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. "SummerRains" 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 you help, and your mail!
What's up? My name is Kevin and am a fellow Crohn's patient. I recently discovered your story and website in a book that I read while in the hospital. I was in hospital receiving treatment for problems with the Crohn's stuff. I just wanted to let you know that this is really an awesome site you have put together and that your story and site are both very inspiring to me as well as others.
I just was linked to your web-site from the AOL IBD newsletter. I cannot
express how impressed I am with what you have accomplished and how you are
coping with Crohn's. I myself was diagnosed in 1993 with colitis- my senior year
in college was very weird.... Many years later I started to volunteer with the
Crohn's and Colitis Foundation and now I help raise money so we can find a cure!
I love my job. I also get to do fun things like run a camp for kids who have
IBD. We have
several of them nation wide all putt on by CCFA chapters. I would love to
tell anyone who reads your site about this- how do you think I can best do
that? Once again- I am amazed and very inspired by all you are doing and
have done. PLEASE KEEP UP THE GOOD WORK! I am sure there are days where
you might not feel well or be frustrated, but your sight gives so many a place
to go and feel better. YOU ARE FANTASTIC!
Just a quick note--I got your website over the American Dietetic Association listserv this afternoon. I'm a dietitian who has the Medical/Surgical floor and Peds and two of my units. I'm forever looking for good web sites to tell my patients about and for myself to learn from. You have a great web site and I'll be telling my patients about it. Great job and thanks for all your hard work!
I am a 40-something year old, female who has had Crohn's/colitis
for over 30 years. I wish that when I was growing up and suffering the familiar
symptoms your readers describe that there had been a web page like yours
[or at least a support group as this was during the "Dark Ages" before
computers - can you imagine?]
I can remember missing lots of school, running out of class when I
lost control, looking for the nearest bathroom when I got to Disneyland or a
shopping mall, not spending the night at friends' houses, and not being able to
discuss my "potty problems" with anyone. The doctors were clueless: I
thought I would die for certain when I lost 30 pounds and was continually
bleeding. I remember very succinctly one suggested it was "all in my
head." My immediate response was, "if you had to go to the bathroom 25
times a day, your head might be upset too." I think I was about 15 at the
time.
I saw "Teens with Crohn's" on AOL health page and decided
to check it out even though I am well past being a teenager. I was somewhat
dismayed that the diagnosis process has not changed much - it seems that it
still takes a long time for many physicians to determine what the problem is. I
would think it would be easier given the technology now available as opposed to
the 1960s.
Matt, I want to applaud you for your efforts to make this sometimes
debilitating chronic illness something positive for you and others. I am
available to anyone who may wish to email me re: questions on diet, exercise, my
experience with doctors, treatment, etc. And there is always the Crohn's/colitis
web page. They are invaluable for information but don't provide the
wonderful atmosphere and camaraderie that your web page provides to your
readers. Keep up the good work!
although I have just surpassed being a teen, I am not very far ahead at only 21 years. I read over your list of forbidden foods, and I have seen some of them before. I must say that it isn't all raw or cooked vegetables, but more of the "gassy" ones that seem to produce a bad effect. I would post somewhere that not all food affect everyone the same and that they should experiment as to what they can and can't eat. I too can only eat a burger at the fast food restaurants and only on occasion. I am not as good with the fries though, and anyone who can have that grease with also having Crohn's is really lucky. :) I really miss eating french fries. I can have dairy though and thank goodness b/c I am a cheese-aholic! I am in remission, and for me it was overnight by my own experimentation. I never went on Prednisone, as with family history it would have given me more diseases. There are alternatives and the younger you are the better it is to have those alternatives. Right now I am in my 3rd week of remission, I only have to go to the bathroom once a day, no pain, I can eat almost anything, no nausea, and no meds!! Yeah, and it's like I was never sick before. Sometimes it is hard to remember not being sick and having to watch everything. This is a beautiful website, and honestly even though every patient with Crohn's has a different experience, I found this website a lot more informative than the so-called "adult" websites. And the feedback you post is great, b/c it shows that people are affected differently. One thing I learned with this is that I can't deprive myself if I want something. I know how it will affect me, but at the same time, you can't say, I can never have that again. I will drink champagne at my wedding, and I will eat tacos b/c I have to keep my quality of life. So I look for alternatives--your recipe list is great--but if I am craving something I'll have it. It seems to me that the more grease something has the worse I will feel, so fried foods are once in a year type treats. I don't know why I am writing all this to you, but maybe it is b/c you will listen, and it's hard to have people listen, especially when you are young. Always remember you know your body better than anyone else--even the doctors. and if something doesn't feel right, speak up even if your voice shakes, b/c this disease is yours and not theirs. Especially since you have had it so early in life. I hope to never have surgery. I hope never to come out of remission. I hope the same things for you.
Although I'm IM 47 years old therefore I am not in my teenage years. I have been diagnosed with the disease known as I ABS or Crohn's disease. I was diagnosed back and November of 1999, and it was not until just recently early June before start feeling better. I've been dieting further in the past four months. The diet consisted of substituting milk with soy drink. I had a glass of Slim fast for breakfast and lunch. Dinner consisted of either a salad or a store bought stir fry dinner, containing noodles, veggies, with either chicken, turkey, or pork strips. I made sure to take vitamin B-12 (reported to help with Crohn's). Doctors also can do B-12 injections too. If you follow this regiment be sure to supplement your diet with a good mix of vitamins to include B-12. I've lost approx. 35lbs in 4 months. My symptoms have all but disappeared. I feel that I'm free of this terrible disease, although the specialist I was seeing tells me he believes I still have the condition. Again I'm feeling both mentally and physically on top of the world now. The above was pursued by myself and without my doctors knowledge.
