The Feedback and Experiences Page: January 1998
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 some 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. "Servo5678" 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 day or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
From: Derek
Hi, my name is Derek Allen. I was diagnosed with Crohn's in October of 1997. (I don't remember
what day it was off of the top of my head). When they told me I was going to have to take 16
pills a day for most of my life, I was very unhappy. I'm also a diabetic, and I have to take four
shots a day of insulin, and now on top of this I take 16 pills a day.
I found out about my Crohn's disease after I had my appendix taken out about two weeks
before my school year started. I was having tremendous pain on my lower right stomach. They
operated and noticed that my intestine was inflamed, but they wanted to wait a week to see if
the swelling was from my appendix. Two weeks later I went in for tests, and, as you know, I was
diagnosed with Crohn's.
I have a wonderful girlfriend that I have been going out with for a year and seven
months. When we first started dating I thought she would be scared of my diabetes and leave
me. She didn't mind. But when I was diagnosed with Crohn's, I absolutely KNEW she would
break up with me. Well, I was wrong. She is more determined to help me through my health
problems and have a long life than maybe I am.
I hope I haven't wasted your time by writing this to you, but it was good to know that
someone would read it.
From: Caitlin
Hey! I just discovered your page a few days ago, and I come here at every chance! It's so
comforting to hear everyone's stories and experiences. I guess you could say that i am a lucky
recipient of CD....I've never been hospitalized & i do not get flare ups very often. (knock on
wood! :) . It's a shame that people get it, but it is great to see how everybody makes the best of it!
From: Deborah
Wow - what a fantastic site!!! I have Crohn's and the last few days
have been pretty bad, so I decided to look on the web for a support
page. This is more than anyone with IBD could ever want. From the
"experiences" to the recipes to just reading about people just like
me was reassuring. I truly commend the "Webmaster" for a job well
done!
From: Laura
I think that this site it great for teens with Crohn's. Especially for me cause I was just diagnosed
recently and still feel like the odd ball. I guess I feel this way cause I've always had something
keeping me from doing what my friends did. So now with Crohn's I feel like the weirdo from the
group even more. So I think that this page has helped me understand my condition
more and
has made me feel like I'm not the only person in the world who has this.
From: Jennifer
Hi there my name is Jennifer, and I was diagnosed with Crohn's disease when i was 11
years old. I have never had surgery, and was doing alright not being on any kind of drug
therapy until 5 months ago. I had a flare up, and this time it was real bad. So I went into emergency, at
the hospital, and was told I had acute exasperation of my Crohn's. I stayed in the hospital for 5
days, where they proceeded to give me a intravenous steroid called Solu Cortef. It made me
swell up like a blowfish, and it made me scared. I had never been on drug therapy
before, and
all the sudden in a matter of two days I physically looked like a different person.
I was all doped up on Demerol, and morphine, but still no surgery. Then when I got out of the
hospital, right away they put me on Prednisone, Cipro, modulon, and Pentasa, and a little
Demerol for the pain at home. After one night of taking my medication I started to have optical
illusions, from the Cipro, and the modulon. that scared me too, because I thought I was having a
serious reaction to the new medications. Well about 2 months ago mt GP physician put me on
entocort (budosinide), and I haven't felt this good in years. Sure every now and again I have my
days where I m feeling the Crohn's, but it is better then everyday. Entocort did not have any of
the side effects that Prednisone had, and I feel normal! When I was younger, back when I was
first diagnosed, my mother tried her own ways of curing my Crohn's with no drugs, just natural
diet and supplements with the direction of a natural pathetic physician. And to this day I do not
know if it did me any good, but I do know that I'm almost 21 years old now, and have had Crohn's
for 11 years, and have NEVER had surgery. And was never on drug therapy until 5 months ago.
And even now my Crohn's is not as bad as everyone I know that has it. My aunt has
Crohn's. We
were diagnosed 3 weeks apart, and she has had a foot of her small intestine removed......
From: Chips
I'm an older guy (52) with Crohn's, but the symptoms started back in my teens (not diagnosed for
a dozen years).
I just spent the last hour browsing your site. Wish it had been available when I was a teen. For
that matter, I wish there had been computers then. Telephones. Electricity. Running water...
