The Feedback and Experiences Page: May 1997
Thanks to everyone who has been sending me their experiences and comments about the page. It's really nice to know that someone is 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, 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. JOE114 is not a complete address. I must also have the "@whereever.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 day or so, e-mail me again and remind me, please! Thanks for you help, and your mail.
From: Robert
Hi,
My name is Robert. I have to tell you that I am not a teen, however, I
believe
that I have had Crohn's since I was a teen but not diagnosed until my late
twenties. As most Crohn's sufferers I have trouble gaining weight. However,
my
doctor has put me on this diet and I have gained 14 pounds in the last
three
months and weigh the most I have ever weighed in my entire life without
drinking those nasty shakes. i am now up to 147 and I am 5'10. I am not on
a
liquid diet and I can usually eat what I want when I am not having flare
ups.
So when I am feeling well I eat my usual three meals a day. However, at
night,
this is the secret, I eat three Reeses Peanut Butter Cups and one peanut
butter
and jelly sandwich before I go to bed. It was remarkable how fasst I
started to
gain weight. My doctor did not tell me to eat the sandwiches, I did that on
my
own. But he said that 3 PB cups a day will add a pound to your body every
ten
days. With the sandwiches I have been gaining about a pound and a half a
week.
I hope this helps somebody. I want to get myself up to 160 pounds one day
and
lool like a normal healthy person without people saying that I look to
skinny.
Robert
My name is Ross Broadway and I was diagnosed with Crohn's disease about
a month ago. I had never heard of the disease until my doctor suggested
it may be what was causing my weight loss and diarrhea (sp?). I lost
over 30 pounds in a three month period. Dropped from a size 32 waist to
a size 29 waist. I am 18 years old and I work as a pharmacy technician
for Revco drug stores. I have an advantage by working there because I
get to meet many people that come in to pick up their medications. I
can talk to one person who has had it for 20 years with no problems
except a few hospitalization due to inflammation. The very next day I
can talk to a person who has had it for only for six years, but she is
beginning to have more difficulty dealing with the pain. So far I
haven't had any severe abdominal pain, praise God! I fear that soon I
may learn something different because I plan on entering Appalachian
State University next fall as a Music Education Major in the area of
voice. My life has done a complete turn around since last fall and then
this hit me only a month ago. I am a very determined person so there is
no way that I would ever let anything like this prevent me from reaching
my goals, but it is hard to focus sometimes when I'm not sure what's
coming next for me. I encourage everyone to keep your chin up and
realize that you can live with Crohn's. A lot of the symptoms can be
worsen by anxiety and stress. Make sure all reason for living is not to
"go on" but to be yourself and not let this disease interfere with your
everyday life. Just remember, smile God loves you even when you think
that you are alone. Being alone is impossible with him in your heart.
Thank You! Ross Broadway Lexington, North Carolina
From: Sandra
Think it's a great page!
I'm a 16-year old girl from Sweden, was diagnosed with Crohn's last week
(May 7 1996) after a colonoscopy. Didn't know much about the disease before
I entered these pages.
(Hey Sandra! The e-mail address you gave me doesn't work. Try again and we can write to you! ---Webmaster)
Hi,
I have a friend who has a granddaughter (a teenager)
recently diagnosed with Crohn's. She asked me to use my
internet resources to find low fiber recipes. Apparently
this has been suggested. Going through your pages, I found
and have copied your Lactose free recipes.I gather that lactose free is important to those with
Crohn's.
I'm not very familiar with this condition so am trying to
become knowledgeable and help my friend who will be cooking
for her granddaughter this summer.
Any suggestions about Low Fiber or Low Residue Recipes would
be appreciated.