I just wanted to take a minute to let you know what a wonderful job you did designing your site. I passed it on to my colleagues as i know it will be beneficial to them....we are nutritionists.
I thought I would share my quick cure method that works every time for me. I learned it from a wise old health-nut. Chamomile tea. sooths any and all stomach and bowel inflammation- tastes good, drink PLAIN all day long. Eat only white rice and bananas. Only means nothing else no salt pepper or sugar. I do these three things and in 24 hrs I am cured but still do it for a week or more. Pepto Bismol is my only drug of choice when needed. I read where this along with antibiotics have cured ulcers. Using all the secrets above I have found my cure, I hope you-all find yours! Let me know how you do with this protocol. Yes I was in very bad at one time and I am not sure what came first the Crohn's or the diverticulits. The good news is it doesn't matter I avoid seed, nuts, yeast, sugar, and wheat.
I'd like to start off by saying that you have a wonderful website. I just found it this morning and I really haven't had a chance to check everything out yet since I worked today, but it looks really interesting. I've been looking for something like it for years. I don't think I really qualify as a teen anymore though. I'm twenty years old, and I was diagnosed with Ulcerative Colitis ten years ago. It's really difficult finding people who understand. Especially my own age, or at least close to my age. I've never been able to find anyone online or offline that I could relate to until today when I saw your site.
First, I'd like to say that I really admire your page- all of it. The
part about telling friends just happened to be what made me decide to write.
When I was 15, everyone in my family came down with a typical stomach virus -
they all got over it within a few days. For some reason, I just kept
getting worse and worse and worse. I went to doctor after doctor (and test
after test) and none of them could agree on what was wrong with me. It was
not until I was 17 that I was given a complete- and what seems to be final-
diagnosis. I have acid reflux disease, a severe dysmotility, IBS, and
various food allergies (the most serious one being to gluten, or all wheat
products). Despite all that, Crohn's patients go through much worse than
what I do. However, I do not - or at least haven't yet, and probably
won't- experience remission. But I've come a long way in the past 4 years.
I've learned how to deal with it better- both physically and emotionally.
No matter how bad it may get at times, I always pull through successfully.
I just finished my first year at college. I was able to attend my first
choice. It's a long way from home and very different, but I survived and I
love it. I went there to major in Child Life (using play therapy
techniques for kids in hospitals). Guess how I got inspired to do that.
Anyways, I want to offer some hope for high school kids with chronic illnesses.
If you want to go away to college and feel that you just may be
able to do it- then go for it. I think choosing a small school helps a lot
though. All of the faculty is very understanding and accommodating.
I live in a dorm, but was able to get a single room due to my condition.
This way, I have my privacy and peace and quite when I need it. I don't
have my own bathroom, but I got used to sharing- especially since there are not a lot
of people on the floor and the bathroom is never crowded. As for all my
diet restrictions, the dining hall was just as accommodating. All my meals
are prepared separately- whatever I want, however I want it. Although I
eat alot of expensive substitutes (lactaid milk, rice bread, rice pasta, rice
cheese, etc.) it's still covered under the meal plan and they do all the
shopping, unless I want to come with them. As for the social scene- it's
never been better. I'd forgotten how difficult high school was until I
read your page. I cried remembering when I first had to explain this to my
friends. I remember that on the rare occasion I was actually well enough
to go to school I would dread having to face all the looks, and "What's
wrong with you?"s, and rumors, and jokes that people thought were harmless
but really weren't. My true friends were as understanding as they could
be, but it's almost as hard for them as it is for you to accept that you're
never going to be the same. And not being able to go hang out with them
and do all the things they're doing makes you feel even more isolated. I
thought that making friends in college would be even more difficult.
People I've never met before in my life would see me taking all this medicine (I
have to take a lot throughout the day and can't wait for a chance to do it in
private). I was worried about explaining to total strangers that my whole
digestive system is out of whack (that's usually what I say when people ask).
But I've found that it's actually easier for strangers to accept this than it is
for people who knew me before I got sick. Living in a dorm has given me
the opportunity to form some very strong relationships. My best
girlfriends live right next door to me, so we spend a lot of our time together.
I also started dating a guy who lives in my building. We've been together
for most of the year and have become very close. When you're practically
living with people, you get to know each other very, very well. All of
these people have seen me at my worst. I don't have to explain to them
what's wrong with me because they've seen it. And they've stuck by me
through it- helping me however they can. I am so grateful for the
opportunities I've been given this year... but even more grateful that I
had the courage to take these opportunities. Through this letter, I hope
to share that courage with other teens with illnesses. I know how
difficult it is to be a teen with a chronic illness that bars you from certain
life experiences. But I also know that because of my chronic illness I
have been granted certain life experiences that I would not have had otherwise.
I want to encourage others to take advantage of every opportunity they have.
If it doesn't work out, then it doesn't work out. But you'll never know
unless you try.
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