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. "GeorgeLizard" 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!
Matt, very nice website. I was looking for lactose free colostrum and
found your lactose free list. Anyway one thing I noticed you don't have is
any information on the Specific Carbohydrate diet. I can understand
how it would be difficult for a young person to follow but It has really worked
for me and I think anyone with Crohn's or Colitis should at least try it for a
couple months. Here is my story.
This advice in the form of my story which I hope and pray can make a difference
in your life. When I was 39 I was diagnosed with a serious case of
Ulcerative Colitis or maybe Crohn's. I recovered well with the medicines.
I stayed away from coke ( which I usually drank about 3 super sized per day) and
deserts and was feeling good in about 6 months. After about a year and a
half I wasn't watching my diet and got another flair up that I could not
get over. I was on Prednisone and Asacol for 4 months and was not
getting better. I had seen a diet for Crohn's on the web, the Specific
Carbohydrate Diet and decided to try it. I was a really a tough adjustment
at first but in a week I was having less pain and gas and in 3 weeks I was
having normal BM's! The basic diet is fairly simple. No SUGAR! except for
Honey, and no STARCH. That includes potatoes, corn, wheat, rice or any
grain. I can eat hamburgers I just order them plain and don't
eat the bun. If I want ketchup or mayonnaise I make my own because
the stuff from the store is loaded with sugar. I found a good Naturopath
doctor who started me on Moducare which I highly recommend. It is calms
down your immune system. No side effects (unlike Prednisone). You
can find it on the web. The best news is if I stay on this diet for 2 years I
may be able to start eating starches and sugar again. Check out the
website if you are interested. It works for 75% of the people who try it. Here's
the link http://www.scdiet.org/scd012.html
I read your story in a book by Kelly Huegel-"Young People and Chronic Illness", I'm
was very impressed at your outlook on life. I don't know a lot of teens your age
that are so together. Thanks for showing an old lady like me (39) that we must
not sit at home and complain but find a way to make a positive difference (hope
you don't mind I used your wise words from the book). I plan to give that book
to my niece when I'm done with it.
I thought I would write this message for anyone out there who has Crohn's and
wonders how a potential girlfriend or boyfriend might react. Maybe this
seems like something really shallow, in comparison to all the other struggles
Crohn's patients have to face. But, after all, this is a site for teens
and having recently been one, I know I would feel so uncomfortable about how my
love interest might feel about Crohn's. Well, I don't actually have it
myself, but my boyfriend does. We are both 22. He had his small
intestine and colon removed completely, he is pretty skinny and underweight
(5'9" and 130), and now he has to wear a bag attached to his body (I don't
know if if has a more official name). I always wondered what the bag was
for, but it never ever bothered me, and I never thought he was weird for having
it. I just assumed he must have some medical condition, but that never
prevented me from pursuing him. The fact that he has Crohn's is totally
irrelevant to how I feel about him; it has no bearing on our relationship (save
for what I need to know in case he has a flare-up). When he finally told
me the truth, it didn't faze me at all, and it made me feel so sad when I
realized he had been scared to tell me! I love him even more for the fact that
he has gone through hospitalization, surgeries, Prednisone, etc ... and he
survived. Maybe there are more closed-minded people in the world, but for
anyone who is anxious about how a girlfriend/boyfriend will react to the more embarrassing
consequences of Crohn's, I want to go on record to say that I personally think
that you should never ever have to feel embarrassed or scared to tell someone
else
that you have Crohn's.
Hi, my name is Hiedi and I have had CD since I was 6 years old and I am now
19. It has been very hard to deal with. When I was 6 I was having really
bad pains in my stomach. I really didn't know at that age what was wrong. At
first my parents thought It was the flu, but it kept getting worse. So they
finally took me to the
hospital and doctors did a series of test. At first they told my parents that I
had leukemia, then the told them that my mom said no I think she has Crohn's, so
they did a colonoscopy and found out that was what I had. The reason my mom knew
I had Crohn's is that my dad and his sister also has it. So my doctor then
put me on like 4 different meds. And I did pretty good, then in 1994 we moved
from Indiana to Wisconsin because my dad was transferred. It was very hard for
me to cope with it. I was so scared that I would have no friends and no one
would understand what I was going through. But after about a year I began
getting sick again. So we kept going to the doctors to figure out what to do.
Finally there was nothing else to do except to have surgery. I went I for
surgery to remove 4 1/2 feet of my small intestine. Since then I have done
pretty good until about 6 months ago. I had another colonoscopy done feb.4 2000
and my doctor thinks I need another surgery. February 8 I go to see him to
discuss what to do. I am really scared and don't want it done, but I have so
much support from friends and family and my boyfriend of 3 years. I am so grateful
for him. He is there for me through everything and always tells me things are
going to be ok. He gives me strength to keep me going. I want everyone to know
things will get better, just don't give up and do what your doctors tell you. Believe
me you don't wanna go through what I have gone through. Just hang in
there.