Hey, Wuz up.. My name is Kristin, and I was diagnosed with Crohn's disease
about two weeks ago. I was very scared when I went to the hospital and
didn't
know what was going on ..I am 15 years old. I had surgery and had 6" inches
of my small intestine removed, I am confused because my father tells me to
cut dairy products out of my diet, because it would decrease the chances of
a reoccurrence in the future, yet I've never experienced any symptoms that
would
conclude any kind of allergy to lactose induced products. My mother says
that
it probably wouldn't do any good to cut out milk products. since i'm not
allergic to them. I don't know what to do. It's confusing, so anyway, I am
new at this and just wanted to share this episode with you. My prayers are
with you and I hope that u are doing great and managing Crohn's ok.. seeya,
From: Mrs. W
I would like to take this time to thank you. You see I am a mom of two
kids,
one of them in high school. He is also the one to bring home this web site. I ran
across it on our desk so I thought that I would look it up. Much to my
surprise it's just what I needed to be reading.
You see I am 36 and have lived with IBS for several years now. I am tired
of
going to the hospital for tests. And I have had two major operations within
the past year. Now my doctor wants me to have even more tests, which as a
parent I cannot afford. And not to mention medications.
You see when I read thru the medications on the web site I recognized
Flagyl,
this one my doctor just put me on. And all my symptoms he is telling me will
go away with no problems, that's easy for him to say he is not the one on
it.
I feel like I am sucking on a metal pipe all the time. Then before that I
was
on Lebrax for my cramping of the intestines. Well, that one was almost as
bad
to me. It left me with mood swings, and trust me it was not a pretty
picture.
(Just ask my kids.) My doctor also put me on a drug called Questran. It's
not
too bad, although alot of my symptoms of IBS will still occur.
Two more bits of info here, you see I am also a teacher, so I do find it
hard
to work full time, so I am not currently working any longer. (Due to it's
hard to tell 30 kids, wait till I get back from the bathroom) And I also
have
a tumor in my liver, that's what is the hardest. And even some medicines
cause more problems with my liver. I never know how long I do have, It's up
to the Lord. But I am still here. Thanks so much.
From: Randi
There's no proof, but I think it's very prominent in Jewish people. I'm
not a teen, I confess, but I just turned 20 and I was diagnosed when I
was 15. I think this page is brilliant. I'm so glad you put your web
site together.
From: Jen
I have just been diagnosed with Crohn's Disease, and have found
this web page. I am still going through tests, and having a lot of pain in
my abdomen, especially when I get stressed or nervous. I was scared for a
long time because I thought I was anorexic because I never ate. I hate it
that my friends don't understand too.
From: Cheryl
I think that what you have done here is AWESOME! I'm 19 year's
old and was just diagnosed last May with Crohn's/Colitis. I live in
Toronto and find that no one (or almost no one) knows what IBD is. This is
the first time I've been to your site and I'm impressed. You simplify
everything the way we see it. Thanks.
Like so many others, I think this page is fantastic....talking
openly
about IBD is greatly needed. I am 20 years old, and I was diagnosed with
Crohn's Disease
when I was 14. I had my ups and downs for a three year period after
my diagnosis, and finally, at the age of 17 I opted for surgery. I was
at the stage of my disease where I had to consider taking much heavier
medications (I have never been on Prednisone). For me, surgery was the
route I wanted to take, and it was totally my choice. I had come to the
point where it wasn't absolutely necessary for me to undergo surgery,
but I knew that eventually I would have to. It was the best decision
I have ever made in my whole life. Don't get me wrong....I was incredibly
scared, and I flipped back and forth between going through with it a and not going through with it. For me, it was a question of the quality
of life that I missed having and so desperately wanted back. For the 4
months leading up to my surgery, I did not leave my house because of the
pain. I knew that for me this was not the way for me to live. Well, two
and a half years since my surgery, I am still healthy. I take 3 to 6
Pentasa each day as studies have apparently shown that continuing on Pentasa after surgery prolongs the amount of time before a relapse occurs.
Everyone's experience is different. My doctors describe my case as
towards
the milder side, yet I have friends with much worse cases than mine, and
they are afraid of surgery as an option. I am not saying that it is an
option for everyone...but for me, it allowed me to finish my senior year
of high school with a bang and go away to university for the past two
years
and experience life. Having Crohn's disease has made me the strong person
I am today. Sure, I still cry about it sometimes....I think that's
normal...
but it is part of me, and only over the last little while have I been
growing
to accept that. Take care.
OK, this is the first time I've ever done this so bear with me.
