The Feedback and Experiences Page: June/July 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. "BANJOKAZOOIE42" 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!
We've seen your web site and thought it was very well done. We've added a link on our site. It is
in the Library section under "Basic Facts."
I was just surfing around on the topic of IBD/Crohns/Colitis and happened upon your page...Its a
great page, informative and helpful! I thinks your doing a great service to teens that are trying to
come to grips with their disease or just looking for others to talk to.
Actually I'm not quite a teen anymore, I'm 21, but I got colitis when I
was 17 and have lived with it ever since, so I'm definitely no stranger
to the subject :(
I'm from Montreal, Quebec, Canada and the reason I was looking for sites
(besides the obvious one that I have colitis) is that I will be helping
to develop the website for the IBD clinic/wing of the Montreal General Hospital. The clinic is done jointly with another major hospital here,
the Royal Victoria, and they want to set up a site. I was looking to see
what is already out there, what isn't, what people seem to want most, so
that initially anyway the page is relevant. I think this sites a real
gem, and once we get to work on the page, I'll make sure that there is a
link to here :)
Other than that, I've been through just about every possible colitis related events short of having
surgery, from meds to tests to coping, so if anyone here wants someone to talk to
that's been
there (and is still there :) ), drop me an email.
I am 16 and was diagnosed with Crohn's in May. My symptoms all seemed to start shortly after
I began taking the acne medicine Accutane. The product insert stated IBD as an adverse
reaction, but the doctors don't believe that the Accutane caused my Crohn's. I had
diarrhea for
months, mouth sores and the terrible abdominal pain. I was wondering if others have been on
acne medicines prior to having the symptoms of Crohn's.
Maybe we can find a correlation that will help others in the future. If you have been on
Accutane or other medicines for acne, I would love to hear from you. Feel free to e-mail me.
From: Melanie
Hi. My name is Melanie and I'm 16 years old. I've been diagnose
in
February 1997 and I was immediately put on Pentasa. I was sicker than
before. I went to see a specialist and he put me on Bundesonide. It's the
better thing that could happen to me. It was the calm after the storm. I
felt great for the first month, no diarrhea and no pain. After a month I
started having pain after I have eat a big supper. But now everything is
great. It's been a month since I had cramps. You have to take 3 pills of
3mg one time a day, preferably in the morning because like 7 hours after
you talked it you'll have a little "buzz". And if you forget the take your
medicine you'll feel it because the cramps and the diarrhea start again.
I
think that the only thing to the Bundesonide does put the pain asleep. But
I think it's the best drugs you can have, it got no side effects except the
little "buzz" I recommend it.
I have had Crohn's Disease since I was 9. I am 12 years old and had
surgery last December to remove 60% of my large intestine. I have worn a
colostomy bag ever since and also have a Broviac cathether in my chest
in case I get sick again so they won't have to poke my arms. I am going
for tests next week because they are going to reconnect me sometime in
the next month or so. What I would like to know is, is there anyone out
there who has had a colostomy bag and then been reconnected? I would
like to know what it is like and if you had any problems so I know what
to expect. Please write soon if you have any ideas.
I just found your page and I think it is fantastic!! My name is Sara,
and I was diagnosed with CD this past January. I am trying to cope with
the daily problems that affect me because of Crohn's. I would love to
see more about how people deal with having bowel movements 6, 7, or
more
time a day. This is my biggest problem, and causes me to be deficient in many vitamins and minerals. Any info on this would help me out
tremendously! I hate feeling run-down and unenergetic all the time. I
also have noticed that since I have had CD symptoms, I have been struggling to keep my face from breaking out. Has anyone else had this
problem, or is this a totally unrelated event? THANKS!
From: Ashley
Well sometimes Crohn's makes me lazy. I just don't feel like moving or
doing
anything. So my friends ask questions like why are you back there?? Your always in front
of me!!! I just say "it's my Crohn's." When they ask what it
is, I say it's an infection in my intestines. It's as easy as that!!!
From: Lisa
I enjoyed reading the stories about other people with Crohn's. I
just found out I had it. I am 12 years old. Your website has helped me
understand Crohn's a little more.
I don't have Crohn's Disease, but I do know a guy that does. He
recently got done his High School Baseball career and towards the end of
it this disease hit him pretty hard, and it scared a lot of the people
at our school because we didn't know what to do or how to react. i
guess what Iam saying is will this person really die in 25 years with
this disease, because I really don't want him to die, cause he is just
way to young.
From: Sarah
I think some good things about having Crohn's is that , well since I don't
like sports very much I sometimes get to skip P.E. and another thing is I
get to get out of class because I have to go to the bathroom.