I think what you're doing is great. I was diagnosed w/ Crohn's disease September
25, 1999. I was in so much pain, I wanted to kill myself everyday. I thought
about suicide a lot. I was admitted to the hospital 3 times.( a total of 5 weeks
) they used experimental medications on me and for 5 weeks I was on hyperal
nutrition to put my bowel at rest. as soon as I started to eat again, I had an
even worse flare up than before. (if that was even possible.) They decided to
put me under the knife. I had my entire colon removed and now have an illeostomy.
I am waited to successfully be reconnected. I missed 5 months of school but just
started back last week. (I had my surgery January 12, 2000.) my doctor and
surgeon, some of the most experienced and best in Georgia, said I was the worst
and WEIRDEST case they had ever seen. I almost died from this disease, but God
chose to give me the best doctors and friends to get me through this. I
have found comfort and support from your site and thank you from the bottom of
my heart.
Next Thursday I am going to have a colonoscopy and a gastroscopy to find out
why I am having weird stomach pains. It started well over a year ago when I
would have days of being sick. Last year I was admitted to hospital and had x-rays,
a abdominal ct scan and millions of other tests. I was diagnosed with a
"virus". After I was releases from the hospital, I have been pretty
much symptom free, a few bad pains now and again but nothing too bad .... until
last week where I got the same dreaded stomach pains as a year ago. Now I know
all the medical jargon is tiring and doctors and medical specialists can be
pains in the butt. I can assure you that we are not all that bad. I am a
radiographer and it pains us too to make you guys drink gastrogaffin or to scull
bucket-loads of barium. It is awful. Most of us feel sorry for our patients and
because I am have been on the other end, I am very sympathetic. The next
time any one mistreats you just politely tell them to think how would they feel.
It may help them wake up to themselves!!!! Now I just await my fate nest Thursday!!!!
First off, I'd like to commend you on an excellent site. In the
hierarchy of popularity and "normality" found within a high school, I
didn't know of anyone who had the same problems as me. What I'm
really after is that on Monday, February 14th, Valentine's Day, I'm getting my
first colonoscopy, and hopefully a diagnosis. For two years I have
struggled with inability to gain wait or grow. I'm almost 15 and I haven't
passed 100 pounds yet. Anyway, for the past two and a half years the
family doctor has been telling me I just have IBS, but now just recently I
visited a gastrointerologist, and he truly believes that I have either Crohn's
or ulcerative colitis. I was hoping for some advice/encouragement
for what I should expect, as it is just kinda new to me.
Hi, my experience with Crohn's Disease is still active.....I'm presently out
of work on a two month leave because of a flare up after the holidays. I first
found out I had Crohn's when I was just 14 years old....it has not been an easy
journey...yet, as I get older I'm learning more and more about my disease and
about myself and how I can help myself....the problem with this disease is it is
such a personal thing and embarrassing to talk about... I found having someone
you can count on to talk to helps relieve some of the stress and anxiety brought
on by the illness.... and another thing is to find something relaxing that you
really enjoy, and engage in that project when you are having a down time with
the Crohn's....this makes it special time not only a time for sickness....I've
gone through a lot in my life, with having Crohn's, but my life is good too,...I
have two wonderful kids, my husband, and a crazy little dog.....sometimes life
is hard because I will be sick at the same time my younger son is (he has lupus)
but the two of us cuddle up , watch movies, and take care of each other.....I
hope that if someone out there needs someone to talk to they know that there is
someone out there for them .......you never need to be alone and
sick.......thanks for listening.
I am 20 years old and have had Crohn's disease for 3 years now. The other day I had an endoscopy done and the results wasn't good. As of now I have had a recent flare up and it was a pretty bad one. I now have Pseudo Polyps appearing in my colon, and the DR is going to put me on another medication. I already take 23 pills a day and I am worried that I am going to have to have surgery done. I feel like everything is getting to me. I go to collage in the mornings and work in the evenings. I am also a father of a beautiful 3 month old daughter that I am helping taking care of. All these things, I feel like, is too much pressure and I don't know what to do about it. I don't get much free time anymore and I don't really have anyone to talk to. I'm always getting hassled by work about being sick and missing days, which hasn't been that much, up until here lately since I've had a flare up. Been missing school and now in threat of being dropped from some of my classes. And on top of all that I have been taking care of my daughter who has been sick for the last 2 weeks. I feel like I have no where to go and I am in desperate need of advice or help. So any of either would be helpful.
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