I'm a 16 year old female, and I've been sick a lot lately. At first my
doctor said I was lactose intolerant, so I cut way back on dairy. That
worked for awhile, but then it got s that I was getting sick no matter what
I ate, then they suggested a barium enema (did I spell that right?) If
there are any of you who haven't had that done, it was one of the most
humiliating experiences I've ever had to endure. Now they think I have
Crohn's. Tomorrow I get to go to another doctor, and I'm going to be humiliated
again, just with different instruments. I've missed a lot of
school, I'm sure you know what it's like. I've had a hard time with people
believing that I'm really sick. You se, I go to a high school with 300
kids in it so everybody knows when I'm gone. I'm just really sick of no
one believing me, even my own sister. I have this friend who is wonderful,
except for that fact that she is never sick. That's OK for her, but she doesn't think anybody else should either.
It's bad enough that my classmates don't believe me, but my best friend? I
don't need that! The way I've portrayed her is as kind of a b*tch (can I
swear on this?) but she's not. I feel that if only people understood, they
would sympathize. I've read those suggestions that you've posted here, but
I really don't feel those would work. My situation is hard because I'm in
speech and if any of you out there are in it you know how draining it is,
you are gone for over 12 hour days and you have no chance to rest. I can't
eat anything at the meets because all they serve is junk food. I miss
food, I used to be able eat whatever I wanted and never gain weight. I
love cooking and experimenting, and trying new foods. I love ethnic dishes.
From what I read that is all over now, that is what will be the hardest
for me, I can't live without my Kit Kats and Coke, somebody like me please,
I would like to hear
from you, I think I need people like me to get me through this.
From: Naomi
I liked your page a lot since I was diagnosed with IBS last summer though I've been suffering from it since
I was around 12. As you know IBS and
Crohn's are similar diseases, very.
But IBS is still not really explained well and doctors aren't sure. They
don't know the cause of Crohn's either, at least from what I've read. But
I
was thinking that you might add Candiditis(sp?) information since I was
reading about that and people that suffer from that are often diagnosed
with
IBS. And I've also read from certain places that IBS is just a diagnosis
when there are no other reasons or identifiable causes. Anyway, I just
thought you could add that. I was reading through your jokes page and
found
those jokes to hit home! I know all those feelings and here I thought i
was
alone. Hmmm...makes me think it's time to start seeing all those doctors
all
over again....I absolutely refuse to now since they could never diagnose me
with anything!!! Kept hearing it's all in your mind! Thanks for the
wonderful page!
Well, I had better go now, no pun intended.
I was diagnosed in November, and have been struggling with
treatments ever since. Remission seems unrealistic to me. I've been very
depressed Any advice?
Hi I'm Jasper from Holland.
I want you to hear my story. I hope you understand because my English is
not so well.
When I was 13 years old my stomach began to hurt, not just hurting, but a
lot of pain. The doctor didn't know what to do and gave me strange
therapies. When he directed me to the hospital for a lot of research,
after a month the doctors knew for sure it was the disease of Crohn's. I
was for 10 and a half week in bed in the hospital. They treated me with Prednisone
and gave me just a sort of milk( I don't know it to say in English) as food through my nose.
When I was better I was growing a lot and become heavier, just like
before my disease. Now am I 21 and still healthy I think, every year the
doctor is checking me.
Now I have some questions:
Can you grow over the disease, the doctor said it's possible.
And am I an exception that I had at such a young age, doctor said?
I like to have a response.
Hi. I'm Carolina. I'm 19 years old. I live in Colombia, South America and in my country this disease isn't
common. So,
I would like to know people with this kind of problem, so they can help
me to adapt to my new way of life. I've been looking on the internet
about the disease. It was discover only two days ago and that has change
me, I feel very strange. Thanks a lot, and I will be very interested in
getting your response.
From: Mark
I have had Crohn's now for five years. I have had an ostomy
(which was later reversed) and numerous trips to the hospital
for tests. I have been reluctant to get involved in support
groups or maintain a strict diet. I hope this page helps motivate
me to do what I need to do. I may even try some of the recipes..
Go on to June 1997
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