I want to know how to get people like me with Crohn's Disease,
to talk to please help me! I'm 11 with brown
hair and blue eyes. I was just diagnosed with it. I need to talk to
someone. I think this great for me because I was just diagnosed with Crohn's. I like everything so far. Some of the food I tried already and it's good!
I am 17 years old and was just
diagnosed with Crohn's disease two weeks ago. I am taking 3200 milligrams
of Asacol a day and sometimes Bentyl to control cramping. Before diagnosis
I was in the hospital for 3 days and after an arsenal of tests and a
colonoscopy, my doctor concluded that I had CD. I know I am very fortunate
because before the scope of my colon they didn't know whether it was CD or
lymphoma (a type of cancer). This is all very new and kind of scary tome. I
used to be one of those people all my friends hated because I never got
sick; at least not until about a year ago when the pain in my stomach
started. Anyway, lately I've been having emotional highs and lows where the
oddest things will cause the tears to flow (I'm told that this is normal and
that this, too shall pass). I'm really glad I've found your page; it has
offered much appreciated good advice and support. Thanks
From: Beth
I have Crohn's for 6 years. Last year the doctor said to me that
I needed surgery. It changed my life. I started on macrobiotic's food and
changed my doctor. Now I feel better. I take Budesonide, called
Entocord and Sulfasalazina, called Azulfim. I don't eat fast food,
chocolate (sometimes I do eat it), Cokes, etc. I eat more grain, vegetable and,
the main important thing, I chew many times (about 80 times or more) the food I
eat.
I am a person, who has never had a teenage.
My Crohn's struck when I was 12, and in all probability just entering
adolescence, due to my excellent health, size, appetite etc. I was quite
large for my age at the time.
I am now 24, and I still look like a 12 year old, I am 5ft4 (nearly!),
weigh 72 lbs., and now have rheumatoid arthritis, probably caused by the
fact that I had several accidents at the age of 20, when it was unknown
that I had severe Vitamin D deficiency. I also have osteomalacia as well,
and require vitamin D and B12 injections. I take azathioprine and Pentasa
for the Crohn's and loperamide and codeine phosphate for my diarrhea. I have had several operations, removing gut, perianal abcesses etc and now
have had to have a Seton stitch to prevent my two abscess sites healing
over, and then bursting again. I don't believe that anyone understands how I feel, even those with Crohn's
disease, for the very reason that most people may have delayed adolescence,
up to 20 is the norm. But at 24, and still not grown, is very rare. I want to die, so if you know of any on-line
counseling please send me the
details.
I don't care about the Crohn's side, more about the arthritis (I am unable
to run and have severely limited upper body strength now), but more about the
fact that I can't cope with everyone judging me as a 'dumb' 13 year old. I am 24, and have a degree from Cambridge University, and am extremely
intelligent, so it is very hurtful for me to be spoken to like an idiot.
Also, I still have a very high pitched voice, so I am mistaken for a
female, 100% of the time over the phone, and 50% when I am talking to
someone. I want to kill anyone, who calls me Miss now. I don't why I'm telling you this, I'm at my wit's end I suppose.
I have been an outsider all my life. Even when I was younger, due to my
intelligence I didn't like anyone, because I thought they were all thick,
and beneath me. When I did go to a school with intelligent people, I got
Crohn's and again was ostracized by the fact that I was considerably
smaller than any of my Friends. I dreaded going every day, especially by
the sixth form. Of course, I was bullied frequently which didn't help, nor
the constant reassurance that the latest treatment from my Doctor's would
have me growing in no time. University was much like school, and again my size meant that I would
hardly go to the pub because I got fed up of embarrassing myself, by having
to prove my age. As well as the looks, that 'Are you sure you're meant to
be here?"
I'm 24 now, and have so far not found employment, I feel robbed of 12 years
of my life. I did once try a young persons IBD group, but again they were
about my age, but all had gone through adolescence and so again I did not
fit in. I was hoping I might find someone in a similar situation, but this is a
teen's page! Just shows how desperate I am, because I have yet to find
anyone in the whole world who knows what I am suffering.
Because of the Crohn's I do not get along with my family. The accused my
all the time of being anorexic when I couldn't eat food, and I know my
father sees disappointment every time he looks at me (all the males are
healthy 6-footers in my immediate family). I live by myself because family
life always revolved around the kitchen table, and food. All the major
fights, accusations, (like "it's all in the mind", "just eat it", they also
never believed that Crohn's gives people jaded tastes sometimes).
I have no support and am all alone.
I hope I have not depressed you too much!
I've been living with Crohn's for 20 years. I appreciate your efforts. As for
recipes, they recommend that you eat anything that agrees
with you. Love popcorn and peanuts myself, but they're not everyone's
style.
I am part of the original Pumpers group in Chicago - we are (mostly) all
on TPN. Some on HEN. Anyway we can help with your mission, let me know.
Go on to August 1997
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