass through it. I recommend both of them, but again I haven't really had these either since hitting remission in '06. Maybe a handful of times between the two of 'em.
The Diet (Click the image to see it full size)
This is the diet they issue when you buy Floracel. For the most part, I followed it very closely for my year-long recovery. I kind of decided group 2 items could be eaten in any quantity and generally did very well with it.
The major staples of my diet during this regimen were as follows:
- turkey and cheddar cheese on white toast with light miracle whip
- peanut butter and jelly (each classified as Group 2, didn't seem to give me any trouble).
- baked chicken (from Meijer/Walmart/etc,) and instant mashed potatoes (I just added water instead of butter and milk, worked great with Betty Crocker). I ate pretty good, and could get 4 meals from one chicken.
- baked chicken in Mac'n'Cheese, again replacing butter/milk with just water. Works great with Kraft.
- egg sandwich, sometimes with a piece of cheese melted in it. Mmmmm... (eggs, bread, miracle whip, cheddar cheese)
- homemade cheese burger (usually with fresh cheddar melted on top)
- gatorade, Juicy Juice (Berry and Orange Tangerine are excellent, a little on the expensive side, but nice to have the variety as opposed to always gatorade. Bulk up when on sale!)
- Bananas, peeled apples (Fuji, Gala, Golden delicious, Honey Crisp are the best snacking apples, I think).
- Homemade spaghetti - your regular ground beef, pasta, and Prego/Ragu tomato spaghetti sauce stuff.*
- White rice - a great side dish to whatever meal (chicken + cooked veggies), especially with a little soy sauce.
*The diet doesn't mention a big food group - Pasta. I think it's because it can be prepared so many different ways, that they couldn't classify all of them in one group. Spaghetti didn't cause me much grief. Just keep it lean. No creamy/dairy pastas, and no shellfish (shrimp, lobster, etc).
Benefits of exercise
The first summer after I was diagnosed, I went to a convention for a weekend. I was hardly anywhere near remission yet, so I was uneasy about my condition. I ended up being on my feet for 12+ hours/day Fri-Sun. And that weekend plus a day or two, I was as regular as if I had never had colitis. Later, I played roller hockey one day for 4+ hours with the same result. So what I've gathered from these and similar experiences is that prolonged exercise that churns your core can help eliminate your symptoms. Walking, running, biking, roller blading, and maybe swimming. Lifting weights has not produced anything similar, symptom-wise.
A community of colitis patients
My experience has been limited, and I certainly haven't tried every treatment and drug available. So maybe you have additional questions or experiences I can't relate to, and would like (to share) advice about that. I found this community forum to be a great resource. The moderators there all have several years of colitis experience and are fairly knowledgeable about a multitude of different treatments and medicines.
http://www.healingwell.com/community/default.aspx?f=38
I originally went there looking to share my story about Floracel as I've done with the testimonial, and now here, and for the same reasons. However, despite their vast knowledge and experiences, I was met with a tepid welcome. They do not seem to even consider the idea of taking AMP. Or at least not 4 years ago-ish, when I visited there. Despite that, I think it's a great resource. They also have forums for lots of other disease, including IBD and Crohns, which you can find here:
http://www.healingwell.com/community/default.aspx?c=4
And here's an interesting link I like to check out every once in awhile. This is a blog by an IBD doctor who has Crohn's. It's neat to see her perspective of things:
http://www.everydayhealth.com/blog/scientist-patient-looks-at-ibd-colitis/
Contact and Feedback
As this is my first blog post, I believe viewers can reply, but as I'm not certain, you can contact me (which most of you probably already did) at Inflameszealot ("a" with a circle around it) hotmail (period) com. I use goofy language there to avoid bots from assembling the address. Please put Colitis or Floracel in the subject line so I know it's not spam and don't delete it.
Through the testimonial, I've exchanged emails with probably about 40 people and even spoken to 2 of them over the phone. Most were grateful, that I could tell. Hopefully it's helpful. My fear in doing this is that I come off as a salesman or a shill for their product. But I've never worked for them nor received any form of compensation. I've never even got anyone to use me as a recommendation for the $50 off.
I know this won't help my case, but... If I could make a request, I'd like for anyone that tries it to leave feedback and let me know what they thought. Because this is one of those products that seems "too good to be true," I'd like to hear your results to help confirm to me that it's working and that I'm not peddling something which only my friend and I have had success. It would be great to hear you're doing well. And if you are, it adds to the growing body of support for those in doubt. I'd like for you to lend your support to them, as I have to you.
Again, please reply or email me if you have any questions or concerns.
All the best,
~Bryan