I'm a university dean of students. Every year I meet a student or two needing assistance
because of a UC or Crohn's flare up. Your site is an excellent resource to share with them,
especially since having one of these diseases can be such an alienating, lonely experience. In
fact, maybe I'll start a "Teens with Crohn's" mirror site for older folks, perhaps call it something
like "Old F*rts with Crohn's".
Seriously, in addition to the content of your site, I'm very impressed with the planning and
design. You've made a complex site fun to explore and easy to navigate. By any chance are
you headed for a career in Information Science?
Sorry I don't have any awards to bestow on you -- since you're not one of my students, I probably
shouldn't put you on the Dean's List. Well, perhaps honorary status?
Thanks for the immense time and effort you've obviously put into this!
From: Greta
I'm 30 (hate the age and hope you don't mind) and was recently diagnosed with Crohn's Disease
after five years of hospitalizations and illness for reasons ranging from dehydration to "unknown."
Your website is wonderfully informative. I came to search for information about CD in children,
because my eight year old appears to be showing the same signs (stomach pain, diarrhea...and
she has these really unusual skin rashes--something I've yet to have the pleasure of
experiencing LOL). I was concerned about the effects of the disease in a child and came looking
for reassurance. I've found some great information for me, too. The medicine and recipe pages
were great.
I'm just starting out with the medicine, and I was comforted in reading other experiences. My
doctor decided to start with conservative meds at first. I'm on Flagyl and Colestid. I didn't see
anything posted about Colestid and was wondering how often this is used in CD? I understand it
was originally used as a cholesterol medication. If you know anything, please pass it on.
Thanks for such a great site (even though I'm not a teen)!
From: LuLu
Hi!
I was just surfin' your web and read the experiences of some of the teens and others who deal
with this. Are you the one responsible for the info on the website? If so, I am very thankful. First off I
don't want to disappoint you but I'm not a teen. I hope you don't mind but I needed to talk to
someone who could possibly give me some insight. My husband was diagnosed with Crohn's
when he was 12 yrs. old. Way back in the prehistoric times of the early sixties, there
was not
much on this disease. My husband's father even went as far as to get a priest to do an exorcism
on him for cryin' out loud! Over the years he learned to deal with the pain. At 35 yrs. he had the
operation and had a piece of his intestines taken out. He was okay after he recuperated. He
was in remission for awhile. I met him after the operation, which I was told it almost took his
life. We had a great life. He was a successful accountant for a large company in S. Florida, two
great kids... and a partridge in a pear tree. This disease was a minor inconvenience
to which I
made the necessary adjustments to make a functional family. Now he is 50 yrs. old but looks
like in his thirties, which still seems old to you, but now he seems to be worse than ever with life's
stresses even though he keeps on going and keeps on smiling. I need to know what do the
doctors say when you are diagnosed with Crohn's. From what I read on the web I learned more
about this disease than before. I would look it up and it would say basically it was a disorder of
the intestines and no cure, restricted diet. A couple years ago my husband almost died within a
matter of a few days of severe dehydration. The doctors called it a flukey virus because they
didn't know what it was. My husband didn't want to connect it with his disease and to be honest I
think he may be in denial about it. Your website can help many people. It helped open my eyes
and will help me to understand it better. I'm going to make him sit down and read your stories. I
may not know the pain you suffer, as an observer of this disease, I feel for you and those who
love you. On a positive note, which is the recipe for life, we are a close family partly because of
it. We are restricted as a family to go and enjoy meals but we can get into some pretty good
board games and enjoy each day because when you live each day to the fullest, you actually live
better than a lot of "healthy" people. I have the same problem of outsiders not understanding this
disease. When I'm the one painting the house and cutting the grass it looks like my husband is
lazy and it's because he doesn't have the energy. I don't mind doing the hard work I'm 12 yrs.
younger and full of it. (full of what is up to you, tee hee) anyway, I want to wish your young self
hope for a future full of your wildest dreams. No matter what, if you believe, it will happen. Crohn's
or no Crohn's, life is worth living. I'm going to keep reading as much as I can. Thanks for teaching
me a thing or two about this disease and I hope to hear an answer from you about what the
doctors say nowadays when you are first diagnosed.
It does my soul good to hear from others who are going through this, not that I wish it on my
worst enemy, but you're not alone. I think you're doing a great service to us all who
experience this; the ones who suffer with it and those of us who suffer with watching and picking up the slack.
