The Feedback and Experiences Page: June 2003
Thanks to everyone who has been sending me their experiences
and comments about the website. It's
really nice to know that lots of people are getting some good use
from it. Here's a sample of the mail I've received. Some letters
have been edited for space. If you want your e-mail address
displayed by your comments, be sure to let me know. Otherwise, I
won't put it up. After all, we all value our privacy! Several
people have a nasty habit of not fully typing their e-mail
address, especially on the forms. "back@last" is
not a complete address. I must also have the "@wherever. com"
to send you a reply. So please, send all of the information
for an accurate response. One more thing: I get so much mail
everyday that sometimes I accidentally overlook a letter or two.
If you don't get a response in a few days or so, e-mail me again and remind me,
please! Thanks for your help, and your mail!
From: Megan
I am 16, and I was recently diagnosed with Crohn's disease. Adjusting to the change has been hard, but I am learning to deal with it. It is sometimes hard for me to remember to
take all 9 pills a day. I am on Asacol and Entocort (corticosteroid - no side effects). Entocort only works if you have
Crohn's in the ileum. (That's where I have it). But about foods to eat and stuff. I just wanted to let people know to avoid fast foods at all cost. If you HAVE to eat fast food then eat Burger
King (It's grilled, not fried). If you have to eat McDonald's...then stick to the grilled chicken sandwich, McChicken, or even the Filet-O-Fish. You
guys...Crohn's is hard to live with. Sometimes it's like you're not EVEN LIVING. Remember...MEDICINE STOPS THE DISEASE FROM PROGRESSING, IT CAN EVEN MAKE IT GO INTO REMISSION. IT DOESN'T ONLY TAKE AWAY THE SYMPTOMS OF THE DISEASE...IT CAN STOP YOU FROM ONE DAY HAVING YOUR COLON TAKEN OUT. 1 OUT OF EVERY 3
CROHN'S PATIENTS WILL HAVE SURGERY ONE DAY.
From: Lizz
I really enjoyed your site. I'm in my twenties now but was only 19 when I was diagnosed. For six years the doctors had been baffled and misdiagnosed me; they were no help at all until I was so sick I couldn't leave the house for three months! Here are some things that I have learned over the past four years:
- People who take Prozac or similar drugs can develop IBD. I found this out after my doctor tried to put me on it (the final misdiagnosis before I got so ill) and I was talking about it with a friend of mine a few years later. Basically Prozac works with the serotonin receptors. Your brain has these. (Duh!) Guess where else has them? The intestines! They actually have more serotonin receptors than your brain. If someone has an IBD and is currently taking these, they may want to consider taking a break (unless it would be dangerous to do so) and see if their symptoms lesson. I've never met a doctor who would agree to link the two together or admit that it might have this affect, but if you do some research, you'll see I'm right!
- Soy Delicious makes a dairy-free and chocolate-free (some do have chocolate, most use carob, read the ingredients) soy-based ice cream that is better than any real ice cream out there! It is fabulous. The price is more than the generic ice creams that supermarkets offer and is around what you would pay for something like Ben & Jerry's. (And just as good!)
- I have my suspicions about UC causing rectal cancer. If you look at the diet that most patients are given you'll see that it's very low in both raw food and fiber. What has been proven to help prevent rectal cancer? A healthy supply of vitamins and minerals (mostly found in fresh fruits and veggies) and a healthy amount of fiber (it's so important!) to help keep the intestines swept clean of debris and old food. It might not seem like a problem for someone with this disease to keep their intestines clean (since we move our bowels so often compared to most people!) but fiber does play an important role in health. It also helps to bind stools to make them less irritating. (Only if you can handle an increased stool volume, which it can add too. It seems to either really help or irritate, depending on your own circumstances.) Now, I realize that not everyone with UC can eat fiber or fruit (I couldn't for at least the first year!) but once it's tolerated, it might be a good idea to add it as you can. Most of the people who claim to have cured their IBD have done so on a raw-food diet and recommend a high level of fiber and raw fruits and veggies. Juicing is also highly recommended.
- I haven't had a flare up or even diarrhea once in the past year and three months when I've taken my Acidophilus tablets that day. I usually take three before breakfast and one before dinner. I don't get the gas (unless I eat broccoli) and it has helped to reduce my number of BMs per day from 3-4 to 2-3. Again, it might not work for everyone, but if I don't take it that day, boy do I notice it! Even when I forget it, I am still incredibly improved from a year ago. The worst thing that happens is some extra gas and possibly having to do one more BM that day.
- My lymphatic drainage therapist cured himself of IBD during his training. After constantly receiving the LD technique during the training seminars and eating wholesome foods he stopped having problems completely. I have gone to him several times and I feel incredibly better than I did before overall (no headaches, etc.). I also notice that when my lymph system is unblocked (it can stagnate causing many health problems) I have more problems with indigestion and gas than after a treatment. I'm about to go on a once-a-week schedule for six to eight weeks and see how much it can help. Most LMTs who have this training advertise it and it's an INCREDIBLY relaxing therapy. Not gross like it sounds at all!
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