THANKS AGAIN!
From: David
I am certainly anything but a teen (40), but enjoy many foods that teens do. LOVE fast food,
what can I say.
Was just diagnosed with UC, and have been looking around the Web for information on what to
and what not to eat. Thank you very much for the information on this site.
I hope that I have not invaded your space by coming into an area marked for teens, but I have
gathered lots of GREAT information. Congratulations on a truly WONDERFUL site.
From: Jen
I have been using your page since I was diagnosed with Crohn's in April of last year and it has
really helped me. How
do you find time to do all of this work? I just wanted to thank you for the wonderful
work you have
done and the time that you must put into this page. Most people our age would never do that.
From: Catherine
Hi I'm 18 and have been dc with Crohn's since September 97. The day after I had a Colostomy,
WHICH I REALLY HATE. As my Crohn's was so bad it had to be done immediately. I was told it
was only temporary, and in about 12 weeks it would be reversed. 2 months later I'm told it will
be in the new year. Today I'm told they have no idea when it will be reversed maybe in a year.
The doctors seem to think my life hasn't and shouldn't be changed by my colostomy but it has.
I'm trained as a chef but they do not want me doing that, so I've got to make a career change, but
as they keep changing their minds about when I will have to go back into hospital and I have 2
hospital appointments a month I can't get my life sorted as I'm always waiting for them to give me
a slightly more definite answer so I can either commit myself to a job or just keep looking for
temporary work so I won't have to let down an employer. The colostomy and not knowing when
it will be reversed is really getting to me, as I can't make any plans like holidays, (which all my
friends are talking about and planning which is making me even more depressed.) If anyone else
has been in the same situation or has any advice please email me. Hope you all have a
healthier year. Keep up the great web pages!
From: Marian
What about the people who stopped taking there medicine and are just fine, like me? If there are
any others who did it too, they should tell how they are doing.
From: Joanne
I'm writing you from Nanaimo, British Columbia, Canada. I am in awe of you and your incredible
dedication and talent. Your website is quite fabulous!!
My daughter, Morgan (19) has been dating a very caring, gentle and thoughtful young man,
Chris (21) for about 8 months. He was diagnosed with Crohn's about 2 years ago. Chris has
never been secretive about his CD, however he isn't one to dwell on it or talk about it much at
all. Your site has helped me understand some of the things he might have experienced.
Both my daughter and Chris have also visited your site. Perhaps he'll add his *bio* to your
marvelous list... Most importantly, he has had quite a few belly laughs while visiting your site. I
frequently hear great raucous laughter from the den...
Thanks again...consider yourself bookmarked!!
From: Sharon
Hi, my name is Sharon and I am 12. I first started having pains in my stomach in late September
(97). At first I thought i was coming down with something. So one night I was laying down and
pain just shot to my right side. My mom took me to the hospital thinking it was appendicitis. They
sent me home saying I had intestinal cramping. It still kept up so we went to my doctors and they
said it was something else and sent me home with more medicine. Around this time
I found when
and after i walk my knees and ankles would just start killing me. (After time the rest of my joints
joined in) After 2 months of being misdiagnosed from parasites to faking to colitis they told me I
had Crohn's. I've learned about it and thank goodness i have a mild case. Right now i am taking
12 Pentasa a day, 3 Prednisone (getting off it very soon) Zantac and methotrexate. My family
have been very supportive. Especially my mom. The thing she says that keeps me up is " God
has a reason for everything he does"
P.S. Great site!!!!
Hi, I'm not exactly a teenager. I'm 23 years old and was just diagnosed with Crohn's in March of
1997. I was hospitalized like many of you and followed through with taking my medication. but
soon I noticed how much better I was feeling and COMPLETELY forgot to take my medication
for I guess 3 to 4 months. Well now I am definitely suffering. I spent Christmas in the bathroom
with the runs and new year's was spent running from the bed with pains to the bathroom to vomit
and poop. I'm trying to find someway of remembering to take my medication at the time I
should. You see I work full-time and attend school at night. Throughout my busy day it's extremely
difficult to remember. I need to remember or else I will end up on Prednisone again which I
definitely do not want. Please help. Tell me any thing that you use to remind yourself. Thanks!
Go on to February 1998
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